Moving right along, like a freight train

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.

It’s been quite a while

It’s been quite a while since I’ve posted.

I guess it’s just the time between crises.

Last week was another mini crisis. My Dad injured himself working, and had to have surgery, so I had to babysit mum for a couple of days at my house. It’s impossible because she is really deteriorating and now Dad does “EVERYTHING” for her.  When she’s not at home, she is really anxious and confused. I have to work, I work casually, in a new job, I don’t have the luxury of annual leave, sick days, family leave, any of that. I’m trying to get a permanency, so I have to accept every shift I possibly can and be reliable. I can’t let my family problems affect my work life at this point. I get home from work, Mum’s crying because she doesn’t want to be alone. The next day, crying because she doesn’t want to go into a nursing home. At 3am, I have kids coming into my room crying because they are scared of the noises she makes in her sleep. It’s anything but ideal.

The euthanasia debate sparks hot with me and my partner. No matter how hard I try, I just can’t seem to get him to see it my way. He understands that I am pro euthanasia, and thinks it’s a reasonable concept. But doesn’t seem to grasp that if you have dementia, you are out of the euthanasia game because of the mental capacity issue, so the only way to go would be to euthanaise yourself (or commit suicide). He can’t handle the concept of suicide. But can’t grasp that when you lose mental capacity, you tend to get medications forced upon you by your family or your nursing home.  You don’t get a choice, and it’s hard to be firm when you are confused and scared and lost and mentally incapable of thinking complex thoughts and following them through.

I have been saying for years and years, well before mum was ever diagnosed with alzheimer’s that if I ever get it, I hope I have the courage to euthanaise myself. He finds it horrendous, and thinks that me committing suicide would be worse than dragging my family through alzheimer’s again. I am so adamant that I will not live through alzheimers, and he is so adamant that I couldn’t possibly do that to my children. Even though I strongly feel that I’d be doing myself and my family the biggest favour by not dragging them all down with alzheimers again. I’ve been through it with my grandfather (when I was at school), with my mum and my grandmother inlaw. I know that it’s not what I want. I don’t want to be subdued with medications to make myself easier to handle. I don’t want to attempt suicide and then be put on the strongest anti-depressents and put into mental institutions. I just want to take the most humane exit and let my family get on with their life.  And then when I get this brick wall the moment I try to talk about it, I think, I can’t even have a rational conversation about my wishes, so I can’t even discuss it, if and when the time ever comes, because he’d just block me, stick me in a mental hospital at risk of suicide.

So, I’d just have to run off and do it without telling anyone and leave a letter, rather than risk being forced to not carry out my wishes.

My position is strong on this subject, it has been for decades. I’ve spoken about it long and hard with my mum, all through my life, up until now, I’ve  never wavered. And If my mother had the courage to “euthanaise” herself, as much as it would hurt, I’d understand that it’s not worse than 15 or 20 years of suffering through alzheimers. So, I’m on my own, and I know it if I ever have to face it. I know I can’t just fly to Switzerland and get it done professionally for a fee if Alzheimers is a factor. I know I can’t discuss it with medical professionals because it’s a no go zone. I know I can’t discuss it with my partner because of his catholic base beliefs. My children, well I guess I can talk about it over the years as a general conversation, and see how that goes, but in the end, it would be a detailed letter left hoping that eventually the scars would be less from my self inflicted “euthanaisia” than they would from 20 years of alzheimers care and torture. Surely the scars I have are going to be as deep if not deeper than the scars of a very logical, well thought out suicide.

Of course this is only if I get alzheimers, but it’s something I have to think about, because I’ve seen mum go through it, and miss the opportunity, I’ve seen her forced into treatment and medication and accepting that it’s not so bad, and it’ll all be ok. It’s not ok, not ok in any way whatsoever. Her life is miserable, plain and simple. Why would I ever subject myself and my children to what I’ve now had to endure twice. It’s hell. Death, as I’ve said a million times, and will likely say a million more, is the silver lining.

People find it so impossible to discuss the concept of euthanasia and suicide, but then they don’t have the tolerance to deal with the icky business of keeping people alive when there is no point in life. Honestly, my partner hasn’t been to the nursing home to visit his nanna (20 odd years with alzheimers and now 98 years old) he hasn’t been to visit in probably 3 years. But then he has the audacity to tell me that I can’t take matters into my own hands if this fate ever befalls me. I’m sorry, I don’t find that acceptable.  I don’t think that anyone should try and force life upon anyone who doesn’t want to live.

I know it probably sounds morbid, maybe anyone reading this thinks I’m already depressed or suicidal. I’m not, I’d just rather be treated like any good dog and put down once I reach my used by date, once my life has no quality or hope.  Life is not that precious that we should torture ourselves to placate our loved one’s fears and insecurities. Everyone lives, everyone dies, it’s just life.