The Mum Saga (mostly)

12 August, 2000

To friend.

Well, Austra and Ian have left and are having a wonderful time already in Paris. However, our life has just got more difficult, because mum has landed in hospital.

On the day that Austra and Ian were leaving (Monday 7th), mum was not feeling well, she complained of a pain in her stomach and was totally “out of it”. I had already been up to attend to her about 6 times during the night. The day before, she was fine and came with us (in her wheelchair) to a picnic on the island near the Zoo.

Anyway, I took the Harts to the airport at 4 p.m. and dropped them there and went back home to try to figure out how mum was. Dzid and I had supper and changed our minds 10 times about what to do about mum. Then, around 7.30 I finally decided that we had better do something, as she was never ill like that and out of it for so long. So, I called the ambulance. It arrived immediately and we were at the hospital by 8 p.m. Various tests later, she was diagnosed as probably having a gall stone blockage with infection, making her very sick. More tests to be done in the morning. We left after midnight, leaving mum behind.

Next day, after a brief visit, I left Dzid at the hospital to stay with mum the whole day. I visited at lunch and picked Dzid up at supper. And that has been the pattern since then. Dzid reads all day and talks to nurses and doctors to glean what information she can, tries to help and reassure mum, etc.

On Wednesday, they did a local anaesthetic operation to put a tube into mum’s gall bladder and attached a bag to drain it. They have decided not to try to operate to remove the stone and the bladder because they feel that it would be too risky, considering her age and heart condition. The option now is for mum to keep the draining system. Apparently it can stay in place for up to two years before it needs to be changed, if there are no other complications.

In the meantime, mum is still very weak and sometimes out of it, though the latter is now due mostly to medication, I think. She is to stay in hospital for up to a week yet. Then, home, and presumably will sleep on the main floor, where Dzid slept in the “library”, though I don’t yet know what the possibilities are for getting her bathed in that case. Or, maybe we will have to haul her upstairs and have her stay there. That would mean no walks outside. That seems the more restrictive of the two. So, all that has yet to be figured out.

So, all in all, we are into “the next phase” and it is not much fun for anyone. I am very glad that Dzid is here to spend time with mum in hospital, and to help us all and to be part of it, even if it is not fun.
So, that’s where we are now. No more hikes or other outings.

17 Aug. 2000

To friend.

First, yes, mum is still in hospital. With physio and such they are trying to get her strong enough so that one person can get her up and about, with the help of a walker and wheelchair. The home care people do not send two people to handle anyone, so it has to be managed by one person. It is going incredibly slowly. When I visit her, I take her outside in the wheelchair and I usually try to get her up and taking a few steps with me. Today, it went O.K. for a bit, but then her left leg gave way and she was collapsing onto the lawn, with me trying to hold her up and get her back to her wheelchair. A gentleman riding by on the bicycle path along the Glenmore reservoir/lake, that the hospital overlooks, saw our predicament and dashed over to help. Very nice of him, but it all is not very encouraging If she does not get strong enough in the next week or two, I think they expect her to go to a nursing home. All I know about them is that they pretty well all have long waiting lists and can take months from the time that you apply. And some are good and others are awful… And I guess the only way to find out is to go and visit them… etc. etc. She is supposed to come home for an overnight visit on the 25th, with social workers in tow to check out the house to see if any more equipment or installations are needed. The question of upstairs or downstairs, how to bathe etc still remains. And so it goes.

26 August, 2000

At our end, mum is still in hospital. Dzid spends all day every day there. She leaves for Sydney on Wednesday.

Mum’s initial operation for draining the gallbladder went well and mum was recovering really well. Then, on the 13th (it has always been a lucky number for mum, though not this time), the day after I wrote to you, three nursed were getting her up out of bed (there are not usually that many around, and that may have contributed to the problem) and in dragging her off did not notice that her draining bag was attached to the bed. The result was that the surgically inserted tube was wrenched out and ended up in a bloody mess on the floor. I think Dzid about died when she saw that. That was in the evening. Frantic calls to the doctor at home to inform her. She was not helpful. So, we were in a panic. Next morning, I guess she had had second thoughts and had checked and decided that the situation was drastic. Problem was that there was a chance that they would not be able to reinsert the tubes, etc., etc. In the meantime, bile is draining into wherever… Somehow, they managed to reinsert the tube, we have to believe correctly. Still, it was a huge setback, with more infection, weakness, drugs and just plain time to recover. An extra two weeks of lying on her back, too weak to do anything at all. Bed sores, raw bits on her body, disorientation, deterioration of all functions. On Friday 25th, she finally went into another section of the hospital where they try to rehabilitate the person with physiotherapy and such. It is now the weekend and, of course, there is no treatment available till Monday. And so it goes. Dzid has got her doing some strengthening exercises, so maybe it will all work out. She wants to come home, but until she is strong enough for one person to be able to handle her, she will have to stay there. And there is much more to tell, all about the general lack of attention (and I don’t mean that the daughters are complaining that the mother does not get enough care). The surgical ward doctors were ready to send her home. The geriatric care people took one look and said “Are they crazy? There is no way this person can go home!” etc.etc. I was relieved. They promised to get her to the stage where one person could handle her, since that is what we need when the Home Care ladies come to do their bit.

The geriatric care people talk well and have all the right intentions, but they also do not have much staff and their capabilities are severely limited. Dzid watched today at lunch (she is really not supposed to be there, but by pleading Australian-type long distances, some translation — people who have no other than their own language never think that their vocabulary might not be understood, e.g. “stool”! What an unlikely word! Or “I will give you a poke now”, where “poke” is supposed to mean a “needle”, and so on and so forth, I could make an endless list. Anyway, back to Dzid at lunch, where she was helping mum to eat, she watched as another patient who had a disabled hand was given a half banana, sliced in half but not peeled. He tried with his one good hand to peel the banana without success. He tossed it and it ended up on the floor, where it still was when Dzid showed me where the communal dining room was today (in preparation for her leaving soon).
So, things are progressing slowly, but painfully.

Dzid and I plan to have one more hike in the mountains on Tuesday, if possible. Since mum’s problem, all normal life, let alone more interesting life, has come to a halt. Dzid leaves on Wednesday. We hope that mum will be well enough taken care of by then for Dzid to leave for a day for the first time in about three weeks. My task is to choose a hike that is not likely to have a bear problem, and there have been some of those lately.

Sept 5, 2000

It was a long weekend, with Monday a holiday. So, of course, there was no physio for mum for three days. However, I fed her vitamins and took her outside in the wheelchair. We are now doing that every day and she likes it. I think the doctor cut back on the pills as we had discussed, and I think that that has helped. Mum does not complain of the cold and cramps the way she did before.
They say that a typical stay in that unit is 4 weeks. So, I guess there is time for her to get stronger, and I’m sure she will.

10 Oct, 2000

To friend.

Not much new to tell. Mum is still in hospital and they now think she should go into a nursing home. She, of course, does not want to go. I am not sure, but think that maybe she would be better cared for there, physically at least, than here. The stairs here are a problem. She came home for an overnight stay on September 25, and it wasn’t easy, even though I did not try to take her upstairs. All this is so bloody hard on both of us. And I don’t really know what to do. And it is hard for me around the house here. Everything about the place is geared toward helping her. And now it can’t help her. It tears me apart.

Mum turned 94 last Wednesday and I brought in a cake for her table to share. That was OK. But today, I learned that her table companion, who had become a really close buddy for her in hospital, has been discharged and taken to a seniors’ home. He was someone I had met some years ago when I ran the gallery. We gave him a retrospective show. He is a well-known painter and thought that he and mum were “one of a kind”. It is too bad. She will miss him terribly.

Fall here is progressing rapidly. Leaves are falling fast, even lots before they turn yellow. One always wonders if that means that there is awful weather coming soon. There is a sense of sadness and almost dread at the approach of winter, cold and dark. It is a feeling I could well do without right now.

Sorry about all the doom and gloom. But that’s how it is. I have to struggle quite hard not to get done in by it all. Since I can’t think of anything cheery, I’ll quit.

Oct 24, 2000

Last week I visited 11 nursing homes. Some are more lavish than others. They are mostly very similar to the set-up at the hospital. Similar rooms, beds, dining area, physio/exercise areas, tub rooms, etc. Some more private belongings in the rooms. And more social activities and outings, as well as visitors at any time, including for meals, etc. I have come up with a priority list. I now have to discuss it with the placement person at the hospital. I will try to set a meeting with her to have a better chance at getting more complete information than over the phone. It has all been quite hard.

Mum is doing fine. She is comfortable, is more or less her old self. Gets frustrated at getting into a mess at food time. That should hopefully improve at the nursing home, since they do generally have provisions for people to attend to those who need help with eating (a lot are in much worse shape than mum, including every version of dementia, though those are usually, though not always, segregated from the rest).

Some aide called Lorenzo. has been taking mum for a walk up and down the corridors most weekdays. I have not met him, but mum has latched on to him and he tells her that she is improving, etc. The other day, mum said that John Snow had slipped out of her mind of “important” people and had been replaced by Lorenzo., because he helps her. So, I guess that is survival mode in action.

Today, she had an ultrasound. I went to ask what that was about. Apparently the doctor wanted to check whether all was well with her draining apparatus, as the bile fluids had decreased somewhat. According to the book of notes the nurse checked, all was fine. And mum certainly does not have any pain or other discomfort.

We had not spoken of the nursing home move since the day it was explained to her. I had not had the courage to bring up the subject. Then, today, she asked how long it would go on “this way” (i.e. current situation). I gulped and said that until she was taken to the nursing home, and she added “when there is space available”, and I sighed with relief, because I was afraid that she had forgotten and I would have to go through it all again. I assured her that there she would have people who would not be changing all the time, who would know what she needed and that she would have more help with things like eating, etc. She was cheerful enough and I was weak with relief.

At home, I am eating my way through all the accumulated food in the house: The stuff in the freezer, most of it for mum’s lunches and to give variety to her meals, from chicken to sausages, to pork and minced meat, corn, cheeses and strawberries, buns and bread. The canned goods, including lots of fish (I have not yet tackled those). And the Asian stuff, much of it too strange or too hot for mum. I have not got very far with this project, but I have bought very little in the way of groceries in the last few weeks. Somewhere in the back of my head, in an almost unconscious place, is the notion that a lot of all that was accumulated in an effort to sustain, to keep life going, to ward off the end. Now, there is an element in the depleting of the stock of “you can’t keep it going for ever, things do end, there is no fortification mighty enough”.

Nov 5, 2000

To sister.

Calm after the storm. I’ve just come back from visiting mum this morning. We had a snow storm last night. Not that much snow, but lots of wind and cold. This morning it is still cold, but the sun came out and we managed some time outside — a walk along the paths, with me hanging on to one arm and her using the cane in the other. It is how X. has been walking her and she is doing quite well. We also sat in the sun for a bit (mum bundled in blankets, etc.) It was quite lovely. All this week I have been bringing her bits of a rye bread that I baked (part of my campaign to use up all the stored stuff). She, of course loves the bread. Also some pear slices to keep the system moving!

For about 10 days now her draining system has not been draining anything. They gave her a very thorough ultrasound, but could not tell enough from that as to what exactly is happening. They think that the stone may have shifted and that the fluids are draining normally. However, on Tuesday, she will be taken to the Foothills hospital (that is the one on the hill on the way out of town towards Banff) for further tests at 7 in the morning. They have asked that I meet her there. They will do tube the through the mouth and stomach version to see if in fact the draining is normal, in which case her draining tube will be removed. If there is still some blockage problem, they would reinsert her draining tube in a slightly different position. In the meantime, she is comfortable, gets on well with everyone, charms them all, and yesterday said that she had woken up feeling “good and happy”.

She is also booked for the cataract operation on November 20. She has to go in for more tests on Nov 17, and then also on Nov 21 the day after the operation. Then in 2 weeks and again in 8 weeks after. So, hopefully it will do some good. That would be fantastic — even to see a bit more to cope better with eating, etc., and maybe even enough to let her participate in the world a bit more.

Last weekend I had a terrible time. On Friday, when I got home, there was a message on my machine that mum was being offered a bed at the Scottish, the closest nursing home. They said I should make arrangements to visit the place at the weekend (I had seen it before, but they probably didn’t make the connection). So, I called. The administrators, of course, had gone home by then, but whoever answered the phone said they would call the manager at home and have her phone me. So, she did call. She explained that the bed was on the 3rd floor, which is the dementia section, that there were a couple of disruptive residents there who were going to be moved out… I asked how long that would take — probably a couple of weeks! I was devastated by it all. The 3rd floor was the floor she did not show me on my visit because I might find it “disturbing and depressing”! And now, mum was supposed to land there! And there was no-one I could talk to at the hospital, since it was Friday night + weekend.

So, I arranged to see the place on Saturday at 10 am. In my list of preferences, the Scottish was number 10 out of the 11 I had seen. It is the closest, but that’s about all. The 3rd floor is a locked floor. Half the dementia folk were still sitting around waiting in the dining area; it must have been a couple of hours since breakfast! I was truly depressed. I thought, yes, one is supposed to take the first available bed, but not without some consideration for emotional and mental well-being. If I was going to be depressed by the 3rd floor, then mum would be doubly so. And I guess they would not put her in a room shared by a man, so the “first” bed is not an absolute. They told me that mum could move in next day (Sunday) if she wanted to! I said no way — I would sort it all out on Monday morning with the hospital, doctor, home manager, transition people and whomever else.

It was a horrible, agonizing weekend. I guess Nelson mentioned it to Pat Colwell (she works at a store where Nelson goes to meet a friend for coffee on Saturday mornings). She called me and invited me to dinner. She also told me that when one of her sons was in a bad car accident, and ended up in a coma, the hospital wanted to put him in some soundproofed area where brain-surgery people were put. Pat objected and demanded a room with natural light and music, and eventually they got her what she wanted. And they later said that it had probably helped the recovery.

Anyway, on Monday morning, I called the transition person at the hospital to say I needed to see her. I went in and met with her and the social worker who had originally made the arrangements for mum to go into the nursing home system. I pled my case as eloquently as I could, saying that I did not think that this was an appropriate next step. I even said that she would certainly have preferred landing in a room with a man! — which cracked them up. I also said that there was still the question of the non-draining tube, and if it was to come out, I thought it should be done at the hospital, before sending her to a nursing home. They agreed. Well, they went off to make phone calls and to confer. They came back and said that they were in complete agreement with me that it was not suitable. Whew!! I think I danced out of there! Apparently, they do not make the actual choice of place. The info gets sent out to the various homes and the ones with beds make the offer directly to me.

So, all that is now on hold. What may happen, if all goes well, is that she gets transferred to the place of choice, without having to go to some interim one first. That would be a blessing. So, I am keeping my fingers crossed, and in the meantime, all is calm and well and familiar.

Nov 13, 2000

To sister.

Last Tuesday morning was the test day for mum. I got up at 5 am to be at the hospital by 6.30 — the Peter Lougheed Centre on the other side of town to the Rockyview. Mum arriving by hospital ambulance. I guess it was very early for her, probably nervous, no breakfast and flat on her back, strapped to the stretcher, bumping along in the back of the van. Anyway, she had felt ill on the way, had thrown up a bit and was really cross, when I got to her.

She calmed down and eventually the doctor showed up. Well, it turned out that it would not be just a test. They were going to do “the procedure”, which is to go in through her mouth with the tube, camera at the end, and then, if all was o.k., they would extract the stones. I gulped and said fine. He assured me that they would not proceed if there was any problem in sight. So, about and hour later, mum was back, and the doc was jubilant. The nurse had already said it had gone very well, but I assumed that was just diplomacy. However, the doc was really happy, and even said stuff like “we’re not trying to make ourselves out as heroes, but…” So, I guess it was more than bedside manner polish. They had removed a number of stones and lots of “debris” (by means of some sort of “balloon” deployed at the end of the tube that scoops it out). He told me that they had not touched her pancreas at all, and I knew from her doctor that a possible danger was that through rooting around in there, they could infect the pancreas and end up with “pancreatitis”, which given her age, etc., could be as dangerous as the initial gallbladder infection. I asked if he had removed the draining tube. He said “no”, that he would leave that for them to do at the Rockyview.

In the meantime, the nurse putting in the IV in her hand had just finished saying how large and easy to find her veins were, when, of course the vein collapsed, and the fluid came up in a huge purple bubble on the back of her hand. The nurse just about died, and nervously found another vein, further up her arm, put compresses on the hand, etc. Her hand is still totally black and blue, the way it was when you were there. But I don’t think there is any discomfort.

The same ambulance people came to take her back. They had to lie her on her side, so she would not choke if she threw up. She was on her left side and I said that she never sleeps on that side because of pressure on her heart. So, with much effort, we got her onto the stretcher and turned the other way. I beat them back to the Rockyview by quite a while. The paramedics explained that they had made an effort to go via smoother roads. The nurses were there to get her settled in her bed. There was a sort of feeling of homecoming of their charge that was nice. They seemed happy to see her back and to settle her in efficiently. She was groggy from the sedatives and went to sleep. I went to work. It was about 10.30 am.

The next day, she was back to more or less normal, though the sedatives had put a loop in her memory of it all. The draining tube is still in and now has the bag reattached. This weekend is Remembrance Day long weekend, so it will have to be tomorrow that I call her doctor to find out about the tube and when and how it comes out, etc. In the meantime, on Friday, she will go for further tests for her eye surgery. I guess I’ll be driving her there and back.

In the meantime, the nursing home transfer is on hold. I do not know for how long, or if I am to pay for these weeks at the hospital, as originally stated.

This past week we had snow that did not melt all week. It got to 20 below a couple of nights, mostly has been -10 in the day and -15 to -18 at night. The Glenmore reservoir has frozen over. I was a bit surprised at that. I assumed it was pretty deep and would take longer than that to freeze. It may not last, this is a bit colder than it is supposed to be and it may all melt still before it refreezes. At the weekend, these three days, I visit mum in the morning and afternoon. In the morning there has been nice warm sun, and we go and sit in it and breathe in the cool air, pick a small twig from the pine trees and sniff it.

Nelson persuaded me to buy a small CD player, one of those flat roundish ones, with earphones. I also went and found some second-hand CDs of Chopin, etc. The last two days, I have left mum with music playing (usually about an hour or so before a meal, so that the nurses can put it away when they come to take her to the dining room). So far, so good. She said she liked it.

Anyway, do not worry. Everything is progressing quite well. It is all a compromise, as our art auctioneer acquaintance pointed out. His mother has been in a nursing home for some time. He also had Home Care before that. He says it is the most difficult and stressful thing one ever does. (He told Nelson that. He asks me how I am doing with an eagle eye to see if my answer is in the “ok” zone.) He has helped with specific info on how the waiting lists work for the homes, etc., and would answer any question I had on any of it. I also met a woman in one of the centres who was there visiting her mother. It was on one of my tours of the nursing homes. She said that it is never what you think it should be, it is always a compromise. But, if you are always there, they know you are there and the care will be a little better, a little better than for those who do not have family watchdogs.

So, enough for now. Hope your Blake dreams come true. You mention other normal, odd dreams. Every so often, I have heavy, complex, detailed dreams. Like last night. There was a full moon, that may have been part of the cause. I was on a complex journey, trying to find a way out of a labyrinthine situation, with a three-or-so year-old child on my back, quite heavy and cumbersome. Could not run when I had to. A previous dream spelled it out, as I carried mum in my arms, the way one carries a child, but she was herself, but in a 4-year old size. I wondered if people would find it odd that this child was so old.

Nov 24, 2000

To sister.

Yes, mum had the tube taken out. It happened with no fanfare. I do not know who did it , but her doctor confirmed it when I asked, having discovered it. She said that her dressing would be changed only as needed. I did not check today whether it was still there, but I will.

In the meantime, on Friday, we went to the Gimbel Eye Centre for tests. Some went OK, others were hard and the gal who was to do them had to call in others to help her — in fact to try a different method. I think they were measuring her eyeball (presumably for all the distances and sizes that are involved in figuring out a new lens, which is what the surgery is about.) Mum could not get her chin on the support and her forehead against the strap, as in usual eye exams. So, I had to keep pushing her head in place, which she probably was resisting, and certainly was vocal about saying to stop… It made the nurse-gal very nervous to the point where she quit and asked someone else to take over. It had happened before, with the doctor, on the first visit. They had a hard time getting a good reading. I guess mum does not feel all her bits, and so it is very hard to control them. Then, and more recently, I have got into a total sweat trying to make it all happen. Everything from transferring her from wheelchair to eyedoc-chair, most of which do not adjust to her small size, so that she is supposed to lean forward and place her chin… etc. None of which she can feel any more… all done with the hearing problem, etc.

Still, as we sat in the waiting room on one of these visits, I overheard people in the next set of seats talking about how Dr. Gimbel was the pioneer and still considered the expert in all this, with people coming from all over to study with him, etc. And he is the one who did the surgery. And mum came out of it saying that she “loved the doctor”. As an aside, there was a piece of paper in the package that asked if one wanted the doctor to say a prayer for the patient before the surgery. I decided to cover all bases and signed for it. When I handed over the envelope with that and umpteen other forms to the nurses, they threw out the envelope with the small prayer-request card still in it. I said: “But, but” … and they retrieved it and said something about that that meant that “he would say it aloud” — fine with me, I thought. Later, I heard someone in the waiting room who had just been “done” comment with appreciation that the doctor had “said a prayer for him”.

Then, on Monday (the above was on Friday), it was in for he operation. It all took about 3 hours, though the operation itself took about 20 minutes. In all that floor, from the receptionist’s desk to the nurses desk in the middle of the waiting room to “wherever one looked” (not quite, but that is what it felt like — in other places those spots might be taken up with bouquets of flowers…) there was a small black and white screen showing an eye operation in progress. I had to work hard at avoiding looking at them, since it was early enough in the morning, and involved mum, etc. I could have thrown up very easily. As far as I could tell, the images were of the actual patients. Someone in the waiting room asked if the nurse could tell whose eye it was on the screen, she said no. However, when mum’s turn came, I buried my head in a magazine and then kept looking up at the screen to see, in small spurts. Nothing showed up at all. Then, I got anxious. I thought: She has dropped dead; there is some other problem; there is some disaster; etc., etc. All this in furtive glances, getting a little more frantic as they went.
Then, they wheeled her out and assured me that “she had done very well’.

They hooked her up to a blood pressure monitoring machine. At first it was high, then, by the time I chatted with her, it dropped suddenly to OK levels, much faster than other people’s (I interpret that in retrospect, having seen them sit there for quite a while with the gadgets attached).

So, back to the hospital, with instructions for eye drops every half hour. And bless their hearts, (and I suspect it was Laura who mapped it out on a paper towel and the nurses ticked off the half-hours) they did it — and that is quite the assignment (and apart from anti-biotic drops 4 times a day).
The following day, back to the Eye Centre for more checks to see if it was OK. They thought it was.

Somewhere in there, mum said that she was now “back home” as we arrived back at the hospital. It just about did me in. And yet, the nurses do treat her as one of their own. There was and evening where some outside volunteers brought in dogs and cats (“pets”) for everyone to relate to. I happened to arrive at the right time and persuaded mum to stay in the dining area for it. I overheard one of the nurses explain that this lady could not see or hear, but that her progress had been wonderful and that she was very special and that her smile was something else, etc. etc. And the nurse said they would miss her, and I said they could have her. And that is not possible. And there was a message on my phone that she was now again on the waiting list for a nursing home.

And so it goes. I guess we are lucky in getting the eye surgery done while she is still at at the hospital. a few days before it, she had apparently had a fever. Before her fever, she had had a couple of days of diarrhea, mostly, I think because there had been IV before. They had put her on IV with some sort of anti bionics. I don’t know what that was about. Next time I talk to her doc I will find out. But at least, they monitor her quite closely all the time. Some of it if negotiable.

So, to better things. It has taken a couple of days to figure out that perhaps her eyesight may improve. At first she did not see it at all, and then, had trouble because she still gets some 8 or more drops of stuff in her eyes every day. However, she said yesterday that the “white fog” seemed to be gone, and that makes sense, if the cataracts are the white cloudiness. And tonight, we were outside for a bit, went for a short walk, and she maneuvered her stick around the pedals of her wheelchair, by sight. Before, she could not even see the wheelchair. She is not very aware of the changes herself, but is open to the explanations. I suggested for tonight, to try to go to supper without her dark glasses, in the hope that she might see some of the food or at least the plates… We will see, but I do have some hope. Nothing will change the macular degeneration (that leaves her with peripheral vision only), but there is some hope that the rest, in one eye, night be a bit better. The cloudy lens has been replaced with the clear one. For what it is worth. And I have great hopes, as she gets used to it.

There was a message on my machine yesterday that she was now again on the waiting list for a nursing home. So, we are out of safe harbour time once again.

Nov 26, 2000

To friend.

Thanks for your letters. No, I have not been to New Zealand (Dzid has). You say you will have to think about care for your mum and aunt. All I can give as advice is that anything you can see as a future need, do it now. Almost everything for my mum came very nearly too late. Dzid and I had talked about checking out nursing homes a few years ago, then, never did anything about it. But we should have. The trouble is that it is not something pleasant to contemplate, so you avoid it. And you never know till too late the questions to ask. No eye doctor ever suggested that a cataract surgery would benefit mum until now. It makes me cross and fills me with regret. Perhaps she could have seen her music a bit longer and learned some of the pieces by heart. etc. etc. The ingenious book support gadget that Nelson invented was used a couple of times only because her eyesight deteriorated suddenly. Even the wheelchair should have been acquired at least a year earlier, while she was a little stronger and when we could have used it for outings that we avoided because it was too hard. Mind you, it would have been a lot harder to persuade her to use it without your help! And then, when the chair was finally ordered, a mix-up meant that it was in fact not ordered. Another wait of a couple of months, and time and strength run out quite fast. So, anything you can think of, do it now.

November 29, 2000

Dream last night:

A part of a house, with people, etc. Mum there, wanting to go to another part — perhaps a part that was her room. She was independently mobile, but that was precarious, so had to keep an eye on it. She went off. To get where she was going, she had to go outside and then enter the other space. We stayed. Not sure who WE were. Can’t remember what we were doing. Seemed social. Then, suddenly realized that it had been a long time since mum had gone.

Set off in a bit of a panic to check. Went outside and into the other space. It was a room with a number of armchairs (with wooden arms, darkish upholstery, some red some blue, sort of 50s style, and a dark burgundy carpet) and possibly a table or bed. Mum was not there, the place was empty. Retraced steps and spotted her in a narrow triangular-shaped thing (like the protective corners one adds to pictures, etc., for shipping) made of grey weathered board and barbed wire, with straw for a mattress.

It consisted of two triangular sides, weathered boards about a few feet up from the base, then about three strands of barbed wire to finish the triangle. Between these two triangular sides, was the base and the back of the right-angle, made of the same boards. The floor of this open-ended thing was covered with straw, straw that was a bit like dry grass.

She was lying there, completely naked, flat on her back, rigid, with her head in the closed corner, her feet at the open end. Her body was like that of a young girl, but very skinny and white (a little Auschwitzian) — skinny arms at the sides, skinny legs, a little apart, but only enough to square the body shape, small breasts, blond short hair, a boyish thin face and grey-blue eyes. Her eyes were open, but seemed unseeing, body also very stiff and marble-like. It was cold and raining, and I was conscious of the rain falling into her open eyes and alarmed at that.

I was horrified, she must have been there for ages, I thought, maybe she was dead, why was she there, why had she not gone to the room, etc. etc. I saw a bit of movement in her eyes and realized that she was alive. I picked her up. She was the size of about a three-year-old, i.e. about the maximum I could carry in relation to my own body. The front of her body, all stiff, was against mine and it felt cold, her back felt a little warmer. I was hugging her hard to my body, full length, to try to warm her up with my own body heat and bring her back to life. She did revive.

Then, I was holding her so that she was sitting sideways in my arms, with her legs draped over one of my arms. When asked, she confirmed that she needed to go to the toilet. By then, I think that Nelson was there too, and we wondered why on earth she had ended up where she had. It seemed that she had made some sort of specific decision to lie down in that triangular wedge. We were hurrying to get her to a toilet, so that she would not pee all over me. Then we were alone again. We went into a kind of public toilet place. There were a number of toilets, some looked like bidets. None were working. I was looking for ones that had arm-rests to support her — she could not have sat on one without the support. Every time I came to one that had the support, it was inadequate, the toilet part was as long as a bathtub and was full of debris and not working.

Sometime there, I woke up. The dream was so real that every time I tried to close my eyes and get to sleep, it would come back and either try to continue or stay very vivid and scary for me. I had to get up, go downstairs, concentrate on other stuff before being able to go back to bed and blot it out and get back to sleep. It is still utterly vivid in its basic imagery, though not in the details of how one thing led to another.

November 30, 2000

To sister.

Today I got a call from another nursing home that has a bed for mum. I am going to see them first thing in the morning. The place is one I have visited and is quite good, though a bit far to drive, especially in the winter (yes we have had some snow in the last few days, though it may yet disappear before more comes later). However, if there is no special problem with the bed offered, I will have to accept. That means that they could move her as soon as tomorrow, but I will ask that it be Saturday on the grounds that I work and it would be too much to do it on Friday.

So, I have felt utterly sick at the thought, because of the X. attachment. Perhaps you could phone her tomorrow and try to chat with her to help her get over it.

Went to see her tonight. Decided that I had better tell her, so that at least she can say her goodbyes and thankyous or whatever. If I had left it till tomorrow, X. would be gone, since the physios are not there at the weekend. Mum was very upset and angry and sad, etc. She asked if she would have access to the exercise room (for obvious reasons). I said that there would be an exercise room there, but that she would not be coming to this one. It is all just about inhuman. She then said she would like to still come and spend time at home, not just visit but stay. I had to say that that was not possible, that she needed more care than we could provide. She asked if we could pay the nursing home fee equivalent and add some and have someone else help at home. I said that it would not work because of the stairs, the bathroom upstairs, that she would never be able to come down, or go out, and that it would be too dangerous in case of fire etc. Then, she said, “so I will never again live with you”. AAAAAAARGH! It is all so hard. Do call her if you can.

When I left, the nurse came in to take mum for a bath. At first she did her sarcastic sneer, “I am supposed to go and have a bath!” loud and nasty. I explained to the nurse that she was upset because she has found out that she is to be moved to a nursing home in a day or so. The nurse became quite solicitous and gentle. And mum calmed down a bit and I left them to it. Thank God it is bath night tonight. It at least fills some time for her. Though I suspect she may have a hard night anyway.

Dec 2, 2000

To sister.

The deed is done. Mum is at the M. Care Centre.
But to back up a little.
Yesterday (Friday) I got up early to go and see the Centre one more time, and to see her room in particular. The place was # 5 on my list of 11 that I had visited, and was one that seemed O.K. and had a good reputation according to a friend and her friend that I ran into as I was leaving it the first time (the friend lives nearby).

Before setting out, as I was having breakfast it suddenly dawned on me why mum had asked if her “green dress” was there. She had once asked for it before, early in her stay at the hospital, and in retrospect, it must have been at the John Snow time. Of course, her dress was not there. And I dismissed it from my mind, until breakfast when I understood that she wanted to look good. It’s not that I’m dumb, it just takes me a bit longer! At the first earlier request, it would have been too hard to deal with (with her tubes and all). Now, it was not. And, since I had got up early, I realized that, if I hurried, I could maybe time it just right to dash in and put on her dress for her before her breakfast time. So, I dashed in to the hospital, got there at 8.30 and she was already in the dining room. However, the young nurse spotted me and asked “What are you doing here at this time of day!?” I told her that this was probably mum’s last day there and that she wanted to look good and wanted to say her good-byes and thank-yous and that we would only be a couple of minutes. She said “No problem” and later said that she would let everyone else know. So, I raced mum back to her room and put on her dress and the red poncho. Cindy came in and told her that she looked great and took her back for breakfast. I dashed away to a check the nursing home at 8.45 (it is only about a couple of blocks from the hospital) and then dashed on to a meeting with our accountant at 9.15. Made it.

In the evening, when I visited mum, she was in good spirits, had had a good day in her dress, feeling more “civilized”, I guess. I did assure her that she looked good in her pants and jackets, etc. Anyway, her mellow mood soothed my frazzled mind.

In the meantime, I had persuaded all that the transfer to the nursing home should be on Saturday (to give her time to say her farewells), and, after a bit of hesitation, decided that the hospital should take her there and not me — to make it an “official, necessary next step”, instead of me depositing her at a place she would rather not be. I told her I would meet her there when she arrived, transfer all her clothes, etc. She made some comment about “well looked after” (in English, and not directed at me in particular, more at the whole system). She also said that, for the first time she felt a lot healthier that day.
And much thanks to you for calling her. I am sure that that made a huge difference. I went home somewhat relieved and did not have any disturbing dreams about her.

This morning, got up relatively early to get to the M. at 9.00 to hang up her clothes, etc.
She arrived about 9.30, in the hospital ambulance, was happy enough and happy to see me. The basic interview with the nurse. Then, we went outside for a bit and in a while I left, leaving her with a string within reach to call for assistance. Her room is a lot smaller than the one at the hospital. Her roommate is a charming little lady with a charming smile and a wish to “do the right thing”, but who forgets most things very fast and looks confused at all that is happening there. Still, at other moments, she is perfectly rational and present. She pokes around in mum’s cabinet and looks puzzled at the hair brush she does not recognize. Then, later in the day, asks me which is her cupboard, the Right or the Left, because she wants to “do it right”. I tell her and point it all out. She is grateful and flashes her winning smile. Maybe she will remember, maybe not. I suspect not. She is German. At one point this evening, she told me that she had lost a small gold ball, a “Kugel” she said, and proceeded to describe it in German. Since I could understand what she said, I could continue the conversation without a break. In the morning, when mum arrived, this lady’s niece (her only relative) was there. Also a charming woman. She said, in passing, that it had been somehow especially traumatic and frightening for her when her aunt came to the M., but she said that it was a very good place and that the care was very good. That cheered me up a little.

On the same German theme, this afternoon, there was another little old lady parked outside mum’s door in a wheelchair. (At this place, everyone seems extraordinarily mobile. Some of it seems chaotic, but all the staff are cheerful and all the residents seem somehow active and all over the place. I take it as a good sign.) Anyway, this lady was sitting there proclaiming loud and long and non-ending (mum and I went outside, sat, walked, took vitamins, ate bits of home-baked bread and returned), and she was still at it when we returned, a long, somewhat ranting tale of disaster, I think war disaster, all in German. I did not have time today to listen to it to decipher it. I think the two German ladies are coincidence, but it all adds to the mostly surreal quality of all this. It is a bit like the 19th century or earlier versions of insane asylums, a bit like strange dream sequences, a bit Kafkaesque. And one has to hang onto one’s own sanity and determination to make sure it makes sense in the end. I have made a list of stuff to question and arrange. I also have to provide some sort of dresser-type furniture of a limited size. There is very little room to maneuver at all. I turned the bed around the other way, so that mum could get in from her usual side. I bought a down coverlet that we will try tomorrow, though the room and the whole place are much warmer than the hospital.

The unit she is in is classed as extra care. This means, according to them, that there are extra staff available. It also means that she goes on the second sitting at meals. The first are the more able, who get it over and done with fairly quickly. Her mealtimes are 9, 1 and 6. This evening, I asked her how lunch was, whether anyone had helped her, had cut up her food. She said yes, that they cut it up and then said “viņi man bāza mute” (they were shoving it into my mouth). AAAAARGH. On one level it is OK. On another, maybe not. Maybe that kind of fine-tuning is not possible. She used to feel humiliated when she knew she was getting into a total mess with food before. Now, this is the possible next step. Help that assumes you are helpless, and so becomes painful. There is so much to sort out. Much for her to fight. Much for me to monitor.

This afternoon, when I went back to visit her at about 4 o’clock, she was sitting in her wheelchair, guess she had been there all afternoon (?) and had the most miserable look on her face. So, there is much ahead, much fine-tuning of requirements and maybe not all of them can be met, since, as they told me at the hospital, the nursing homes do not have the same level of staffing, etc.

I did buy a huge tin of Danish cookies and a card with a very suitable message and delivered it to the hospital today. They were surprised to see me walk in and asked how mum was doing…I said that she was not having any fun yet, but maybe in the future….

By the way, L. asked about you a few days ago (she was the officious one, but in the end I liked her, mum liked her and she was efficient and even caring as well as officious!), also, someone called Y., a small middle-aged nurse (she had been on leave for a while), small round head, short hair, glasses, I think. She especially wanted to be remembered to you.

So, have to quit. Mum’s nurse’s name is L. (she seems nice, but, as you know, it takes a while for all the information to filter through to all the other workers). Her unit is called B. and her room is 76. I suspect that the room number is enough. The phone number is ****. Her room is quite close to the front desk/nurses’ station.

There is a subtle difference when this move is finally made. In the hospital, it was always based on a medical “problem” that was being looked after in whatever way. Now, there is no medical problem. This is it. The last corral. I do not think it is lost on anyone. Still, looking around at that place, there are lots of guys, mostly residents, but some employees. Have even seen, what could be couples, but what might be more likely “friends” sitting close in in the common room. Tough bloody shit1

Tomorrow, I will visit twice. And the rest of the time, I have to rework part of our famous business plan! Yuk! I hope that the two weeks we have scheduled for time off from work at Xmas will actually happen. I need it, rather desperately!)

December 12, 2000

To sister.

Not much time, but a note to tell you that all is as well as can be expected, I suppose.
We have deep-freeze weather since the weekend, with highs close to -20 and lows close to -30. And some snow and icy roads. That makes it all a bit harder. Yesterday, could not go outside with mum, even for a little bit. Too cold. Today, at some -18, it felt positively balmy and we did go out for a bit and walked for a little bit and mum said it was good.

On the Sunday after mum went in, Nelson and I took over mum’s white chest of drawers (the one beside her bed). And Nelson brought her a bunch of flowers. So, she was happy about that, and she recognized her cupboard, which surprised me a little. Yesterday, I hung two of your bigger pictures on the walls (one of the double heads with big eyes, and one of the two gals in water that was over the piano). Mum can’t really see them, but she knows they are there, and I thought they might be good for the nurses. I threw a small left-over Christ picture (left over from the previous occupant, I guess) into the garbage and put your nudes in its place.

Last Friday, took mum for her eye check. There is some very slight improvement. And that is all that can be expected, since she has macular degeneration in the centre of the eye. So, some peripheral improvement. Another check to go to in a month.

In between, she has been very unhappy, because all is new and strange, the nurses are all very “cheery dearie” and do not take a lot of time to listen to any individual little old lady. Lots of the latter are quite out of it, so, I don’t know if they think mum is too or not. She tends to be slow to reply and not very aggressive or loud in her requests. And so she gets passed over in their hurry. I do what I can when I can, but most of it will have to wait for a time when I meet with them in one of their “family” meetings. Have not yet had a chance to find out when and how that happens. Next week, we are off work from the 20th to January 2nd. So, I will have some time to set meetings, etc.

All this is just like starting the whole process all over again, only worse. And mum is more aware of most of it, and it must be depressing for her. Her roommate seems to be very nice, and likes mum, and mum says she has helped her a lot (probably in getting requests heard, etc.). She is mobile with a walker, and a little without. Her memory is going a little, but not a lot. Mum asked if she could sit with her in the dining room. I relayed the request to the folk at the desk. They said they would see what they could do. That was yesterday. Today, she was still in her usual other place. The other lady is a bit chatty. I hope that that does not eventually get on mum’s nerves.

Yesterday, mum said she hates the place. Today, she was in a better mood. She had asked me to write to X., and I bought a Thank You card and wrote a note from mum to thank him for his kindness and to tell him where she was. So, now she waits for an answer. Today, she said she wanted to go and visit him some time. I did my best to discourage her, saying that he is there only in work hours, and that in any case, what he did was because of his job and not for some romance. I don’t know if mum caught it all, but she got the general idea, and in any case, probably knows that anyway….

On Saturday evening, I got a call from the nurse at about 7 pm. Mum had been found fallen on the floor in her room, but was ok. I drove in and discovered that she had been trying to get into her bed from her wheelchair. The bed is high, and even if it were not, there is no way she could do it. Made her promise to never try that again. She agreed and was a bit subdued. Blue lump on her head, but otherwise ok.

Then, yesterday, I arrived just as one of the aides was bringing her back from supper. She parked her in the hallway, telling her she could not go into her room. I went up and said, but of course, she is going into her room. The aide explained that it was too dangerous to let her go in because of her fall. I assured her that I had talked to mum and she had agreed not to try anything again. The aide clearly did not believe me. So, now we have another kink in the system that makes it less pleasant for mum. Maybe with more discussion with them all and time it will sort itself out. It makes me sick, almost literally. In fact, I have not managed to shake a cold I had two and a half months ago. Will have to go to the doc on Friday. Hope it is nothing more drastic. And a stomach acid reflux problem did not get cured by the medication that was supposed to do it. So, have to check that too. Could be ulcers or worse or not. I can’t wait for some time off soon. It has all been too much.

Dec 24, 2000

To friend.

Tomorrow, I pick up mum and bring her home for lunch and dinner. That may or may not be fun. It will be her first trip home since the nursing home admittance. It is all very hard.
In the meantime, I have between now and New Year free, so, I will write soon. I also have a list of “to-do’s” that is a mile long. Clearly it will not all happen in the next week. Still, I can hope and dream.

Jan 7, 2001

I brought mum home before lunch on Xmas Eve and she stayed till dinner. Nelson came for dinner and all was fine, until it was time to take her back around 9, and she wanted to stay the night. But I had signed her out only till the evening, and although I could have phoned them, it would have been too hard to cope at my end. So, over her protests, I did get her bundled up and we headed for the car. Then, she could not manage to walk properly after she got down the stairs outside. I had to sit her down in the snow and dash back in to get Nelson to help hold her up. And so we went back to the M. It was no fun at all. Next day I went to see her and she seemed to have gotten over it. On New year’s Day, I took her home for lunch and a nap and then back to the M. for dinner. That time it worked fine. She was in a pleasant mood and made no protests and it was OK.

The two weeks I had at home just disappeared. The weather was not too bad, so the drives to see mum were OK. Sometimes it is really cold at that time and I usually don’t stir from the house at all. I had a “to do” list as long as my arm and managed only about half of it. I did not manage to write letters, as I had planned. And now, the next thing I have to do is to add another clause to the Power of Attorney that Biruta’s son has so that they can lease some of the Kikuri land to someone who wants to farm it. So, lawyers, and translations, and mum to lawyers for signatures, and sending the stuff to Ottawa to the Latvian Embassy for ratification, etc., etc., etc. I hate to even think about it, but I can’t leave it too long, because they should have the paper before the spring farming season starts.

Jan 15, 2001

To sister.

The unthinkable has happened. Mum fell at the nursing home and broke her hip. I am just back from the hospital (12.15 am). She is in unit 81 room 2, at the Rockyview. The direct phone number to the nurses’ station in that unit is 403-541-3581.

I had taken mum out for a McDonald’s lunch and put her to bed at the nursing home for her nap afterwards at about 1.30. Then, this evening I went to Nelson’s for dinner and came home just after 9. There was a message on my machine that mum had had “a tumble” around 3.30, which must have been when they were getting her up from her nap. A nurse or aide was with her at the time. And I think they said that after 7 they had had her transferred to the hospital, as she was complaining of pain and her leg was swollen. I dashed off and she was still in emergency, but had had her X-rays. I stayed till they found her a bed and installed her. I don’t know exactly what the break is like. I did ask a nurse what the next step is and she said that they would probably try to pin it, i.e. surgery for sure. That brings up all the old concerns re anaesthetic, etc.

Today, was the 13th. And the day that the tube got wrenched out was also the 13th. Mum used to think that 13 was a lucky number for her. I guess that has changed.

So, she is now on demerol and I hope that she will sleep well. The nurses who attended to her arrival all seemed really nice and careful and perceptive. I hope tomorrow’s lot will be the same. I sat till she dozed off.
So, the going gets tougher — endlessly.

Jan 18, 2001

To sister.

They shipped mum back to the nursing home today. They sure don’t waste any time.
I came in to see her in the hospital in the morning and the nurse said they were planning to send her back to the M. in the next couple of days. I pulled a face (and in this unit they were very aware) and she asked if I did not think that was a good idea. I said, how could I in light of what had happened there, and that I had about no confidence in the M. at all.

Anyway, the messages came later (I happened to be out): one from the hospital that they were shipping her back today, probably at 1.30. The other from the M. I talked to the woman there, who had been told by the hospital that I was nervous about mum going back there. She said they would hire more staff to give her 24 hour individual care from today until at least Monday.

When I got to the M. at 1.30 (the woman was supposed to call me as soon as she knew the time of arrival or as soon as mum arrived, of course she did not) mum was already there and had been fed some lunch. There were aides popping in and out all the time. I guess they are a little nervous too. I left without talking to any administrators. Just could not stomach it. This evening, one of the guys, who is not a “cheery deary type”, had fed her and was washing her down (in bed). He said he was stunned when he heard what had happened and told me he would be looking after her for the next 8 hours, i.e. the night. She seemed comfortable enough.

The following are my notes last night (17.1.01):

“Yesterday, they said mum had had some morphine in the night.
In the afternoon/evening, she was given 2 units (I think they are like one of those IV bags — at least there was one of those hanging up, dripping blood into her via a machine and the same sort of vein entry as a regular IV). When I came at 5.30, she was cold. I fed her a bit. The nurse (a new one and less giving than the others I had met) said that the cold was probably from the blood which goes in colder than body temperature. Mum felt warmer after I fed her.

Today — morning and evening — she talked nonsense. I presume it was the drugs. She was very chatty. In the morning she said that she had “walked here” — the nurse thought she said she had “worked here” and thought that was not likely, but asked if she had ever worked in a hospital — I told her that in fact she had, in Australia… Anyway, mum thought she had walked there and was not sure how to proceed. The latter is a recurring theme: “What do I have to do next?” or “What is going to happen now?”

Tonight, she had not eaten much. I thought she had eaten nothing and went to get someone to turn her so that she could sit up… Anyway, she seemed quite relaxed and happy. She talked on about us having bought all these houses (I assume she meant our house, the nursing home, the hospital, etc.) and wondered how we could afford to spend all this money staying so long at a hotel (the current hospital).

Then, she said she had decided to “go with the flow” (Kā nu iznāks, tā būs labi) with whatever happens next. I thought that was a brilliant decision and an amazing insight and much comfort for her.”

So, that was last night. This morning she was cross and cranky and frustrated at not being able to eat properly. That, I guess is a good thing. But good for what?
At the M., she said something about “back to the same old stuff”.

So, tomorrow, I will try to find the strength to overcome the nausea at the idea (I am so angry that even tonight, I avoided the nurse at the front desk) and face the M. folk and figure out what they should do to make sure she is fine. Tomorrow is Friday and it is my afternoon off. At least let’s hope it works out that way. It doesn’t always.

Anyway, mum is probably as ok as can be expected. I think that the M. is going to try hard to compensate. So, don’t worry. I doubt that you will be able to talk to her for a while. She is in bed most of the time. At the hospital they had her in a chair (but not a wheelchair) for meals — mostly because it is good for her to “get up”. At the M., when I asked if she had been “up”, he said “no”, but that they would “assess her tomorrow”. In any case, if she is in bed, they cannot make any sudden moves to get her to a phone, and there may be only a few times a day when she will be in her wheelchair.

Jan 21, 2001

To sister.

I met with the Head of Nursing at the M. and had a longish discussion with her. She told me that they had hired extra staff to give mum 24 hour care until Monday, that is tomorrow. I guess they have not had someone out of that kind of surgery just 4 days later. They had already brought in an orthopedist to give the staff a training session on how to move her from bed to chair, etc. The fall happened because there was a single person getting her out of bed, instead of two. They have “disciplined” that staff member. I repeated all the stuff about no balance and left side weakness, and vision and hearing and on and on. I said that I knew all that had already been said and written into the book. However, they had to make sure that staff read and understood it. I suggested a “white board” for the wall with relevant and changing info on it. They are putting up instructions now. We’ll see about later. I said I would buy a board like that, if it would help. I also said that the “cheery dearie” stuff was not good enough, that they had to LISTEN, and I gave her some examples that I had seen. She did recognize the validity, etc. And I said I knew they had a lot of people to care for and that some requests made no sense, etc. etc. Also told her that mum was a world-renowned writer and a pianist, etc. etc. That did get her attention. (Nelson suggested I say all that kind of stuff. I can’t lay it on as thick as he can, but, I guess, even a little helps.) However, she is also a diplomat, so who knows what will filter through, though she did say that they should call a staff meeting about mum’s care with me there, sometime soon. There is a general team/family meeting set for February 7, but there may be a separate “special needs of the moment” one before that.

Yesterday, mum had a temperature in the afternoon, but today, that seems to be gone. When I saw her at lunch, she was in a different wheelchair, one that could raise her legs up, waiting in the corridor to be taken in to the lunchroom. An aide WAS with her. They have kept watch over her at night and turned and adjusted her every few hours, as needed. She says that she slept ok.
As for the toilet, at the hospital, they sat her on one of those commode frames on wheels that can fit over a toilet. I assume they are doing the same here.

I checked on mum again before supper tonight. She was back in bed and comfortable. She has been told that she is strong and she herself believes it. So, maybe it is a matter of time and vigilance. Though, whether she will ever walk again, is in question. And that changes all that we have been doing (me taking her for walks, however short, every day). And therefore, consequences for her constitution, and so on and so forth. This cannot but increase the waning.

Jan 31, 2001

To sister.

Don’t panic too much about the drugs for mum. I had a long conversation with her yesterday. She is OK. The drugs are a nuisance, but they are no different than at the hospital, and they will pass. The problem is that she is on antibiotics at the moment. She has a urinary tract infection — “something that happens”, according to them, when you have had a catheter, as she did when she was in hospital for the surgery. So, we wait. I had already mentioned that she was “out of it” because of the antibiotics, and yesterday the attendant said they had changed the version of antibiotics to make it easier.

I also spoke with the head of nursing this morning about not over drugging, etc. The pain killer is Tylenol and she felt that the effects were not likely to be from that and more likely to be from the antibiotic. And her reaction is totally consistent with any time she was on antibiotics in the hospital. So, we agreed that the less drugs the better. With the proviso that they should ask her where it hurts when it hurts. They have been using a lifting frame where she is lifted by her upper arms. She hates it because it really hurts. I told the head woman today that her arms and upper body just are not strong enough to take her weight and that if they had to use this contraption that someone should support her weight. So, tonight, there were new instructions on the list on the wall, in red, that they should use some other contraption that would give her more upper body support.

It is a constant battle. But she is strong. They all are a little amazed. And she herself believes that she is strong. She will definitely get through this. About a week ago she remarked that she was quite delighted that she had discovered that she could live like this too, without going for walks or moving much at all, and reaffirmed that she wanted to live more and more, despite everything.

Today, I had very little time with her as she was due to be taken for dinner in the dining room. I could have gone along, but it is not really useful. But, she said that she had had a good day, and she said that X. had visited her and had asked her to tell me that he had been there. I am not sure whether it really happened or not. She seemed genuine enough. I don’t know. I guess I could check. I don’t know if I want to.

She had not mentioned him for ages, until after your call. I have tried to tell her that even if she was smitten by him that he does not necessarily share that. She countered with the fact (she had mentioned it before) that the other nurses had referred to them as “boyfriend/girlfriend”. I said that that was probably part of the “cheery dearie” bit that they all go on with. I also said that one is often/sometimes smitten and it is not necessarily returned and that it had happened to me in Montreal (it was returned to some extent, but not enough). And so on. Anyway, if there is any way to steer her away from the X. idea, I think it would be a good thing. Yes, there is an element of keeping her alive, but she has to re-find that element somewhere else. Otherwise she is quite unhappy and distraught that “it has all been taken away from her” by others and that she is helpless and can do nothing about it, which she finds quite depressing. Especially, if that is true in the emotional sphere as well as the physical and intellectual spheres that she has already partially conceded.

Feb. 1, 2001

To sister.

Well, it seems that X. did in fact visit. Today, I came a little early and the new nurse/aide (who is trying to find out what is what) asked in a “cheery ” voice whether I knew that X. had visited yesterday. I was taken off guard and said “yes”, and that it had been a “big deal” for mum. To that she countered that it had been a “big deal” for him too. So, I do not know what to think. And then she said that she had teased mum about “the young man” visiting her… As I was saying that to mum, since none of them can ever say it so that she can hear and understand, the nurse said that “No, no, I teased her All Evening!”
How does one survive this?

Today, mum was in good shape. She had been given a bath by someone who worked slowly and methodically (mum’s description). Mum was happy with that. I took her outside for the first time since the break. It has been uncommonly warm for the past month, today at +10. It is too early to try to walk, but at least she can breathe in a bit of fresh air and not feel so confined.

Tomorrow, we arrive with lawyer to have her sign Powers of Attorney for Biruta’s son to lease out parts of the land, and to me to deal with her affairs. I have an old one, never used, from Neimanis, but, now they require a more recent one.

It is Sunday, February 11. The following are bits about the past week. I had written up the Monday event that night, but then somehow lost the file. Just this very minute I found it again! So, I will substitute it for the bit I had tried to reconstruct.

Monday, Feb. 5, 2001

Today I went to see mum after work at about 5.30. As I came down the corridor, an aide I had not seen before wheeled her out into the corridor (they do that before meals, supper at 6, lining them up to be wheeled in one by one into the dining room). She said that she had no pants/trousers on (her legs were covered with the little red blanket — ok on top, but underneath it is all bare and legs are on the metal supports of the wheelchair). I was cross and said “Why are you telling me, why did you not tell Them!”. She replied, “I did tell Them.” So, I wheeled her back into the room, cursing as we went. I pulled out a pair of long pants and put them on her as far as I dared, i.e. to her hip level, since I did not dare to move her in any way. Then, I thought this is not good enough, and went in search of help. There was a nurse in the hall dispensing medications. She said she would find someone to help. So, a bit later, she came in with the same aide who had been there first. I overheard the aide mumbling something and the nurse saying “It is family here, her daughter is here”, which subdued the aide and they got mum up and I volunteered to pull up her pants all the way. By then, too much time had been taken up by this exercise to leave time to take mum outside for a breath of fresh air. Today, it would have been short, as the cold has returned to some degree and so has the snow. Anyway, I fume and despair and am overcome with a sick kind of wonder at the numbers of variations that they can think of to create glitches. Just when you think you have covered all bases, they come up with a new variation that does not make sense. I assume they thought that it would be easier, since she would be going to bed soon after supper. In that case, why bother at all, leave her in bed all day, since that is where she will end up later….!!!!
On Wednesday morning, we will have the first staff/family meeting. I guess I will have to be really vigilant.

In the meantime, she is doing quite well. Saw where her stitches had been (since she had no pants on). They are along her thigh, below the hip. At the hospital they had referred to the “big bone” to explain pain. So, maybe that is better than the intricate mechanisms of the hip itself. And when the two got her up, they held her, but her both feet were on the ground and they had the walker in front of her. I assume that she may be already able to take a little weight on her leg. I will find out on Wednesday. I do not know what they have done about the antibiotics, but she has been wholly there since I last questioned it. Yesterday she wanted a pain-killer, today not. She certainly will survive this.

Last Thursday I took the lawyer to see her to sign the Power of Attorney papers for Janis Birnitis to lease the land, etc. All that went well enough. Her signing is pretty erratic, but, since it is duly witnessed, it is OK. Now all that (with Latvian translation) goes to the embassy in Ottawa for ratification. Then, I will send it to Biruta. All this takes a fair amount of energy and will.

Wednesday, Feb 7, 2001

The famous meeting between the nursing home “team” and family (me) at 9.00 am. So, there were some 6 people there. Of them I had dealt with one before (nurse) and probably only the physio had had much direct contact with mum. All that dawned on me later. Anyway, they each gave their short reports on mum’s progress and I gave such insights as I could that might help them. The physio was very Anglo, with what seemed like no concept of other languages. She said something about not having much success in some of the exercises because mum could not understand what she was being told to do. So, I jumped in and explained her deafness and that certain sound she would never be able to hear, so repeating a single word with those sounds in it would never work, even if it was repeated for days, no matter how loudly. I do not understand why I always have to explain this to them. They would have to rephrase and expand and put into context. It is a known problem and utterly common. What do they get for training in dealing with the elderly, if they don’t know that? I also pointed out that there are phrases or words that are slangy or idiomatic that mum (or anyone else who grew up with some other language) may not know. e.g. The example from the hospital (but I know they say the same at the nursing home) about saying “I will now give you a little poke” — what the hell is a “poke” when you mean a “needle”? etc. etc. Most of them got it. But again, they looked as if they had never thought of the idea, and most probably hadn’t, that you may need to vary and rephrase. The possible exception was the nutritionist, who was obviously French, though she looked a little startled when I said that I could hear that she was someone who had more than English. And so on and so forth. We went over most of the necessary stuff. I also gave them a copy of Artava, which duly impressed them, and talked about the piano, etc., etc. It was Nelson’s idea that I should do that. He IS good at that stuff. They seemed happy to get my input and all seemed genuinely concerned and willing to make it better. It was not till later that I realized, on thinking back, that they probably do not have that much direct contact, that it is the Filipinas who do all the grunt work and I am not sure how much of all the information filters down to them. So, in a way, I am ending up feeling that it was largely a waste of time. And it turns out (which I did not know) that this kind of meeting is an annual (!) event. So, I will have to chase individual people and harass them separately.

Thursday, Feb. 8, 2001

As I arrived in the evening, mum was wheeled back from supper. The first thing she said was that she was starving! That she had not managed to get almost anything to eat! AAAAARGH. I fed her bread and fruit and cookies and chocolate, as well as her daily dose of vitamins.

Friday, Feb. 9, 2001

Sitting out in the hall, cold. She is now complaining of the cold in the same way as she was at the hospital when you were still here. As far as I can figure it out, it is because she lost a lot of blood in the operation. They did give her some afterwards, but at the meeting, they told me that she had been put on iron supplements, because blood count was still low and that it would take quite a while for it to build up again. Before the fall, she had not complained about the cold almost at all at the M. So, this is not much fun.

Yesterday (Saturday) and today, I asked for hot packs and put them on her aching left knee. They help, like the warm blankets used to at the hospital. I spent some time at the meeting filling them in on her pains from cold — they had noticed that she was saying that her knee, versus her hip, was hurting. The idea is not to fill her with Tylenol when a warm pack will solve it. However, the problem is that she has to be able to get their attention and ask for it. This is so hard and so inhuman.

March 11, 2001

I should write you a proper letter, but I do not have the required mental stamina. So, a short note only. Mum is more or less OK. I took her for Xrays and bone scans last week. Do not know the results yet. I had asked that a doctor see her before that. I waited for him to show up, and then had to leave before he came. He phoned me at home late that evening to say that he had ordered the tests. The reason for all that is the pain in her leg. The kind of pain she had before the break. I assume it is something like arthritis, but I wanted them to figure it out. The pain was getting a lot worse and heat was no longer enough to make it go away. So, they put her on stronger pain killers. I think they are working OK. They also give her a hot pack in the morning, at my suggestion. I bought and installed a white board on her wall to write info on. Some of them read it, others don’t. Anyway, in the past week she has had much less pain and is feeling a bit better because of it. It is all such a constant battle.

Today, for the first time since the break, I took her to McDonald’s for lunch. It was an effort, as I have to heave her from the chair to the car and back again. She cannot stand at all. Anyhow, it was a warmish day and, with much sweat on my brow, we managed it and she enjoyed the outing.

March 25, 2001

I will try to catch-up with all the past two months of info on mum. May not get through it all. For the past week, mum has had little pain. do not know what is different. Mentioned it to L. today (have not seen her for over a week) and she said they were not doing anything different. So, I suggested that maybe it was not using the lift machine. It probably was too hard on her pelvis and hips to hang from it. Her scans and x-rays are done and there is not anything specific that is wrong. She has arthritis in her hip and right shoulder (she has not mentioned the shoulder) and has Paget’s disease in her pelvis. That was mentioned as likely by a doctor about 6 years ago. Mum did not want to go for any tests then. In any case, they can’t do anything about it. It is a thinning and then thickening of bones, which nevertheless become brittle. The current doc said that the arthritis could give her the kind of pain she has had, mainly in the thigh to knee. I looked up Paget’s and it also mentioned a possibility of pain in the leg.

Today, we went out to our hamburger lunch again. Just before we left, they took mum to the toilet. I guess she had hard shit, the kind you dealt with at the hospital, and I assume they were digging it out, etc. Mum was crying out in pain, and said later that they had ripped her bottom to bits. So, she was not very happy.

March 27, 2001

So, here is the first installment of the catching up notes:

January 22.

Mum was in bed (just a week after her fracture) and she said that she was glad to know that you could still go on living like that, without walking, etc., that probably all the writers and musicians had ended up like that too. She said she felt no pain today, though her eyes were a bit wild, probably from the drugs.

Friday, February 16.

Yesterday, mum was in pain from a failed attempt at a catheter insertion for a urine sample. Today, I had the day off. Didn’t sleep well. Decided to go in early, after 10 am to suggest the commode as a way to get the urine sample. They had already tried it in the morning and she had shit in it. I talked to L. (the main nurse). She said she was upset with yesterday’s events (she had been away). She agreed to commode versus catheter. We got mum onto the commode. She was uncomfortable sitting on it. I tried to adjust her sever times, but it didn’t help much. She sat there for an hour or so, covered in blankets. I wheeled her over to the sink, ran the tap, put her hand under the running tap, tried to feed her glasses of juice and water. Nothing worked and she got worn out. The gals put her to bed for a bit before lunch. Poo and no sample. Defeat.

Saturday, February 17.

Had a blow-up with the same aide (nurse?) who put mum out in the hall with no pants on before. She comes on very defensive, frustrated, etc. (“What else am I supposed to do?” ) I had said that mum needed a hot pack because she had pain, probably from cold. It was not a criticism of what the aide had done, it just was not enough to solve the problem. Yes, she had put on leg warmers (a first) and the blanket. The aide did not know about the hot pack as a solution. I was frustrated because I had said all that at our famous “family” meeting and told her that all that had been discussed, but had obviously not filtered down to this level. By that time, the aide was accusing me of shouting at her (I was not, though pretty soon I was) and she was saying “you don’t appreciate what we do”, and so it went. She dashed into the room to point at the whiteboard (the one I installed yesterday and where I wrote the instructions about putting a blanket on mum’s knees when she was in the wheelchair) and shout that she had done what it said (at least it worked! and she actually read it!). I told her that I had installed the board and written on it and would write more detailed instructions about hot packs etc. Anyway, she stomped off and I dissolved in tears, to be comforted by a couple of Filipinas, who kept saying “Sorry, sorry”.

After all that was over, I had to resort to getting Tylenol from a nurse, after a “warm”, not “hot” pack didn’t quite do it…

Monday, February 19.

L., the head nurse, came to mum’s room when I was there and said that Z. had decided that she would not be taking care of mum any more. I asked who Z. was. “She’s the one you yelled at on Saturday, she’s one of our best staff.” I pointed that she was also the one who had left mum in the hall with no pants on. L. said that was before they knew about her leg aching. I was not quick enough to ask why they would put anyone in the hall with no pants on. She said that Z. had asked mum 3 times if she was in pain (I do not believe that one) and that she had done everything she was suppose to do, adding that she thought “an apology might be in order”. I was stunned.

I thought about it quite a bit. Thought about all kinds of things to say, both angry ones and conciliatory ones. In the end, some days later, I finally decided not to say anything at all. I was not going to apologize, I knew that L. had to defend her staff, but she might have at least asked for my side of it. Nelson pointed out that they seemed to be forgetting who was the client. And so, Z. does not deal with mum, and I am just as happy about that, because she is very touchy and rather insensitive, I think.
Well, that is all I can manage tonight. More later. You said you were worried about me. Don’t be. It is hard, but I’m ok.

March 28, 2001

So, went to see mum tonight. She was sitting in the hall, legs bare, nightie and warm shirt + red blanket. I had a fit again. Aide said that it was because she had no pants to put on. I said “What? There is a cupboard full of pants!” “We thought they were dirty ones.” “There is a plastic bag for the dirty ones!” and so it goes. However, she was not cold. Thank goodness. All this is enough to drive anyone crazy.

The other reason she was without pants was that they had given her a laxative in the afternoon, mum said. Then, she could not tell what was happening, though she had suspicions, as her stomach burbled and grumbled. Sure enough, she had filled her pad, etc., with shit. And she felt terrible. This is the first time that that had happened to her. I told her not to worry about it, that it was their job to deal with it, that everyone there wore pads and that this kind of thing must happen often with the laxatives they give…. You can’t win. On Sunday, she was in pain from the consequences of constipation. Today, it is the other end of the spectrum. But it leaves me angry and frustrated nevertheless.

So, next installment of the past few months. If you can’t stand this, let me know, and I’ll quit. It can’t be any fun for you either, since you can’t do anything at all about it.

February 27.

Called doc’s office at around 2.30. Closed. Left message that want an appointment for mum, with me present, to try to figure out why her leg aches so much lately.

February 28.

Called doc’s office again at 9.30. Spoke to woman who said she would check with the doc and get back to me. I called again at about 2.30. Closed again. Left message that I had been phoning for 2 days, etc.

Home after work. Message from nurse that doc would be at the Centre between 6 and 7. I got there a little after 6 (heavy traffic because there is a transit strike on). Waited. Informed at 6.30 that doc would be there in 25 minutes. At 7.10, I checked at the desk and was told that he had said he would be there at 7. At 7.30 I left. At 10.30 got a call from the doc. He doesn’t listen much and it’s hard to get a word in edgeways as he talks on. However, he has ordered bone scans and X-rays at the hospital.

Thursday, March 1.

Visited mum around 4.30. They were getting mum up using the lifter! I stayed outside till they were through and then went in. She was looking ill, with a throw-up pan in her lap! I asked if they were using the lifter, “yes, of course”. I was under the impression that L. had said they were not using it anymore. Mum was looking and feeling really nauseated. Said she had had her insides turned upside down by the lifter. Then, the pain in her leg. I went to ask for a pain killer and gave it to her and after a while, I left, feeling rotten about it all. Mum seemed pretty poorly.

Friday, March 2.

4.30 Mum in hall, no blanket. Mum was OK, but her blanket was in the wash bag. I checked, and it had throw-up all over it. I asked when it had happened. The nurse checked in the log book. She had thrown up at 5.30 and again at 8 last night. Yuk. That is after I left and after she had supper. Nurse tried to speculate that it may have been the Tylenol 3 (the pain killer) I gave her. I said no, that she was nauseated when I arrived, before she got the pills.
Today she was better, but weak and a bit out of it.
L. won’t be back on duty all weekend. She’s the only one that can effect change. Drat!
Earlier, I got a call that her scans and x-rays would be on Wednesday 7th.

Saturday, March 3.

11.45 mum in hall, no blanket, pants with shorter legs, leaving ankles bare (i’ve retired them since), no leggings and pain in her leg.

Tuesday, March 6.

5.00 mum in hall, no blanket. All this is maddening. The instructions are written up on the board. It was all discussed at the meeting. I do not know what else one can do.

Monday, March 5.

Morning. Call from L. Mum has “sustained a large skin tear on her left forearm”. Apparently as aides were “turning her”.
I can’t believe that all this continues in unbelievable variations! They will torture her to death, bit by bit!

Told L. about use of lifts. She confirmed that they are not supposed to use them. Told her of the throwing up on Thursday. She also thought it might be the drugs. Told her no. The Tylenol was given after she was already nauseated, throw-up dish on her lap, etc. etc… (She has not thrown up in the 16 years she has lived with me, not once.)

L. said she would meet with (check with) the team re not using lifts…When I visited in the evening, she had added a note on the top of the white board: *”NO LIFTS — 2 person transfer only”. That is a relief, though I know that not all of them read the instructions. How do we solve this?
At least today (and yesterday at noon) mum was not in pain. So, maybe the medication is working. She was so much happier! We went outside for a bit both days. I was weak with relief…

By now, I dread getting a phone call asking for me. I dread visiting the place, expecting some new disaster or just plain negligence and disregard. The tension of expecting the worst (and getting it, as often as not) is awful and no doubt bad for my health. This stress and work stress at the same time are scary, and leave me with no leeway. I can barely hang on. I have no resources left, in terms of energy and emotional resistance, am stretched to the limit.

Wednesday, March 7.

Got up too early. Couldn’t remember the time of the appointment, as I had left my bit of paper at work, and did not figure it out that I could have called the M. last night to confirm the time…The appointment is at Market Mall, a shopping mall on the west end of town, not at the hospital. Arrived there at 7.30., despite traffic slowed by transit strike. Called the M. at 8. Handibus there picking mum up. The appointment is at 8.45. Before that tore about looking for room #330, no such place. Turns out that it is room #333. Read in the main lobby for a while, thinking I would see the bus arrive. Then, it was getting to appointment time, and I went to 333, waited and waited. When mum finally was brought in by the driver, he said this was the only X-ray room he could find in the building, i.e. no-one had given him the room number…

Then, to the scan. No requisition form from the doctor. Then, how to get her onto the scanning platform? Nurse and I struggled (it was the first time I had tried to move her since the break, and I was quite nervous). Nurse was appalled that “they didn’t send someone”. Anyway, we managed it. Then, the next appointment for the x-ray was not till 11.45. Nurse was quite kind in explaining that we were to come back to the same place. She said it would be good if mum had been to pee. I said that I could not see how I could manage to take her to the toilet on my own, but that there was a good chance that she was peeing automatically anyway.

So, time to kill, rather a lot. Mum usually naps after breakfast and before getting up again for lunch. But nothing to be done. Mum had not had breakfast, though there were two Ensure cans (meal replacement stuff) in the bag of her wheelchair. So, we went to the mall. Bought her coffee and a cinnamon bun and also fed her vitamins and some strawberries that I had brought. It was OK, and mum enjoyed the idea that she was having breakfast out, though I was terrified the whole time that she would have to go to shit!

I had brought an extra blanket from home. It was just as well, as she did not have extra covering for going outside, and the medical building is separate from the mall itself. So, back for more scans, same as before. Then, on to the x-rays. New problem: how to lift her up onto the waist-high table? To get her on, we managed it with the help of two nurses. When it was finished, there was only one thin nurse left, with a “back problem” she informed me, therefore she could not lift anything. No one else around. “So, what are we supposed to do?” She had no answers. In the end, I managed to lift mum off and into the chair, with much sweat and lots of anger.

Back to the front desk to ask re handibus arrangements for the return. “We don’t deal with that stuff. Everyone arranges their own transport”, in a pissy voice. I asked to use the phone and called M. Yes, the bus was supposed to come. It was already 20 minutes late. I had to leave to go to a meeting. Left mum there, to wait. Then, outside, I ran into the driver, who was a bit put out that he would have to go upstairs to get her, but said he would and I left. (I could not have left her in the downstairs lobby, as nobody would have found her and she would have got cold with the drafts of the outside doors constantly opening.) So, that was that adventure.
Earlier, I had had a look at her skin wound. It IS large and nasty. Some 6 or more inches in a semicircle just in front of her elbow.

March 16.

Call from L. Mum has another urinary tract infection. Is on antibiotics since last night.
Today, has been in pain all day (leg). Asked for a pain killer for her in the evening. Checked with nurse, she has been on “extra strength” not Tylenol 3, which is in the “when needed only” category. She has had pain all this week. Last week was a little better, but not much.
Called doc’s office on Tuesday to ask re test results. No info. Called today, doc supposed to call me. No call all day.
I think this is her third course of antibiotics in two and a half months:

1. the break and surgery
2. urinary tract infection, attributed to catheter at hospital
3. urinary tract infection now — why? — this is not normal. I think they do not take enough care in cleaning her when they toilet her and change her.

So, Dzid, that is the end of my backlogged notes. For a little over a week now, she has had very little pain. The last three days or so, she has again been in the hall with no blanket on her knees, but has not been cold and has not had pain. So, yesterday, I cleaned off the instructions on the board and wrote a new, shorter summary. I think I have to change them from time to time, so that they notice.

My theory re the pain is still that the lifting was partly responsible. I hope that is true and that she can be easier now. It is such a relief each time she says she is has no pain. Perhaps things will finally improve.

March 29, 2001

Sorry about all the doom and gloom. In between, sometimes there are kinder bits. Today, I left work early (partly because I had been up at some ungodly hour to attend a “breakfast meeting” at 7.00. So, I saw mum before her supper. She was in the hall, no blanket on her knees, but was warm and feeling no pain. She had been given a bath earlier today, and had had no other problems with the shits. So, it was relief all around. And I went home in a sort of cloud of well-being. We may be getting to some OK stage. I hope so. Anyway, today was good. And there are these moments. And I wish they could and would continue. And maybe they might.
Lots of love to you. Today was a good day.

April 17, 2001

It does not make much difference to me whether you come in June or July. You have been here in June, and, depending on the weather, some of the hiking trails may not yet be open at the beginning. Mum, of course, has set her heart on June, and all my suggestions that you are really coming in July are met with “no, no that is too long”. So, since you have reserved and all, maybe you should stick with June. I always think that if you come earlier, mum will have longer to wait for the next time. But that may not be true any more. Who knows how long she will last and who knows what the deterioration will be in the meantime. So, maybe earlier is better. Earlier has one other advantage. Right now, I cannot take her for any sort of walk, not even a few steps. She does have some sort of “few steps” physio on Monday and Friday, but that is all. I imagine that between the two of us, we could do a little of that kind of “few steps” daily, and that that may get her strength back a little in her legs. And she dreams of walking again. She sometimes asks me to try to help her, but it is not possible for me to do it on my own. I have no other preferences for your arrival. And, yes, I too would be happy to see you as soon as possible! So come.

Thank you for your assorted Easter wishes. I had great plans to write over the long weekend (we actually took 4 days off, including Easter Monday), but I did nothing at all, except read — did not clean the house, as sort of planned, did not write to you and a bunch of others (including those in Latvia — they are so hard! — and others that I am in debt to for months and months), as sort of planned, etc. I guess time out was what was needed. Except that I feel I need about a year in time out! I did go and cut mum’s hair, and I did manage to catalogue the clothes she has at the Centre — that because some of her clothes have disappeared. They are probably in the wash there, though I am supposed to take care of that (and there are signs on her cupboards that say “Family does the wash” — to no avail, it seems). They may or may not reappear. They are all labeled, so I never thought to note what I had brought there. However, it seems that, even labeled, they go AWOL.

On Saturday, Nelson came to visit her and to accompany her for our lunch outing for hamburgers at A&W. Mum was delighted. On Saturday night, Nelson came to my place for dinner and half-way through the evening I got down to painting one of the two eggs I had boiled earlier. He joined in with the other. So, on Sunday, I told mum all about the whole story that was painted on his egg (from sky and stars to heart-shaped, white clouds, to green earth and seashore and ocean and fish catching a worm — top of egg to bottom). She loved it, and then insisted that we keep the eggs. Did that till the next day, when she and I did the bashing of the fat ends and the thin ends, and mum ate the famous egg, with salt I had in little McDonalds packets… She was happy and thought it was a nice Easter. She had also had some chocolate egg on Sunday that Nelson had bought .

So, for the last about three weeks by now, there has not been any major trauma for mum. Amazing. Perhaps we have moved into calmer waters. She has had much less pain, though not none. And the aides still can’t read the board and put a blanket on her knees. I don’t know how to solve that. I have rewritten the message to make it new and different, but to no avail. In the last few days, she has again had rawness under her breasts. They have put some sort of cream on it. When I discovered it, I put on the white stuff we use (Penaten) and in about two days it is almost solved. I cannot imagine why they do not pay attention to preventing, rather than crisis managing. But that is a whole other topic. There must be a job description for someone (a “consultant” in the new mode?) in there. About 10 days ago, the tin of the cream that had been in her cupboard was missing (I don’t think it is one they use). I reported it and they thought the roommate might have taken it. I said that I did not think so, as I had checked her stuff, and it was not around. (At the family meeting, they had asked about the roommate and were visibly relieved when I said that M. was a nice lady, that I knew she made off with stuff, that it did not bother me, that I could hunt around and retrieve it, that I knew she liked mum, that it was not a problem. M. is not a thief, but she is forgetful and often does not know which bits are hers and which are not, as she rearranges them…) So, I had an almost empty tin at home that I emptied and taped

a note to, saying that this was what was missing from her room, and left it with the folk at the desk. Have not heard back yet. These are the idiot small things that I get involved in and caught up with. However, that cream is expensive. Right now, we have no leeway in terms of money at all. I want it back. Especially, as it works much better than anything they have.

May 10, 2001

To answer your question re public transport, yes, there is a bus, in fact the main bus here, that goes directly there, or to within about 3-4 blocks of there — you could transfer to another bus for those blocks, if necessary (at no extra cost). It is the number 3 bus that goes along 4th St (the next street from ours) and the bus stop is opposite the Petro-Canada gas station at the corner (and at the station on the way back). To go to mum, it is in the opposite direction from downtown. I had thought that you might take the bus mid to late afternoon, spend some time with mum and then I could join you after work and we could come home together. But all that is to be seen when you get here. Her dinner is scheduled at about 6 pm and she is through about 6.30, which is when I try to get there. After lunch, she usually gets to have a nap (on some days there is some exercise, and I don’t know how the nap fits in then). The nap may last till as late as 4 pm, but does not have to. At some such time, the gals get her up to get ready for dinner. Her lunch session is at 1 pm. So, there is plenty of time for nap and for entertainment before dinner. You could join her for dinner, if you wanted to, or not. Or go for a walk. The nursing home is only a few blocks to the left (if you face the front) of the hospital. It is at the junction of the road that leads in to the lake at Heritage Park. And there are pathways along the lake on that side of the park (the park interrupted the paths from the hospital in that direction). Anyway, we can figure it all out when you get here.

In the meantime, she has been OK for about a week now. She had the rawness under her breasts and there was a bit of a tussle about how to deal with it. However, the doc has seen her, prescribed a cream, and I have agreed to bring in her bras (my conditions were that the bras could be used only when she had healed). So, at the moment, the dust has settled. It never lasts for long, though. I’ll tell you all about it, when you come. She has pain in her leg fairly regularly, but there is not a lot to be done about it, other than to monitor it and make adjustments to medication, if necessary. The white board of instructions is starting to work (i.e. it is becoming interactive, with them and me writing stuff and, when no longer needed, wiping it off). So, lately, there has always been a blanket on her knees, as per instructions. It seems silly, but it is a victory.

I’ll include a section that I wrote about a week ago. The lost stuff has not been “found” and my notices about it have been removed today. But, I will back off for a bit. I have now put up several versions of notices. Maybe it is time to quit. It was clearly staff that ran off with the stuff. But I cannot afford to push it much further. I now use one of the black bags that I have collected from various places (the current one from Bollum Books, the doomed store, where we attended the lavish opening) to carry all the goodies, creams, etc., back and forth. I don’t

leave any of it in the drawers any more. I suppose that with all these kinds of adjustments, one can eventually find a way to live with it all. At least, a way to deal with the institutional aspects of it. To deal with mum being there at all, I do not think there is any way to really live with it at all. They were right at the hospital to say that the staffing and care that they could provide was better than what any nursing home could offer. If I had a house that was on only one level, in theory, she could still be here. In the meantime, your house could not work either. I assume that neither one of us could afford to sell and re-buy to solve the problem. And that is never just in terms of money. I guess we will have a lot to talk about.

So, here is the other bit:

May 2.

About two weeks ago, I emptied a tin of Penaten cream and taped a message to it and left it at the front desk (that, after already telling them a week or more before, that it had gone missing. However, they did not seem to be quite sure as to what it looked like, so the sample.) The message said that a container of cream like this was missing from Erna’s room.
No sign of anything.

About three or four days ago, I checked under mum’s breasts. It was all raw. I first put on the zinc cream. And wrote a message on the board “Check skin under her breasts”. The zinc cream did not help. Yesterday, I brought the Penaten cream and put it on.

Yesterday, her chest of drawers had been moved back to beside her bed. The top drawer had been sorted and partly emptied: gone were the drinking straws and the partly used package of Vanilla wafers. The ponchos, etc. had been moved to the sock drawer, and pads had been put in instead. I rearranged the drawers. Took out all the biscuits, chocolate and the talking system. Have decided that I will bring all that stuff daily, in a bag from home. It will not be left in the drawer. Wrote on the board: Where is Erna’s Penaten medicated cream? and Where are her vanilla wafers? I told the gal at the front desk that the vanilla wafers were missing. She said the it might be Margo, who has a sweet tooth. I told her that I did not think that Margo could have eaten them all in a day. She agreed, saying that it would have made her sick. I am tired of the blame being put on Margo. It seems an easy out for them. I am quite sure that Margo did not take the Penaten nor the wafers. she was blamed both times when I reported the missing items. I checked Margo’s area both times. The stuff is not there. And what I know of Margo, she does not make off with the stuff. She may misplace it, or offer it to me in a generous gesture, but I am sure she does not take it anywhere else. So, I feel that the accusation is totally unfair, and just means an easy exit for them. In addition, it is not that easy to open the drawers in that cabinet. So, if they were to say that someone else might have done it, I would be very doubtful. Most of them are not strong enough to do it.

Today, my two questions had been erased. Instead, there was the instruction to wash under her breasts, dry and apply paper towels. Not to use cream (zinc). And: Bra needed!!!! I replied that I would bring a bra to test, but only after she was healed. I did not apply any cream. From past experience, both here and at the hospital, their systems do not work, or if they do, they take forever. Penaten cream works in 2-3 days. Today, I have decided to give the M. system a chance. I did not use Penaten cream on her. I will not keep this up for long, if it does not work Erna is too old for experiments to test theories.

This is all very difficult. I can see that I am being set up in a sense, because the bra is supposed to be the answer. It is part of the same stupidity that has prevailed forever ? the instruction to put a blanket on her knees has now been up forever. In the past few weeks it has almost never been followed (the weekend staff seems to be a bit better). What do I do, ask if they can read?

About a month and a half ago, I labelled all of mum’s hangers. At the time, there were none to spare. Now there are lots spare. I had not inventoried her clothes at the beginning. Several weeks ago I took inventory and wrote it all down, because there were bits that I knew were missing. I will have to redo that, since now some of the stuff, though not all, has come back. I assume it goes into the laundry. The problem with that is that both her cupboard and her chest of drawers are labelled with THEIR labels that “Family does the laundry”. So, why does some of the stuff end up in the Centre’s laundry? It is hardly a “mistake”, since it means a conscious decision to take it out of the room and put it in a bin outside. I can understand that there may be times (one recently) where, because she shit all over her pants, it may be useful to have the item washed, in house, rather than leaving it for my arrival. But, mostly that has not been the case. And, in the process, she has lost some of her own pieces, and two items that had been assigned to her (with no labels) that are now gone: a sweater in rayon/cotton that she really liked and a sleeveless undershirt that was useful. Neither was hers originally. They appeared and disappeared in the void. Too bad. Next time something appears that may be useful, I will present it for labelling. Previously, I have always taken the items back to the front desk, saying that they are not hers. This system seems to engender deviousness for the sake of survival.

End of quote.

Right now, mum seems to be really OK, and she knows when you are coming and looks forward to it and to you and to trying to walk, i.e. us holding her under her two arms and marching her up and down. And that will be a very good thing. Until her drop/fall and hip-break, we had walked a bit every day. Now, I can’t risk it on my own. She and I wait for your arrival, so that we can hold her up on each side and she can practise walking again. She dreams of walking again. That, no doubt, is not realistic. However, a bit of activity and diversion is OK.

August 8, 2001

Had a brief chat with C. — she knew all about what you had achieved with mum. And that is good. That kind of info is good. It is a small world, and it is an even smaller M. I am sure that your impact was multiples of that. And that is wonderful. That is something I could not do without quitting work. Your effect is tremendous for being there for a long while. And mum is happy to do her exercises. On Tuesday she could not remember that I had been there earlier on Monday (holiday). So, she had worried that something had happened (I assured her that Nelson would tell her, or, and, she volunteered that “someone would phone”). Then, I mentioned that we had done exercises on the chairs on the lawn. Her face lit up and she said that she remembered that. Nice feeling. Nice legacy from you.

September 3, 2001

All is well. It was very hot until a couple of days ago. Now, it might start to cool off a bit. That makes it the awkward in-between time, when no one knows how to dress, least of all the aides re how to dress their oldies. Still, so far so good. Mum has been OK. She had a raw bottom last week. I put up a note on the board. I am sure they put on the usual creams that they have been using for the last 4 months to no avail. One of the aides said she includes it in her report every time. So, I said that I would use the Penaten cream and removed the note from the board. So, heaved mum onto the bed, pulled down pants, carefully undid the tabs on the diaper and put on as much cream as I could. I know they will wipe it off, etc. But I will continue. In fact a couple of days later, it was much better. Though there is still rawness deeper inside. Will continue to work on it. Will probably also call L. to tell her and to ward off their reflex action of calling it urinary tract infection and prescribing anitbiotics.

Other than that, we have been going outside every day. I have figured out a way to hold her so that we can walk from one bench to the next, and after a rest, back again. Have been doing that every day, or almost. Also doing exercises. She lifts her left hand to touch her head, her nose her mouth, her chin, her ear, her chest, with her knee in between. And for the leg, somehow, once sitting and having her cross one leg over another, I started to sing “Tudaliņ, tagadiņ, pastalnieki danco” (i.e. right foot over left, then left over right, and instead of doing the polka, she lifts each knee and stomps it down in turn. And so on through the verses. There are not that many, I had forgotten some, but after about a week she came up with the words. In the meantime, I had made up some of my own, which amused her: “Cits ar kreiso, cits ar labo, cits ar abām kājām”, or “cits not rīta, cits pēc pusdien’s, cits līdz vēlai naktij”. So, that seems to be working quite well, and she enjoys it. She also says she does some of same in bed, when she is not asleep.

Today, I found my old Latvian song books, I have two, one shorter with music, the other longer without. So we sang one of the songs (Ozolīti, semzariti, kam tu augi lejinā). It had two last verses that she did not know, but which she found very nice. I think we are on to something. I had, earlier, thought about reading to her. Tried it. It is too hard. She can’t understand any of it, English or Latvian, unless it is all explained over and over, because she can’t hear it well enough to get it the first time. However, the songs, even the ones to which I can’t remember the tune, or ones that I never knew, she will probably know, and so it will probably work out. So, we will be very busy in the next while.
In the meantime, she has stayed much more alert and aware after your visit. She remembers when I tell her what I will be doing and when I will be coming, etc.

September 15, 2001

Mum is doing well. I quit on the idea of fighting “them” re her rawness. Mum now tells me when she has a problem and I administer the Penaten cream (it means getting her onto her bed and getting her trousers down and undoing the tabs on the diapers in a way that I can re-do them and then reversing the rest of the process). And we have done that some three or four times. There is still the problem of getting deep enough. So, I have diluted the cream with mineral oil (the stuff that was for putting into her ears) to make it runny enough to get it into a dropper that I could insert deeper than just surface level. So far, we have not yet tried that. The last outer application has staved off the rest for the moment, though I don’t think that is more than temporary.

Mum is in pretty good shape. Your efforts with her have had a lasting effect. She is still sane and remembers a lot more from day to day than she did before. So, you should feel satisfied. Your e-mails delivered as I described. The ones I referred to before were not over a weekend. They had come Monday to Wednesday, but were not delivered until Friday, presumably by J. Now that she is away, not much happens. Last week, mum said that she did not have her “special” lunch and no walk. Today, I forgot to ask her. However, we are walking and doing our exercises every day, so it may not matter that much. Your September 1 and 3 e-mails were printed back to back on the same piece of paper and delivered some days later. So, the “daily” version obviously does not apply. The last two, Sept 4 & 5 came on the same day with a “reply Sept 12” note on them. Mum said that they had been read to her, I do not know by whom, and I do not know how much she can get out of them. The times I have tried to re-read them to her, she understands about nothing, unless I re-phrase it and explain it. However, if you can stand it, I think that the idea that she has had a message from you gets through and hopefully your other messages for “them” are also noted.

October 8, 2001

So, as for the rest, mum is ok, though her bum is in bad shape. I have been applying cream, but I suspect they scrape it all off. So, tomorrow I phone L. I don’t even know if she still works there. If not, I’ll ask for the doctor. I dreamt about it last night. I was talking about it to an elderly woman doctor, who agreed that something had to be done and wrote a prescription. I asked her if it included antibiotics and she said that it did. And that was what I did not want….

On Friday, your week’s worth of emails was on her dresser, including one from Talis for her birthday. I asked her if they had been read to her and she said no. I don’t know if that was the case or if she had forgotten, though in the past she has usually remembered. So, I read them all, and it was a battle. I also had a letter and card for her from Biruta. That was a little easier. Still, afterwards she said that there had been so many visitors (in letter form) and was pleased.

October 11, 2001

So, as for the rest, mum is ok, though her bum is in bad shape. I have been applying cream, but I suspect they scrape it all off. So, tomorrow I phone L. I don’t even know if she still works there. If not, I’ll ask for the doctor. I dreamt about it last night. I was talking about it to an elderly woman doctor, who agreed that something had to be done and wrote a prescription. I asked her if it included antibiotics and she said that it did. And that was what I did not want….

On Friday, your week’s worth of emails was on her dresser, including one from Talis for her birthday. I asked her if they had been read to her and she said no. I don’t know if that was the case or if she had forgotten, though in the past she has usually remembered. So, I read them all, and it was a battle. I also had a letter and card for her from Biruta. That was a little easier. Still, afterwards she said that there had been so many visitors (in letter form) and was pleased.

November 20, 2001

Mum is OK at the moment, apart from a bronchial infection — upper tubes, L. said. It gives her a cough that is hard to control, with a really full-sounding chest. She developed it suddenly at the end of October. I asked the evening nurse to check it out on the first day and called L. on the second day. L. said that mum had been prescribed more antibiotics! I think she said two different kinds, one for the bronchial infection, the other to keep the yeast infection at bay. I assume the yeast infection is basically over. The bronchial infection, however, is still there and is only mildly less than it was, and it must by now be close to four weeks. They have changed her bed and given her one where the head end can be raised. I assume that is to raise her when she is lying down to make breathing easier. When mum is sitting up, she does not have any problem breathing, and the times when she was in bed when I arrived, there was no problem either.

I have been giving her an expectorant cough mixture and daily dollops of yoghurt, as well as the usual vitamins, with the addition of echinacea and extra zinc. The coughing fits are not frequent. We have been going outside for about 10 minutes, wrapped up. It is not yet cold, in fact, this past week, it was 12-15 and quite pleasant.

We are working our way through the Latvian song books a second time. Mum remembers the words very well, sometimes adds to them, sometimes comes up with other songs. This time around, we are both singing the ones to which we know the melody. The other day, she said she had been singing them in bed. I don’t know if she sang them awake, or if she dreamt of singing them. She said that it had been a good feeling.

November 25, 2001

Have changed mum’s wardrobe for winter gear. Have to take the summer stuff home, otherwise, they still try to use it! Have to make it all easy and obvious for them.
Mum is doing ok for the moment. I am still feeding her anti-cold/infection/pro-immunity stuff. Her bronchial infection is getting a little better, but it is very slow. We are singing the songs and I read the ones to which I can’t remember the tune. Mum is enjoying that a lot — for the language, which she says is good and true, and for the concepts, which are often quite insightful, expressed very minimally.

December 10, 2001

On Saturday, it went up to about 5 or 6 above zero. Some of the snow melted. On my sidewalk, there is a spot where there is always melting, then, at night it freezes again. There was some light powdery snow overnight. On Sunday, I set off to see mum, my hands full of her laundry and other stuff. Promptly slipped on the ice under the snow and landed on my hip. No breaks, but sore bruise. On my way down, I thought, have to keep my head up or I will hit it on the cement platform beside my steps. It is amazing how fast it happens. One moment you are upright, the next you are flat on the ground. This is only the third fall I remember in these circumstances. The first was on the sloping drive outside the school where I taught in Damme Germany. The second at the base of my steps in Montreal on my way to some event at Concordia. Michelle had phoned to warn me that there was ice everywhere that morning. I set off, fell heavily and changed my mind about going out at all that day. And always it is the incredible suddenness. There is no time to grab or prop or anything. It is upright and then prone in an instant. In Montreal, I did shoot out my hand a little to stop myself, and it only resulted in a very bruised wrist in addition to the rest.

Anyway, so I set off to see mum and wondered if I should try to take her for our hamburger lunch or not. At our end of town, it was snowing fairly heavily. At the M. end, it was much clearer and they had had less snow. So, I thought OK, let’s do it. Got her to the car and into it. Then, went to put the wheelchair in the back. Could not open the back hatch. Thought of hauling her out of the car into the wheelchair and putting the seat down so that I could crawl to the back and open the hatch from the inside. In the end, I gave up, because I was not sure that the hatch would not be stuck again when I got her to McDonald’s, and then I would have no way to get to the back of the car, with her in it (since the back door on the other side does not open anyway). So, put her back in the chair and took her inside for her normal lunch. Must have been some sort of gremlins about that day.

Mum’s cold is finally getting better. Today, I called L. to ask if mum was still on the large doses of Tylenol. She is. L. said that it was not a “toxic” level. Nevertheless, she will check with the doctor to see if they might cut back on it for a bit. Your insights as to keeping the weight off her left hip have been useful. Not that everyone takes note, but on the whole, she has had more or less no pain.

December 24, 2001

Merry Xmas and a Happy New Year to you!

Nothing much new to report. Mum is OK, though she again said that her bum hurts a bit. As far as I could tell, it got better in between. They are applying some sort of zinc cream and have changed to cotton cloth diapers. Perhaps it was again the antibiotics they gave her for her chest infection. So, we start again. There seems to be no end to the cycle. Otherwise, she is fine. We are having rather a good time singing the Latvian folk songs. Now that we are going through them a second time, she knows most of all of them. I wish I had music for more than I do (and that I can remember). Perhaps there is some song book that the Latvians in Sydney use? Perhaps Grauds knows of one, since he sings or sang in the choir.

Last Sunday, I took her out for our hamburger lunch. All that was fine, except that I forgot my gloves on her bed. When we got back they were gone. Pain in the neck!
Nelson said that he would have her over for a Xmas dinner sometime this week. That would be nice. I had decided that I would not try to bring her home here, as it is just too hard. But at Nelson’s I think it could work. And I can wheel her in and out in the wheelchair.

December 28, 2001

As for mum, I asked her yesterday, whether her bum hurts, and she said that it doesn’t. I suspect this time it was more of a topical rawness than a yeast infection. In any case, since her last infection, I have been feeding her yoghurt every day. The dinner at Nelson’s has been put off for a bit. Maybe next week. And that’s fine with me, and mum does not know about it anyway.

January 27, 2002

In the meantime, after a relatively mild January, on Friday real winter hit. Temperatures went down to the -20s and we had snow Friday, Saturday and last night. Last night it was -33 and today at noon it was -29. So, we did not go for hamburgers. However, it was sunny and very beautiful, with everything still a pristine white. Mum can’t see that, but we did sit in the sun for a while in front of M. There was no wind and it was quite warm and nice.

February 21, 2002

Mum is ok for the moment. We are singing and learning the Latvian folk songs and that seems to be good. There is a theory out there that music keeps your mind going. It may be true.

Last Monday, mum was all happy that she had listened to some gals play the piano. She said she could really hear them and liked it. I called J. to tell her how great that was, and she said that they had been doing that for a while. So, for whatever reason, music or hearing, mum registered it that day with pleasure.

Mum has said for a while that she does not have any pain (I keep asking her). However, for a while too, the Canesten cream had appeared on her chest of drawers. Then, today, L. called me. They have booked her in to see a gynecologist on March 13, because there is a part of her bum (perineum) that is not healing and they are now wondering if they are giving her the right treatment.

March 12, 2002

Tomorrow, I go with mum to a gynecologist, chosen and booked by M. They are worried that her bum has not healed. They want to know if their treatment is ok or not. I am happy that they are consulting some outside expert. Mum has not complained at all about any soreness, and I do ask her regularly. They have had a notice on our board to say that, when she is in bed, they should put a pad under her, but leave her exposed to the air. There are also notices not to use the cleaning cream and to use cloth diapers – though that one has now changed. However, L. called me recently to say that she again has a urinary tract infection (and I assume, they are again giving her anti-biotics). So, I look forward to some insights from the experts.

March 18, 2002

Anyway, mum’s doctor’s appointment went well. They took her there in a handy bus and I met her in the lobby to take her up to the doc. The guy was an Indian (or Pakistani, I have no way to know which), and he told me that he thought it was very good that I was looking after mum (he knows she is in a nursing home). Anyway, he was great. He took one look and showed me the raw part (and, to get to it, he had to clean away incontinent piss and shit, the latter probably expelled because of all the heaving I had to do, with somewhat ineffectual help from his “nurse”, to get mum up on the examining table… The usual). I had told him that I thought that mum had had antibiotics about 6 times in the last year and a bit. He agreed that that was not good. We were through quite quickly and I phoned the M. to find out when the handy bus would come to take her back. Not for another hour and a half. So, I said to cancel it, I would take her back myself.

Anyway, the doc got on the phone right away to L. (the nurse at M.) and said that the rawness was a result of incontinence. But, more importantly, he said no more antibiotics, to use lots of zinc cream instead, and, presumably from a question from her, no more Canesten cream either. Wow. Then, he said that she should see a urologist. There was one down the hall and we should make an appointment. His nurse and I went down there (with mum) to try to make an appointment, hoping for perhaps immediate attention, as the doc had suggested. The earliest the urologist could see her would be September. The nurse asked if there was any way it could be earlier, or if they had a waiting list for cancellations. No. I said she may not live that long. No effect. I asked if there was someone else mum could see in town. No. I said that surely this was not the only urologist in town. (In fact, they are apparently as rare as hen’s teeth – a great career for someone looking for a niche.) No effect. So, back we went to the doc’s office. He got mad and stomped off down the hall to try for himself. No luck. We were going to leave, in fact were out the door, then, he said, wait a bit. We waited. There seemed to be another urologist further down the hall. The doc made about four sorties down the hall to try to make an appointment for us. First the receptionist was not there, then the urologist’s nurse was the only one who could schedule times and she had gone to the hospital but would be back soon, etc. etc. In the meantime, the doc sat us down inside his area (not in the waiting room, where this whole thing was becoming a spectacle. I think we were in and out of there about three times, with people opening the door for us each time) and eventually the urologist nurse came by, the appointment was made for the 26^th of March and we were suitably grateful. The doc called L. again, to tell her of the appointment and to say that mum should have a catheter till then, to give her perineum a chance to heal a bit. (Later, when I brought mum back and talked to L., I told her that the doc had been wonderful, and she said that she was amazed that he had phoned her – twice!) Anyway, by the time we were through, it was about the same time as the cancelled handy bus would have come by. Still, I was hugely grateful to the doc for his efforts and thanked him and shook his hand and all that. He had really understood and taken us under his wing. His main reason for trying to get an appointment immediately was because he said that, since she was 95 etc. it would be so much easier to do it right away than to have to drag her out a second time. Wow.

So, now mum is on a catheter and it seems to be ok. I must say that my initial reaction was one of a bit of dread, since the last time they put her on a catheter, they first did not succeed and injured her, and she got infected. I know it is sometimes difficult. So, yesterday, I was not sure if we would be able to go for lunch or not. When I arrived, mum was still in bed. I hung around till a nurse/aide showed up. It was Z., the one I had a screaming match with way back, the one who looks sort of sour all the time. I asked if someone was going to get mum up. She said they were all at lunch. I pulled a face (I could not help myself!) And she paid attention (I can’t remember exactly what she said). I said that I usually take mum for lunch on Sunday, and that, because she was on a catheter I did not know if that was possible, and if not, I could just visit with her and that would be ok. Well, she said: “Oh yes, I had forgotten about that.” I asked her whether she thought I should take mum out, she thought about it for a minute and she said: “I think it should be ok. I don’t see why not,” and went into action. There was a question about what to do with the catheter bag. I suggested that a few days ago mum had had one strapped to her leg and that that might work well. She agreed. Then, the search for a leg bag. It seems they are kept in some store room, no one had the key, there was some master key that they tried… Z. came back with two of the bags and insisted that I take one and keep it with me (presumably for the next time), saying: “Yes, you should take this. You know, we had to pick the lock to get in there…” And she went to a lot of trouble to get mum up and sorted out. So, all’s well that ends well. I am quite relieved. She will probably never smile at me (or maybe anyone else), but I feel that we are over the “problem” and I will not have to take it personally if she marches by scowling. And such are our little traumas, except, in mum’s case, the “little” traumas are not so little, since there is not much else.

April 4, 2002

Mum and the catheter. She only had it in for about a week. Then, on March 26 I took her to her appointment with the urologist at the Rockyview. The test is called a cystoscopy and although they smear on some local anaesthetic, it is still uncomfortable, especially if you have raw bits, I guess. Anyway, they said I could stay with her, and I held her shoulders and tried to be reassuring as the doctor examined her urinary tract and bladder via a small scope. She was sore for part of the day afterwards, but when I went to see her in the evening, she was ok. I guess they look for infections or cysts (I assume from the name). He said that her bladder was inflamed (but not infected). He could tell that she had had a catheter (though that was almost a week before). He said he would test her urine for any sign of kidney problems. Other than that, he was prescribing a hormone cream that would help her resist infections. I told him that I fed her yoghurt every day and he said that was good. I hope it makes it all easier. The doctor was very good.

April 26, 2002

All is well enough with mum. She has no complaints about any pains. I have not recently checked her bum. However, they lost her hearing aid last week. No sign of it yet. There are endless variations of frustration, I guess.

May 2, 2002

Music great, but hearing a problem.

May 16, 2002

Mum’s hearing aid saga continues. I have talked to Calgary Hearing Aid to tell then I want to replace it. It will cost $1050 and Aids to Daily Living will pay $756. I have talked to and sent a letter outlining all the details to Y. at the M. (she is the Director of Nursing). She is pure PR and defending the owner’s position. I already decided that when I talked to her after mum’s broken hip. So, I suspect I will get nowhere. However, I will still try. In the meantime, the person from Calgary Hearing Aid who does the testing has to phone me for an appointment.

Last week mum was in bed for three days with a fever from urinary tract infection again, while they struggled to get a catheter urine sample to decide what drug to use. However, she says that she has no pain in her bum. That is a relief. On Sunday we went for our usual burger outing, with the addition of a couple of slices of gourmet Kahlua/coffee cheese cake for Mother’s Day. I decided not to buy a whole cake, and even then, she is still eating bits of the two slices three days later. But it is nice.

May 17, 2002

Here is a copy of the letter I gave Y. re mum’s hearing aid. She has indicated that she does not think that the owners will agree to any responsibility for “private articles”. L. had said that I should go and talk to R. because she said “we lost it”. But I did not want to say that to R. at the time. Maybe in round two.

May 9, 2002

Y.
M. Care Centre

Re: Erna Dzelme’s hearing aid disappearance

Erna’s hearing aid has now been missing for almost a month. We presume it is lost. I was advised that I should see you about a replacement. The following is an outline of events:

About mid-April, I checked her hearing aid and found that it was not working. I put a new battery in it a few days before. I took it to the front desk and told L. that I would take it to Calgary Hearing Aid for repair. She said that she too had recently put in a new battery, so it must be some other problem.

Next day, I went to where there used to be an office for CHA in the Heritage Centre. It was no longer there. I called L. to see if she had an address for them. She only had the phone number of another hearing aid company. I looked up the CHA in the phone book and went to their Forest Lawn office.

The man there tested the hearing aid and cleaned out the wax. He said that the wax was the problem. He told me to tell M. staff that mum’s ears needed to be flushed out, and that that was somethig they could do.

That evening, I put the hearing aid back in mum’s ear and told front desk that the hearing aid was back and working, but that her ears needed cleaning. The nurse said that they would have to OK it with her doctor and that they would then put in some mineral oil, etc. The next couple of days mum did not have the hearing aid. I assumed that was because of the mineral oil treatment and did not go looking for it.

Then, on about the third day, I did check for it in her box on the cart. It was not there. I asked about it at the front desk. They said that L. must know and that they would ask her. Next day, the same thing – L. has probably put it somewhere and they would let her know. Third day, same story. Then, I was gone for a seminar for 3 days and did not visit.

On Monday, I called L. from work. She was not there. Called again Tuesday. No-one had told her that the hearing aid was missing. She thought I still had it off for repairs.

I searched mum’s room, clothes, the cupboards and assumed that the staff were also searching. I was due for the annual review meeting on Wednesday, May 1 and assumed that L. would be there with some info about it by now. I put a notice on the board in mum’s room and searched the room again. L. said they had looked everywhere as well with no success.

Yes, I am upset about it. Especially as on at least three occasions in the past year she has had someone else’s hearing aid in her ear. I think that is appalling. Once, her hearing aid had ended up in another resident’s ear who had been taken to hospital for a few days. Another time, I found the hearing aid she had been wearing in her bed. The nurse said that mum keeps taking it out. I looked at the hearing aid. It was not hers and did not fit into her ear.

After the last switch a few months ago, I put her name (ERNA) in fine permanent marker on the inside surface of the hearing aid. I had tried writing on the outer edge once before, but it rubbed off. This time it worked and stayed on – though, in the end, to no avail.

Her own aid fits very snugly. L. agreed with me that she was not capable of removing it herself. I think it is time to replace the lost hearing aid and would appreciate your approval for that as soon as possible.

Friday, May 10

Following our telephone conversation yesterday, I have been given a quote by Calgary Hearing Aid for a replacement. They say it will cost $1050 (ballpark). I have also checked with Aids to Daily Living and they will cover to a maximum of $756. That leaves a difference of just under $300.

You said that you would check with the owners of M. about covering the cost. You also mentioned that, generally, M. is not responsible for personal items. Specifically for that reason (not because she owns none), Erna has no jewellery, watches or other items of value with her. However, a hearing aid is not the same as a ring. The latter is an optional adornment. A hearing aid is medical equipment, necessary to her well-being and functioning, including communication with the staff. The staff is responsible for putting it in and taking it out and storing it in between. It is not something that the family can do for the resident.

I feel quite strongly that M. should pay the balance. If I had borrowed a piece of equipment from M. and had lost it, I assume that I would be asked to replace it, and rightly so.

I look forward to your help in getting this matter settled as quickly and fairly as possible.
Yours sincerely,
(IB + phone numbers at work and at home)

[Result: they did not pay. They offered to “lend” me the money, with a schedule of monthly repayments. I had to accept, as there was no alternative suggestion.]

15^th August, 2002

Response [to renewed bottom rawness, etc.] from the administrator, the one I think is all about PR. However, the cloth diapers have suddenly reappeared, so that is good.

Subject: Follow-up to your concerns

Hello Inese,

Please be aware that your mother’s plan of care includes the following:

1. Cloth incontinent supplies with cloth insert.
2. Peri care with clear water only followed by critic aide barrier cream. (of note a swab was collected today and a phone call to the doctor to rule out a fungal rash.)
3. Perineal area to be exposed to the air when in bed to promote healing.
4. Yogurt or fruit dessert only has been ordered through our kitchen.
5. Assistance with water glass at mealtime and offering her water with a straw throughout the day has been reinforced with staff and appears on her careplan.

Please let me know if there are any further concerns. Thank you.
Y. DOC

August 27, 2002

[Inese had been away for a course for 4 days – Nelson took over daily visits]
Mum is fine. She volunteered that she had really liked having Nelson around, that he had been really nice to her, had driven her around [in wheelchair] the yard and sometimes sat and breathed the fresh air. And right now she knows that Nelson was away giving a lecture and she asks about how that went, etc.

September 14, 2002

As for mum, she is basically ok. However, she had a chest infection & cough (something going around, apparently) and is on antibiotics. I went in to talk to L. about mum’s bum. Told her about the Penaten cream alternative. She said that the doctor had just put mum on a vaginal cream (she has a urinary tract infection once more) that is new. L. said that she knew that antibiotics killed all the other protective vaginal stuff. I told her that I was feeding mum some yoghourt snd some acidophilus capsules. She said “Do it”. Today, she told me that mum’s bum was finally getting a bit better. I guess we will see.

October 14, 2002

Sorry to hear about Freijs [he died suddenly]. That must have been a shock to Ruta. How is she doing? I have not told mum. Did not think there was any point – either she won’t remember who he was, or she will be upset if she does.

Mum is doing OK, though her bum is not. I talked to L. about the Penaten cream. She thought at that time that the other cream that they were using was working. And for a while it was. Now, she said she would talk to the doctor again. And, now, I will have to talk to her again. Maybe she is ready to give the cream a shot.
I have decided to divide mum’s vitamins between two days, half each day. She has been struggling to swallow the all. So, taking half as many at a time is easier.

For her birthday, I bought a couple of slices of nice cake that she then had for the next few days. Your emails, including the one for her birthday were handed to me on Saturday by the guy in physio to read to her. So, I guess they had not been read in the past week.

Oh, yes. Mum says to apologize to you for her being out of it when you phoned. She said that at first she did not even figure out that it was the phone, and did not understand that it was you, etc., etc. I know that you understand anyway. She has also said in the last two days that I must tell you that you should buy yourself some fruit and candy “uz svētkiem”. I don’t know if she means Thanksgiving now (I doubt it) or for Xmas “soon” – probably the latter, since now that it is getting cold and there is even snow, she must be thinking about Xmas.

I phoned about her hearing aid on Oct 7. And, or course, it had “just come in” (from wherever they send it for repairs). I went and picked it up and the guy said that it had had a fair bit of moisture in it, and to tell them at the nursing home to take it out when they give her a bath… No mention of cost! I was relieved. I think it must still have been considered under warranty, since it was only a few months before that she got it. Whew1 I told L. about the moisture and that that meant that it had probably gone through a wash as I had suspected. She made the right clucking noises and I told her to put up whatever signs, warnings, instructions she thought necessary.

I also got a call from the guy who made her dentures. He had the payment of the refund. Made an appointment to see him, then he cancelled, then made a new one. Eventually, I did go to see him. [He had moved to a different office and was surprised that I had found him.] He paid out $460 IN CASH. I looked at him in surprise and asked him why in cash? He said that he had received a payment of some four different claims together in one cheque. I had to accept that. However, I thought he was making it up. So, I decided to check with the Seniors Benefits people, saying I wanted to check if I had been paid the right amount on the claim. Well, they looked and found a claim for the lining of her teeth that had been rejected, because it was too soon… (He had said that the first claim had been rejected because it was too soon…) And there was no further claim! So, I don’t know what that means, but there is not much else I can do. Maybe he paid me to get rid of me, though that seems unlikely! Anyway, case closed, I guess.

October 24, 2002

Mum is OK. The doc has seen her, and looks like there is more Canesten cream on her dresser. So, I’ll talk to L. again, though I suspect I will have to wait for the cream to be used up, before they might consider trying the Penaten. So it goes.

December 9, 2002

As for mum she had a bug last week. L. called me on Monday, which I am grateful for. There has been a bug going around – it has closed down some cruise ships (Disney) and has closed the geriatric wards at the Rockyview Hospital, as well as creating problems at some nursing homes. Well, after all that, it was probably the bug that mum got. She had thrown up three times on Monday night, had fever. I came and went. On Tuesday, she was fine. On Wednesday, she was freezing (the gals had put a blanket over her shoulders a bit before I came). On Thursday, she was in bed (after lunch) and sort of out of it. On Friday, she was ok. On Saturday and Sunday (our McDonald’s outing today) were all fine.

As far as I can tell at the moment, her bum stuff has been solved by the dermatologist’s prescriptions. However, I do not expect that that will be a lasting result. So, more battles to come.

She has had a flu shot. I also had one this year for the first time. I asked for the shot this year. However, you can’t have one for free unless you are older or have another compelling reason. The doc, a new person, said she thought that we should all have the shot. We had to find a “reason”. So, the fact that mum was 96 and that I visited her in a nursing home (with all the other frail inhabitants at risk) was enough. I got my shot.

December 12, 2002

Mum is not in great shape. The bug she had keeps recurring. She was sick again on Monday (had thrown up quite a bit – and yet, on Saturday and Sunday she was really fine). Then, still not well on Tuesday. On Wednesday, I went to see her at noon. She was bent over, drooping in the wheelchair in her room, bleating weakly. I asked her what was wrong and she said “water, water”. I gave her some, she said “more”. She drank 3 (!) glasses. I don’t think she has ever drunk three glasses in her life. I told the nurses, but who knows how much of any of it registers. In the evening, she was in bed and I did not bother her. Today, I called L., who said that she was still weak, tired and that her colour was not good. Tonight, she was still droopy, but no fever and we did manage vitamins, yoghurt, going outside, your last two letters and one song.

December 13, 2002

Mum is a whole lot better tonight. Though she was better last weekend, too, and then got sick again. Tomorrow I’ll see her at noon, and it is supposed to be relatively warm, so we will be able to spend more time outside.

December 21, 2002.

Just a note to tell you that mum is a lot better, last night and today. She is still weak, but nothing like before. So, maybe these are some sorts of attacks that come and go. We’ll see.

December 23, 2002

She has been in bed for basically two days. Today, she had had a bath and L. had asked that she soak a bit because her bum and backside were affected by lying in bed (bed sores stuff). Yesterday evening and today at lunch and evening, she did not want to get up. Today, she said “later” and I told them to try again in about 10 minutes. When I got there, she was asleep, snoring. I woke her up to ask about supper, etc. She said NO. She did say that she was comfortable and that she did not want that to be destroyed.

This evening, she was really comfortable. They have put a soft quilt under her (because of the bum sores) and I think that mum is somehow really enjoying that.
However, it may be an “endgame” that we are in. And it may also be a “false alarm”. I have no idea. I will keep showing up several times a day, and I will let you know how it goes.

January 1, 2003

[I visited her at lunchtime – got the kitchen to give me just a plain piece of bread and butter (her favourites) instead of the regular lunch, but she did not really eat anything. Tried to tell her that it was “ok to go” – but could not manage to say it – told her instead that “everything was ok and that she did not have to worry about anything…” I think she understood. About half an hour after I left to got home, around 2 p.m. she had died. L. called me to tell me.]

January 7, 2003

Mum is “home” now. I brought the container of remains home yesterday and put it on the piano. And I slept slightly better last night, though still not well. But there is the sense that it is over now.

Last Wednesday, Nelson and I went to M. and took all her stuff home in the afternoon. And we were glad that we had done it immediately. It would have been a lot harder the next day.
Thursday, we went to the funeral home. The guy who was the director was very helpful and did not try to “sell” us anything.

We told them we wanted to take pictures to send overseas. They agreed to dress her in the clothes I gave them (her favourite green dress) and bring her back from the morgue and put her on a table with white covers, etc. It cost an extra $150, but that seems cheap for the effort involved.

Nelson bought some roses to include and we took the photos. It was a bit hard because the table is rather high (I think he called it a “dressing” table, and I assume it is waist high to make it easier for them to work.) They had left us on our own in the room and Nelson took a small coffee table to stand on. We were a bit nervous that they might come back and not like us clambering over their furniture. Anyway, we managed as best we could.

I also went to see J. and talked to her a bit. She said she had emailed you. On Sunday, I spent most of the day washing mum’s clothes.
I also packaged up all the leftover diaper pads, soaker sheets, denture cleaners and denture fixatives, spare hearing aid batteries, etc. I was a little worried that they would not be allowed to accept them for some sort of hygienic reasons, but the gal I spoke to was happy to have then. So, I was relieved – in our usual fashion, it seemed too much of a waste to just throw them out, and trying to find someone else to give them to would have been a pain.

So, there it is. Today, my main task is to contact pension and other agencies, both here and in Australia, to let them know. Then, there are still letters to write to Latvia, both to the relatives and friends, but also to the municipal folk (they sent a Xmas card to mum), and everyone else in other places. That will take a while. I will send you some photos as soon as I can manage.

January 30, 2003

I am now wavering about a Calgary burial for mum. I am not tied to that at all, other than that there should be somewhere that she is commemorated. Presumably, I could sell the cemetery plot without too much difficulty… Maybe it would be easier to consider Latvia as a more appropriate place, since there is pretty well no-one here who knows her. I had assumed, one way or another, that whatever version of burial there might be would have to wait for another visit from you, whenever. Or, if it is to be elsewhere, then from us both. Think about it. Austra (she called) had asked if we were planning a service in Australia, and said she would make sure she would be there. Currently, mum rests on the piano! Think about it and let me know. There is no hurry, and right now, I don’t have money to travel to anywhere.