All too much

[okmurrays]

Hello

I haven't visited the forum for a while.
My Dad has Alzheimers, and has been ill now for I'd estimate about five years, although possibly longer, but undiagnosed. He's 73 now, and I think, from reading about the condition, in the latter stages. He is incontinent, doesn't recognise my Mum or family members and friends, rarely says anything which is comprehensible, and shows little interest in anything except occasionally on his better days, he will look at a toddler book.

I live in Canada, and feel guilty and absent from it all. My family and I returned to England in February for my nephew's wedding and the change since then seems to be marked. In February he was still continent, recognised everyone, well nearly everyone, and although his behaviour wasn't 'normal', he could just about hold a conversation with my daughter. He was confused and wandered, walking for miles.

Since then though, every time I phone my Mum, he seems to have gone down a little bit more. She had to agree to him going into a care home in July as he was becoming aggressive, incontinent, and behaving inappropriately (swearing, going to the bathroom in the bedroom, wandering off for miles - now he has to be taken to the bathroom in a wheelchair as he can't walk(!)

I dread phoning home as I know Mum will have another horror story to tell me. She's been an absolute brick the entire time, caring for him as long as she could. She's in her seventies as well and it took its toll on her, but she soldiered on for months.

It seems so cruel. Mum, my sister and family back in England are left to watch over a shell of a person who has no recollection of them, and sleeps most of the time they are with him. Mum battled to get him the best care home she could find and she has nothing but praise for them, but I know she is struggling with it all. It's heartbreaking to listen to. I tentatively suggested she might come and stay with us in the Spring for a breather as Dad is settled now and my sister and aunts and uncles will step in to keep an eye while she's away, but she won't hear of it. She feels it's her job to be there all the time. She even feels guilty going to family events without him. They have been together a long time.

Phew! I've rambled on, but I needed to get that off my chest.

I'm not sure what I am asking from the forum, except perhaps an ear, and a view on a couple of things.
The manager of the care home told Mum that if patients get Alzheimer's at a relatively young age, then it tends to progress quite quickly? Is this the case? Dad seems to have deteriorated beyond recognition in a few months.
Will decline continue to be that fast? He's now barely mobile. It sounds harsh, but I am worried on the impact on my Mum, and although I love my Dad dearly, and I will be devastated when we do lose him, in some ways this seems worse than him not being here at all.
We lost my father in law to Parkinson's in August, and my husband says he thinks it's harder on us with my Dad than it was to lose his, relatively quickly.

I hope I don't sound hard, but the person in the care home isn't Dad, it's his body, but he's not there any more. Every minor cough and cold seems to knock him back another stage. We all hold our breath when he has a snuffle.I sometimes lay in bed at night wondering what it's like for him. It's hard enough for us, but does he know what's happening, and how frightening must that be? I wander around the house trying to put thoughts like that out of my mind. It's such an awful condition.

We will all do all we can for him, but it's heartbreaking to watch - even from a distance of 9000 miles away in Canada.

Thanks for reading.

 

[jenniferpa]

Hi again, and sorry that you're checking in with not so good news.

I'm not sure I agree with the care home manager if he/she means that people who get AD at a relatively early age die sooner, because from what I've seen on the forum, the opposite is true - without some of the health issues of older people their bodies go on longer than you would expect. However, if she means the mental deterioration then often early onset does appear to be more aggressive. However, everyone is different. Your father could plateau for many years with only a gradual decline. There is really no way to know.

 

[Vonny]

It's hard one to deal with isn't it? You obviously don't want a parent to die but neither do you want them to suffer and you certainly don't want the "well" parent going downhill.

My sister and I were the same with my dad who cared for our mum and it was only at our insistence that he got help in. We told him we couldn't bear to lose him, and he finally realised that he was actually killing himself caring.

I doubt if you can stop your mum feeling guilty and eaten-up, and I doubt you'll be able to persuade her to leave your dad for any length of time. It's a shocking disease for both sufferer and carers and I hope your mum can get out and about a bit to avoid her becoming a recluse, and if she has a computer maybe she could log on here? There are others in a similar situation so she may find some support and comfort in that. Just a thought.

Take care

Vonny xx

 

[Christin]

Your post really has brought a lump to my throat. My mum only lived 200 miles from me and I could get there in less than a day. You must feel so far away from everyone. All I can think of is that your mum may well come and stay with you another time. Now she needs to be at home but one day I hope she will agree to visit you. Try to remember that your dad is well cared for and your mum is supported by family. Just listening to her may help her My FIL lives with us and each has its share of ups and downs. Sending you a hug xx

 

[Canadian Joanne]

I have been told that earlier onset usually means faster progression. However, I don't know if that means earlier. My mother was diagnosed when she had just turned 64 and she will be 73 tomorrow. She looks like she's got a lot of years left in her, even though she's confined to a wheelchair, doesn't really speak, can't feed herself and is doubly incontinent. I sometimes think she'll outlive me.

I assume that generally earliest onset means faster decline and earlier death but that's just general and certainly cannot be applied to everyone.

 

[okmurrays]

Thanks. I think she probably means the mental element. However, physically we've seen a change in Dad in the last six months or so too. He has been diagnosed with arthritis in his legs which is why he's gone from wandering for hours to being in a wheelchair. It's almost unbelievable how quickly he's declined.

I keep reassuring my Mum that she can do no more, and how proud we are of her, and how she's coped. When he was diagnosed we all agreed to give Dad the best 'now' we could as he had no memory from one minute to the next. She did that, and she cared for him to the extent that, when he went into the care home and he was examined by his new GP (who happens to be the chap who cared for me when I was pregnant, and is fantastic, thankfully), he said he had the physical constitution of an ox. She also demonstrated far more patience than I will ever have, when times were tough she always said 'it's not your Dad'...she always put it down to the condition.

I know all we can do is deal with things on a day by day basis. I act as my Mum's sounding board, and phone her every other day to listen to how he's doing and how she's coping. I could really do with having friends around me, but I left them behind two years ago when we moved to Canada, and my husband lost his father in August, so I don't feel I should burden him unduly.

So, apologies if occasionally I have a ramble on here, to get it off my chest! It's helpful to see that we're not the only family battling and inspirational to read so many stories of 'ordinary' people like us managing to cope.

Thanks.

 

[ChristineR62]

I hope I don't sound hard, but the person in the care home isn't Dad, it's his body, but he's not there any more.

Hello

This is exactly what I said to my mum when her father was in a nursing home with Alzheimer's, back in the 90s. Neither of us could relate to him, and to be honest, he didn't even look like my grandad any more: he'd lost so much weight, he looked gaunt and, for want of a better way of describing it, shrunken.

So I understand exactly what you mean and what you're going through. It's difficult enough when you're living with the situation, or in close proximity to it, but from such a distance, it's not surprising that your imagination goes into overdrive.

I'm not sure if I could give you any meaningful advice, but I know from personal experience that getting things off your chest does make a great deal of difference.

 

[okmurrays]

Thanks for all the replies! Much appreciated.

I had another thing on my mind.

My daughter's 14 now and was always close to Mum and Dad. My Dad she named 'Poppa' herself when she was tiny, and she adores him. He's always been great with children, and apparently a few weeks back, astounded the carers at the home when a little girl came in and he started showing her a book. It was the first time in ages he'd shown even a flicker.

What I am worried about is how my daughter will cope with his illness as it progresses. It wasn't too bad in February when we went home. My daughter, Jenny, was excellent with my Dad and chatted away to him as best she could. I know it upset her to see the change then, but when we go back again, possibly next summer, I'm worried how she will deal with such a radical difference. I am honest with her and tell her the latest in as gentle a way as I can, but I don't want her to think all's well and then be faced with the reality. I'm also concerned how she will deal with losing him when the time comes.

I've positioned things as being a gradual decline, and she knows it's a one way journey. However, being told and facing it face to face is a different matter. I am not sure if it would be a good thing for her not to see him again (he will not be aware she's there), so her memory will be of him at my nephew's wedding where he was in relatively good spirits?

 

[Lynne]

Hi okmurrays,
I'm no expert of child psychology - far from it - but my thought is that at 14 your daughter may be (may expect to be) considered old enough to at least be involved in this decision.
Some 14 year olds are young women, some are still little girls.

apparently a few weeks back, astounded the carers at the home when a little girl came in and he started showing her a book. It was the first time in ages he'd shown even a flicker.

"The only thing predictable about dementia is its unpredictability"

Doubtless you'll get further thoughts from people more maternal & experienced with children than me.

 

[shelagh]

Teenagers can be more resiliant and empathic than we give them credit for. My older grandchildren aged 22 down to 13 are quite open about my dementia, talk to me about it, tell me how much they love me and ask how they can best help and support me in the future.They talk about coming to see me if I am in residential care and how I will be a grumpy old woman and they will make me laugh. They do so much more easily than their parents do, talk about I mean. Based only on my own experience I would say tell them as much as they want to know and how much their love will help all though it may not be expressed.
With love
Shelagh

 

[okmurrays]

Thanks, Jenny is a mature 14 year old and we do tell her what's happening with her Poppa. I think my main concern is that because we are so far away it will be a dreadful shock for her to see him having declined from being, yes, not himself in February to whatever condition he will be in next summer. Certainly he won't recognise her, be able to communicate with her, and he will be wheelchair bound.

We will talk about it ahead of the trip, but I wanted to get people's views, because a huge part of me thinks it best she remembers him as he was, particularly as they have always been so close.

Thank you again though.