So another Christmas has now passed, mum has deteriorated so much in the last 6 months. She now can't do much of anything by herself. She needs help to shower, to dress, to eat, to drink, to pick things up, she needs constant reminders to keep doing something because she loses track of what she was doing. She can't use a knife and fork properly and just taps them on the plate not really knowing how to operate them, she needs to just be given a fork or spoon and have the knife taken away to stop her confusion. She can't communicate well verbally anymore and when she speaks you have to guess what she's trying to say. She'll begin a sentence and stop part way through, needing prompts and often her voice is that blubbered that you can't understand the words she's trying to say.
She sleeps, alot. She sleeps about 10-12 hours a night, then has multiple naps during the day time. Usually at least a couple of solid hours in the afternoon plus multiple little naps whenever she is sitting down in a lounge chair.
Recently when I was at her house, she fell asleep twice whilst standing up. Once at the sink, I heard the water running for a long time, so came to investigate, and there she was standing at the sink with the head dropped, asleep. Then I told her to sit down on the couch, walked her to the couch, and then got side tracked. When the kids went in, they said she was standing near the couch, asleep standing up.
She is on methodone for pain relief, but even when that isn't taken, she is constantly sleeping.
The Parkinson's tremors seem to be amping up quite a bit. The balance is worse, stepping up and down from a small step or into a door with a small step is a big issue.
I've been suggesting to Dad all year that she needs to go into respite, but he has been refusing so far, saying that he'll get respite into the house, but won't send her to a nursing home for respite because she gets so upset at the conversation about it and she doesn't want to go. Even up to a month or 6 weeks ago, he wasn't interested in it. But obviously she has gotten alot more agressive towards him and he has finally turned the corner with that and has decided that she needs to go to a nursing home for respite.
She has recently had an ACAT assessment and we are awaiting the results, hoping that she will be now eligible for 12 weeks of respite per year. Dad has told me that he intends on putting her in some time in January whenever he can get her in. He has opted for a couple of nursing homes that aren't as close to home which is great. It indicates that he has listened to me, because she used to work as a nurse and in hospitals and nursing homes in their area, so I have mentioned that it would be a bad idea to put her in locally as there will be many people who would know her and recognise her and therefore humiliate her. If she goes to a place where she doesn't know anyone, there won't be any need for her to be humiliated. Where they live, is a country town, my Dad knows hundreds of people locally and they all recognise her and speak to her when they see her. I don't think she's that far gone that she won't care when they see her in a nursing home at her age (61 years old).
I'm really hopeful that this will work out well with the respite and will give Dad the opportunity to have a rest, let go of the stresses for a couple of weeks and get a bit of his sanity back. I imagine that by the time that another year passes, it will be time for mum to go into a nursing home full time. I look forward to Dad being able to actually enjoy his life again and live a little. It's almost 4 years now since the Alzheimer's diagnosis and to be honest I hope that this next bit goes as fast as possible. The worst bit is when they still know what's going on, and understand how bad they are getting. Once they lose that consciousness, I hope she will be able to just relax a bit and let some of her tension go.
It's impossible to talk to her now. I don't know what to say, it's just so awkward.
I'd say that this year is going to be a tough year, the toughest yet in this journey.
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