I don't even know if I'm in the right place. My name is Tim. My mother is 80 and she was diagnosed with dementia/Alzheimer's maybe 5 years ago . (I was told dementia is a form of Alzheimer's, and that Alzheimer's is a form of dementia, and I am still none the bloody wiser!). After that she was placed under the care of the local Memory Clinic where she was prescribed donazepil. She was there for two years before they decided that because she was showing no signs of deterioration she could be discharged. Which to my mind calls into question her entire diagnosis in the first place; just how bad do you have to get? I feel like we were abandoned just because she didn't meet a minimum level of criteria for help.
However, even now she still recognises me and her sister; she can still communicate and hold conversation, though her comprehension and retention of information is bad. She isn't incontinent, she knows how to use a knife and fork, etc. She even does the washing up! But then I suppose this horrible disease affects us all differently; I know a neighbour who has the same condition and is in a far worst state. But sometimes I wonder if this is just ageing, or whether she does actually have this disease. Isn't she a bit old to be be diagnosed with this? I always hear of early-onset dementia, but rarely dementia diagnosed this late in life. Recently however me and her sister have noticed she is talking to herself more; it's not abusive or gibberish, she's having what seems like full conversations with people from her past, recounting memories. She does it in the loo, in bed, even while watching TV. I asked her what she was doing, and she just said, matter of factly, "oh don't mind me I'm just talking to myself".
Is this normal? What the heck does normal mean, anyway, in a illness like this? Just how am I suppose to react? What am I suppose to do? Should I just let her live in her own little world, or snap her out of it? We're from completely different generations and it's hard to find common ground for things to talk about; and if we do find something to talk about she doesn't comprehend all that well, and quickly loses interest. I am neither a psychiatrist or a counsellor; I feel like I'm not equipped to handle this. Each day I feel less and less like a son and more like a glorified baby-sitter. I think I'm coping, but I'm not; the only respite I get is she goes to a day centre twice a week. But I'm starting to wonder if an extra day might help.
Tonight I snapped at her, and I broke down in tears, which is unusual for me as I tend to keep everything bottled up. Physically she can walk and is fairly mobile; it's her memory that is the main issue. One minute she praises me for all I do for her, the next she's muttering under her breath that I'm an "idle ******" who does nothing. Believe me, I do pretty much everything that needs doing, including her dinner as well as my own! Her mood swings are really hard to take sometimes. She won't even admit most of the time that she even has a memory problem, and that drives me nuts. I can see it every damn day; I have to watch her, I have to make sure she takes her tablets; I'm the one who makes and keeps doctor/hospital appointments for her. I am essentially now the man of the house; I have to do everything for her. I have applied twice for Carers Allowance/Attendance Allowance and on both times I was turned down! That's what you get for being honest!
I'm an only child, with few friends or family, so it's left up to me and her 82 yr old sister (who doesn't have any dementia and is surprisingly fit and healthy for her age!) to deal with her the best we can. My dad died two years ago (Mum's husband) after a long illness and even before then I was more or less looking after them both. After he died (I had to arrange the funeral, one of the hardest things I've ever had to do in my life) I organised a widows pension for her, just to help her out financially. And if we need a plumber, I get a plumber; if we need an electrician, I get an electrician; if the heating breaks down in the winter which it did during a cold snap, I get an engineer. There is no way in hell she would be able to do any of these things by herself. I also had to take control of her pension, and bank accounts, because she would have struggled otherwise; she barely knows how much she has in her accounts, let alone how to deal with direct debits, standing orders, etc. If I weren't here for her, I know she would struggle really badly. But at the same time I feel trapped, and utterly bereft.
I'm sorry I'm rambling. My only comfort in those dark and lonely hours is knowing I am not alone in this.
Thankyou,
Tim
xx
