87th Birthday

It’s Mom’s 87th birthday, today!

We had a scare last week when we went out to see our friends in the band play and after a lovely evening despite her having found a band-aid in her pizza (her dinner and wine, including a complimentary wine to make up for the band-aid, was free). Just as we had gotten up to leave, Mom keeled over and passed out. We ended up calling paramedics and after passing out a second time and throwing up, they took her in to the hospital. After an overnight in Observation, they surmised that she simply “passed out” and that it took a while for her blood pressure to return to normal.

Since we are having a little party for her this weekend, we are hoping that she doesn’t have a repeat performance. However, to head that off I will ensure that she gets up and moves around frequently, this time.

We got a message recently from someone who is researching Scottish girls schools which were evacuated from Edinburgh estates around the countryside. Mom’s school, Esdaile, was one of those. He wants to get her story and reminiscences about their time at the castle. They were evacuated first to Ancrum House and then, when the woman who owned Ancrum complained about everything they did (including claiming that they fed newspaper to the horses!), they moved to Ayton Castle (had I a spare £3 million…) where they spent the duration of the war.

Out on the town

I rather wasted the day, today. I had stayed up far, far too late and was awakened by Mom who had come up stairs(!!!) because she thought she had heard me calling her. She had apparently called from downstairs but when I didn’t reply she came up. I get very panicked when she does because she doesn’t do stairs very well on her own any more and the stairs here have a turn at the bottom and the stairs are wider at one end than at the other. I am frightened that she’ll fall. When we first moved and Amber the cat was still with up, I had a baby gate across to keep him from coming up. One morning, again thinking she’d heard me calling, Mom appeared in my room. She had CLIMBED  OVER THE GATE and come up!!!!! I was horrified!

"Duchamp descending a staircase". Eliot Elisofon

 

Mom has, even when I was a teenager, had “heard me calling her” and wakened me to see if anything is wrong. As annoying as it is to be wakened from sleep (and now dangerous for her) I can’t get upset. When her mother was ill, Mom was on her way home from work and stopped into a shop to looks at a ring. While she was standing there, she heard her mother call out quite sharply. When she arrived home, she found that her mother had died while Mom had been in at the shop. Whenever she thinks she hears me call like that, she worries something is wrong or something has happened. Oddly enough, when something has ACTUALLY happened, she gets no such “premonition”. I just wish she would stay downstairs and not risk the stairs when she “hears me calling”.

Anyhow… Because I had been up late and wakened early by Mom (and the phone, several times) I ended up sleeping in. I woke a number of times and would read for a while (The Stone Angel by Margaret Laurence) and then doze off.

"Reading in Bed" Whistler

About 5:30, Mom called up and wondered what I had planned for supper and I thought we might slip off down to Kemptville to see if the hotdog/ice cream stand that we like to go to had opened for the season. Before we left I got a message from one of my friends in the band telling me that two of them were going to be playing in Merrickville, just down the road from Kemptville. I was going to drive Mom home after checking to see if the stand was open and then head back out to Merrickville.

We were in luck, the stand had opened a few days earlier! The couple who run it are always so nice to Mom and look forward to seeing her as much as we look forward to seeing them. We are down there at least once a week during the summer. The drive is nice and the incentive of a hotdog and an ice cream is always welcome, especially since Mom can’t drive herself down there. Since it was getting late, I asked Mom if she was up to an evening listening to the guys play… She was! It’s just a short drive from Kemptville to Merrickville so we’d have arrived early. As it got darker, we could see that the stars were REALLY right tonight so we took a detour down a favourite drive and stopped to have a look at the Milky Way and the various constellations which we don’t often get to see. Unfortunately, I was afraid to get Mom out of the car because we were right on the shoulder and I was afraid of her falling — especially into the ditch with fast-moving and FREEZING water!  It was lovely, though. No chill in the air and we were able to sit for a few minutes with the windows open. There were even a few moths out this early, which surprised me.

We made it to the pub where the guys were playing and Mom was able to make it through two sets before she began to get tired. Rob and Ken played a lot of her favourites (songs  by Fred Eaglesmith, Ton Russell, and John Prine, as well as a number of other musicians). They did Tonight We Ride (Tom Russell) especially for Mom (It’s our driving around theme song and whenever we go to see Tom Russell, he sings it for Mom). Mom had a terrific time, as usual. She loves to see the guys play but hasn’t had much of a chance because, since the Ashton Mill has changed hands they guys don’t play there and there isn’t anyplace which has an early enough show for her to go to. Now that they have a regular gig  as the trio at the Mooney’s Bay Bistro I’ll be taking her there. But it was great that she felt like she could manage a one-off at on of the other places they play, even if Ray, her former student, wasn’t there.

Hospital adventures and more changes

Wednesday morning, I took Mom to the Unitarian church for the monthly Senior’s Lunch. Usually, the chaplain from our Fellowship has taken her and brought her back. This time she had a class just before and I was to take Mom and she would bring her back.

So at 11:30 I took her and dropped her off and then went to my company’s office to drop off some paperwork and then went to pick up some lunch. I sat down in front of my computer and started eating and suddenly an email popped up telling me that Mom had taken one of her “turns” and they wanted to know what I should do. She had called the home number and my cell (which I had forgotten to bring with me) and left messages on both. She had sent the email at 1:30. I got the email at 1:45. I tried calling the church three times before I left the house and three times (during red lights) on the way there.

I arrived at the church and found Mom sitting up, looking fine. Apparently, a doctor had been there and had taken her pulse and said it was “really fast” and that she should be seen at the hospital.

I took her pulse and it was fast as well a irregular but it usually is after one of her “turns”. She hadn’t actually passed out and unless she actually passes out, she has been fine afterwards. If she passes out, I have called an ambulance. I decided to take her home. She said she was feeling fine. She got up but by the time we got across the back of the church, she was feeling dizzy again. I got her to lie down and gave her some water which , again, usually helps her perk up. We tried again and, again, she felt dizzy after only a few steps. Her pulse was still a little fast and still irregular so I called an ambulance. On the way to the hospital her heart rate went up to 160… They put her on a medication to bring the heart rate down and over the next few hours it went down… and then went too low (29, at one point — 60 is normal). The crash cart was on hand, just in case. They were talking of keeping her in. They talked about putting in a pacemaker. Finally they let her go home.

The diagnosis was Sinus Tachycardia which apparently an irregularity brought on by stress — either mental stress (fright or flight) or physical stress (improper diet, failure to take medications, getting up suddenly, age-related, too much coffee…). Sometimes it is short duration and you recover quickly but if it continues, it can kill. The “good” thing in all this is that they were able to take a really good look at what was going on with Mom when she was having one of these things. Previously, they were more or less guessing about what was going on. over the last few years she was on 4 times the amount of blood pressure medication as she should have been. Once they took her off the medication, she stopped having her “turns”. In recent weeks, she had had a couple of dizzy spells.

I don’t think it is a coincidence that in the last couple of weeks, Mom has been forgetting to take her Metformin for her diabetes and forgetting to put on her Nitro patches. Since those have been the medications that she’s always been able to manage on her own, I had been monitoring but not having to take over for her. In the last few weeks, she’s forgotten she even has to take her Metformin and I have to remind her and actually show her the medication. In the case of the Nitro patch, if I remind her, she remembers. I can’t trust her with the other medications. She’ll take them repeatedly or not take them even if I leave them out for her. I have to hand them to her and give her the water to ensure that she takes them. At least with the Nitro and the Metformin, it is easy enough for her to manage them… if I remind her and easy to check to see that the patch is on (and off at night) and if there is or is not a 1/2 tablet in the bottle.

Food is another problem… Left to her own devises, she will eat bananas all day long and eat all the yogourt in one sitting. She’ll eat cheese and crackers instead of the raw veggies I have put out for her. I can’t buy large tubs of yogourt because she’ll eat half the tub and leave the rest out on the coffee table, under the coffee table or under the couch. If I tell her it needs to go in the fridge, she says it doesn’t have to be refrigerated… apparently the “Keep refrigerated” on the container is “optional”. That’s IF I don’t find the container two weeks later… I can’t buy individual containers of yogourt because she’ll eat all 20 over two days… instead of the carrots and humus that is right beside it.

I bought some frozen toffee puddings to have for the odd treat. Yesterday, I found she’d eaten one for breakfast and later in the day I found she’d eaten another one for lunch. She didn’t remember having eaten them and refused to believe that she had. I got angry.

Then I realized that getting angry wasn’t the answer and that coming up with a sensible solution was the better way to deal with problems.

SO… this afternoon I ran out to Sears and bought a full-size upright freezer and a full-size fridge (without a freezer) for the basement. That way I can bright food into the house and put it in the basement fridge and freezer, bringing up just enough for the day and only the stuff that is good for her. Since the fridge in the kitchen is a side-by-side and the freezer is too small to actually fit what we need, this was an easy solution and one that Mom would accept. I could have gotten a fridge-freezer more cheaply ($1000 as opposed to $1700 with the extended warranty) but I still have the problem of not enough freezer space. Given the money I will save in wasted food and taking Mom to and from the hospital because she hasn’t eaten properly. They arrive next Thursday.

The next thing I did was set her up with Meals on Wheels for Mom. She’ll get hot lunches three days a week and she’ll have nutritious frozen lunches and breakfasts for Tuesdays and Fridays when we go to Chiropractic. She can cook them herself when I am working. They are low-sodium, low-fat, and appropriate for diabetics. The hot lunches arrive fresh at the door which means that she’ll have someone come to the door and that, in itself, will provide some stimulation for her. The range of frozen meals is amazing! They have chicken, fish, beef, pork, and vegetarian options. They have a section of Chinese-inspired meals, a butter chicken option, a huge variety of soups (Mulligatawny!!!) and desserts. AND… They work out at less than $5 per meal!

I can get the frozen meals delivered daily and also go and pick up them in bulk at a central location. That way, I can ensure that she’s getting a healthy, balanced diet that is appropriate for her, that she will like and that she can feel she has some control over.

Not only is a healthy diet good for her physically, it is good for her Alzheimer’s. The better she feels, the longer we’ll have her with us and THAT is my priority.

People just don’t understand…

After getting news that my job was ending as of December 31 (I have since been renewed as an employee with benefits for 3 months), I started looking for information on funding to be able to to care for my mother at home.

As it turns out, the Ontario government will assist you in paying someone to come into your home or to live in to help look after a family member but won’t pay you to do it.*

For those caring for someone with Alzheimer’s, having someone else come into your home is problematic enough. Neither I nor my mother want someone we don’t know coming into the house. We don’t NEED someone else coming into the home. Why should we have to pay someone to do what I can do myself for the foreseeable future? I know one day I won’t be able to give her the care she needs but at the moment I can. By the time I can’t it is likely she will have to go into care.

Why is it, though, when I tell people that I am frustrated because there is no provision for allowing me to stay home to care for my mother long-term they inevitably tell me about programs where I can get someone in to care for my mother! I DON”T WANT SOMEONE COMING IN TO CARE FOR MY MOTHER! MY MOTHER DOESN’T WANT OR NEED SOMEONE COMING IN TO CARE FOR HER!

I don’t NEED someone to provide respite care…. If I do I know where and how to get it.

I don’t NEED a full-time care-giver… I KNOW there is funding and resources to get someone in to care full-time or part time! THIS IS NOT THE ISSUE!

What I WANT is to be free to take care of my mother myself and spend as much time with her as I can. HOW HARD IS THIS TO UNDERSTAND?

Stop telling me that “One day I will need to fall back on this”! Don’t tell me “You need to find full-time care”! Stop telling me “Maybe you need to put her in care”! None of this helps, nor is it welcome!

My mother is fine but she cannot make herself meals and she can’t take herself for a drive and she can’t remember where things are but that doesn’t mean I want or need someone else to “help out”!

My “problem” is that, quite apart from the fact that if I were working outside the home I would be getting calls from her 50 times a day about mundane things that I have answered her about 49 times previously that day,  I want to spend all the time I can helping Mom and spending time with her while I can.  This is not solved by the government paying a stranger to come into the home to look after her! It is not solved by Meals on Wheels! It is not solved by respite care! It is not solved with a paltry tax rebate for me to take time off temporarily which we wouldn’t get anyway because our income is higher than $12,000 a year and because the family member has to either be terminally ill or temporarily unable to care for themselves! It is not solved by people telling me I need to put her in a home! It is not solved with telling me that “other family members need to step up”! (The ones that can’t CAN’T, PERIOD! And the others I wouldn’t trust caring for Mom, PERIOD!). I am WILLING and ABLE to do it.

As it happens, my employment will continue for the next three months and may be renewed on a quarterly basis until 2013 (no guarantees). That means that I can still work and stay home with Mom for the next while. At least I have that luxury for the next while. I may end up choosing not to accept further offers in the near future simply because I cannot juggle both. The fact is that caring for my Mom would be a full-time job — a job I WANT to do — and I should be able to get compensated at least partially for doing the same work that the government is willing to pay out for a stranger to come into your house.

I am not “tired”. I am not “worn out”. I am not “at my wits ends”. I just want to have the time to care for my mother and love her while I can… How hard is this to understand?????

—–

* The province of Quebec DOES have a full-time family care-giver program, apparently but that’s of no use to us.

In the New Year

I learned at the beginning of October that my company was letting a number of us, those working on a particular project for a particular government department, go, as of December 31st.

This wasn’t the best news in the Universe. I knew the department’s mandate ends in March 20 and I was hoping that my job would continue on to that point. As I am a contract employee (an employee of my company contracted out to the government department) I knew that, in reality, I could be let go at any point. However, it isn’t the department ending my contract, it is my company which is downsizing. I love the work I am doing but am getting tired of the bureaucratic “stuff” that accompanies it… “stuff” which changes practically monthly and which requires continual retooling of my record-keeping. As well, the amount of work I can do changes and while I have to work an 8-hour day for my company, I can only charge 7.5 hours for the department — unless they reduce the “call-up” for me which means that I have to work 20 days but only charge for 18. That means that I have to use holidays, sick days… unpaid leave…. in order to cover the rest of the days. This is frustrating and makes me anxious. If I could just do my job and not have to worry about idiotic limits… I’d be perfectly happy.

However, as of January 1st, I will be sans employment and that is that.

If this had been a year-and-a-half ago, I would be beside myself with anxiety. Instead I am simply taking it one day at a time. I have decided to spend the next while caring for my Mom full-time.

In order to do this, I was under the impression that there was a government program which would assist families for providing home-care themselves. As I discovered, such a program exists in Quebec but not in Ontario.

Ontario will provide SOME funding and/or tax breaks to HIRE someone to come in and provide care but that is only for people under a certain income. In other words, I have to hire someone to come in and look after Mom instead of being able to take time off work and take care of her myself. I have to pay someone neither of us know to come into our home and provide care that I can easily give. Because of Mom’s Alzheimer’s not only do I not want to put Mom through having someone she doesn’t know looking after her but I want to spend as much time as I can with her which she is still able to remain at home.

She doesn’t need specialized care. She just needs to have someone she knows around her to make sure she eats properly, that she takes her medication, and that she is kept busy and active. I can do that and take care of the house in a way that I can’t while working.

However, while things may be tight for the next while, I am taking the time off and doing what needs to be done.

I will also be lobbying the Ontario government to make it easier for families to personally take time off to look after family members without resorting to hiring care-givers.

Amber

Amber is no more.

He went at home, two weeks ago.

Olde Photos

A few weeks ago, my sister loaned me the family photo albums and I have been hard(ish) at it scanning and uploading them to my Fotki albums.

It has been years since I looked at most of these photos and there are some I don’t ever (consciously) recall seeing before. I have to sit down with Mom and go through the albums and sort out some of the faces I don’t recall or don’t know. Sadly, there are only a few of my step-Dad’s family photos and none of them include anyone beyond his parents and sisters. I do remember a photo of his grandfather (which grandfather I cannot recall) but so far I haven’t located it.

Many of these photos were just loose in boxes in the past. Some had been in the old sticky albums which damage the photos. Luckily, there doesn’t seem to be any really bad damage, beyond some yellowing. I seem to have a lot of the negatives for the photos, myself. I am debating as to whether to put the photos and the negatives together or keep them separate in case something happens to one or the other. However, if they are scanned and uploaded, we will have one set of copies safe.

Great grandmother Margaret (Balfour) Tocher

Maggie, Mamie, Jennie (seated on floor), Nancy (baby) and John Tocher

Grandfather McIntosh and Mom

Aunt Amy, Aunt Mehru, and Dad, 1926

Knowing you have to say good-bye…

Amber

This week I made a difficult decision.

For some time now… really the last couple of years, Amber, my Mom’s cat, has been less than fastidious with his toilet habits. Before we moved, I was just about at my wit’s end about having to constantly clean up after him, about his using the carpet for a toilet more often than not.

Finally, I tried a lower box and a litter designed for older and long-haired cats and it seemed to work. He often peed outside the box but as long as we put down absorbent pads, he kept it more or less to the vicinity of the box. There were a few accidents on the new hardwood floor and once we moved, he seemed to be staying on the special mats in the bathroom. Until the last two weeks….

He started peeing in various spots in the living room and dining room and in Mom’s bedroom and then pooping, as well.

I finally put my foot down.

As much as I love Amber, I simply cannot add cleaning up after him to my already long list of daily chores. I told Mom that it is time. He is somewhere between 16 and 19 and suffers from arthritis, has a bad heart, and the peeing is probably a sign that his kidneys are failing. During our last visit to the vet with him, I spoke about his drinking and peeing all the time and she had felt that this was the likely problem. This week I went in to talk with her and I said that I would be bringing him in in the next few weeks.

Amber on the farm

Mom says she understands but I know how painful this is for her. He is a lovely old fellow and a loving companion for her. The two spend all day on the couch together and he sleeps in her room at night.

I just can’t continue. Quite apart from the added frustration and work, there is the smell. Some nights I have to spray perfume around my room and burn incense so I can sleep. I can’t bring anyone over to the house and have to warn any servicemen who come. Mom, of course, doesn’t smell it because like many older folks, her sense of smell is diminished. Sometimes I think she doesn’t believe me. And she always says “What about that stuff you can spray to discourage them from peeing…” Firstly, I would have to spray it all over the main floor and secondly, I am one of those humans who can smell it and it makes me puke… literally….

I have done what I can and, as the vet said, judging from his last visit, this cannot be comfortable for him. He is likely experiencing discomfort.

I just feel horrible about having to make the decision and about telling Mom that he has to go.

There really is no other option. No one would take him because of the toilet habits and sending him to a farm is just cruel. He is in his dotage and all he wants is someplace warm to sleep away the days. This is really the only option, much as it breaks Mom’s heart (and mine, truth be told…).

I took him in for his grooming to make him more comfortable for the next two weeks.

Inscrutable

Temper

Tonight I lost a favourite cereal bowl. It was hand-made and one-of-a kind. I got it at the Great Bowls of Fire benefit for the Ottawa food bank.

Recently, Mom has taken to getting angry at me if I suggest that she’s forgotten something. Usually it is because she has done something dangerous… like taken her pills when I have already given them too her. She will swear up and down that she didn’t but when I try and logically explain how I know she took the pill(s) she gets angry… often to the point of throwing things at me. Usually it is the phone receiver or the TV remote.

Sometimes, like tonight, it is because, for the umpteenth time, she has put water in her cat’s dry food dish. For some reason she has gotten it into her head that he won’t eat it if it isn’t soaked in water . In fact, he won’t eat it if it is wet. The problem is that whenever she goes near the dish, he follows her about because he things she is going to give him something else… like caviar or roast suckling pig.

I see him chowing down on the dry food all the time. In fact, when we were in the old place, he would come into my room and eat Benjamin’s food which is not soaked.

All that happens is that he won’t eat the dry food and then it goes moldy. I have tried to explain that if he eats moldy food, it could make him sick or worse but she still insists that he won’t eat it unless it is wet.

Tonight, she simply denied that she put water in the disk. Since I changed both dishes yesterday, throwing out mold food, I didn’t put water in the dish (both dishes, actually, if you count the second dish in the kitchen which she put down this morning), and the cats can’t reach the taps… It had to be her.

Not only is it dangerous for Amber but it is wasteful and the food isn’t cheap. Since I end up throwing out about 1/3 of what gets put down for Amber, probably about 1/5th of the food is wasted.

Tonight she got mad and yelled at me and a moment later, my bowl was across the room in a bunch of pieces. She said she “dropped” it but since it landed half way across the room… I know she threw it.

I know it is my fault for bothering to try and get her to remember to do or not do something or bother trying to tell her she took an extra dose of her meds.

I need to stop and let go. Just pick up the dish and throw the spoiled food out… Hide the pills in a new place and not worry because she took one dose extra… I worry that she’s going to hit me with something and may well have thrown the bowl at me if I had been in the room. It just isn’t worth the risk of her hurting me or herself.

Normally, she is placid and easy-going. It is just once in a while and always when I have pushed her trying to be logical or to “make” her remember.

PhotoHunter: Mother

I thought it apropos to post my PhotoHunter selection this week on the blog that I started about living around my mother’s Alzheimer’s.

My mother