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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.

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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?????

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* 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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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

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The moving process is, well…. maybe not HUMMING along, but “getting there”.

We’ve managed to whittle down a lot of the stuff in the basement that has been hoarded over the years, much of it Mom’s. I finally managed to talk her into donating a lot of her old floral arranging stuff and was able to throw a lot more out. Unfortunately (or fortunately, depending on the point of view) we have had mice off and on over the years here and while I have managed to get rid of them,again (I think) they have had a field day in the boxes of floral stuff that consist of natural materials.

This has also meant disposing of some books which have been pooped on and peed on.

As well, Mom accidentally locked Benjamin (my cat) in the back room of the basement and while it took me three days to find him…. I discovered today where he had been peeing all that time. Luckily on mostly readily disposed of stuff. All of it, disposable or not, went out.

Treasures have been found, however. Mom’s school and Territorial Army photos… some of my bronzes that I thought had gone missing, the photo of Benjamin sitting watching the Dalai Lama on TV.

Mom has tried to help but there really isn’t much that she can do. She was able to do a lot of wrapping of dishes and glassware on the first day but beyond that, she just can’t do much and she’s been pretty unhappy about that. And, because of the upset and muddle and confusion, she has been repeating questions and concerns. I know things will settle once we are in the new place.

However, I discovered that instead of hardwood floors in the new place, we have carpeting in her room and the living/dining room and now I have concerns about Amber (her cat) peeing wherever he likes. This is a stress I REALLY do not need.

They also haven’t done the kitchen and bathroom floor tiling, yet which means another upset in a few weeks or a month (hopefully sooner, rather than later).

Unfortunately, I just discovered that Amber, probably because of the noise and confusion downstairs, peed on Mom’s bedroom carpet… JUST what I needed.

My brother is supposed to come tomorrow and help move the washer and dryer and dishwasher (though WHERE the dishwasher is going to go…. I don’t know. I am thinking of getting rid of the dishwasher and getting a counter-top one). I am hoping he either brings someone with him or is able to come AFTER my niece’s boyfriend gets off work because there is no way I can help move anything heavy.

Sigh…. 5 more days and HOPEFULLY we can have the move done and the cleaning, patching and repairing done. I want to be able to sleep a night through without waking up or not being able to sleep for worrying about this and that…

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We finally got to go into the new house and have a look around.

There is new carpeting on the stairs and both upstairs and downstairs bedrooms. New wood flooring in the living room, new tile in both bathrooms, kitchen and hall. Both bathrooms are very big and the downstairs one can accommodate a wheelchair. The kitchen has a new side-by-side fridge with an ice-maker, as well as a new self-cleaning oven (AND a large ring on the front right. I was complaining the manufacturers seem to always put a small ring on the front right.

The buttons and knobs for the stove are on the front rather than on the back which means that Mom will be able to reach them while she is using her cane.

The bedroom on the main floor is about as big as the master bedroom, here and the two upstairs bedrooms are very much larger than my current room. As well, the basement is half finished. All it needs is a carpet. But we will only really be using that as storage.

There is room in each bathroom for the cat boxes which means we won’t have them sitting in the hallway. We can also, I think add a folding door to the small foyer which will keep Benjamin from dashing out the door when we open it.

As soon as they have cleaned it (it is dusty from being empty for 5 months and from the workmen putting in the carpets and flooring) we can start moving in!!!!!

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