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Archive for the ‘Alzheimer’s’ Category

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.

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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.

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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.

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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.

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For a few years, there was the hope that one day, I would be able to take my Mom back to Scotland to see some of the places that have featured so much in her stories of growing up. I have not seen the house she grew up in in Dumfries, Scotland, or the house she and her mother moved to when my grandfather died. She may have taken me there when we went when I was 5 but while I remember a great deal from that trip, I don’t recall that.

Thanks to Street View on Google Maps. I can now stand outside the houses, at least vicariously, with her and be able to reminisce with her about the places before they disappear from her memory.

I can also share them with family, as well.

The first is the house she grew up in. It is the one on the right. It served as the Manse for my grandfather’s church, though the church was down town.

You can even see that the old house name, before the houses were numbered is still there…. Halldykes

The second is the second floor of the right side of the building. When she lived there, across the road was an open hillside with pasture land for sheep grazing, might have been fallow or had a crop in, depending on the year. Now there is a housing estate on it.

And here is my grandfather’s church, formerly Buccleuch Street Church, now Bethany Hall, a Baptist church.

And here is where she was born… The Manse, in Canonbie. I can’t wait to show it to her in the morning…

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Mom nearly scuttled the application process for the new place.

I had a letter from our chiropractor about Mom’s situation and had wrapped a note from myself around it and put “Attn: Membership Committee” on it. I put it on the stairs with some other things to take out today and drop off to someone on the committee. I couldn’t find the doctor’s letter.

I asked Mom but got the usual…. “I haven’t seen it!” and “I haven’t touched it!”

Invariably, she HAS seen it and Has touched it. In fact, usually, she has seen, touched, opened, and gotten tomato sauce all over whatever it is I am looking for.

After a good long search, I found the envelope in her filing cabinet, with the letter from me opened but luckily not the chiropractor’s letter.  AND, thankfully, not covered in tomato sauce, honey, or something I’d rather not know the actual identity of (as in the case of the letter from the financial counsellor with the discharge of the bankruptcy).

I took everything over (forgot the letter from my company telling them that I still work full time there… However, I can have it emailed and send it over via email.

Yay!

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Empty mugs.

How is it that an 85 year old woman who was out all morning (with me) could go through 7 (SEVEN) coffee mugs in one day????? She left about 1/2 cup in each. But, there they were lined up on the coffee table….

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