Hello

[Mark.S]

I am new here, my Dad has Alzheimer's, he was diagnosed about three years ago, the condition has got much worse over the last year.

My Dad still lives at home with my Mum, but they are both well into their 70's so the care & help he needs everyday doing virtually anything has become a massive strain on her. I live near by and help out as much as I can, having my Dad at my house, or going around there at weekends to give my Mum a break and allow here to have something of a "life".

In the last 6 weeks or so Dad has been given a place at a couple of Day centres, which was initially welcomed by everyone, but now he has become reluctant to go. Whilst no one wants to enforce anything on Dad, even a few hours respite for my mum is a huge relief for her, has anyone encountered similar situations? or can they offer any advice?

 

[Brucie]

Hi Mark
no real advice I'm afraid.

Any change in routine becomes a real challenge for someone with a dementia. Matter of fact I'm a creature of routine myself. The difference is, I suppose, that I am in control, and if I don't want to do something, I can say 'no', and not do it.

The person with dementia is already confused, and control is one thing they do not have. They feel intensely vulnerable. The loss of faculty means that, once they are at a day centre they wonder why on earth they are there. They see others - maybe older, but perhaps more advanced - and feel they are suddenly in the wrong group.

For the couple of times my wife went to the day centre, I used to go with her then wait until she was distracted, then run like hell. The problem was solved for me in one way because the day centre threw her out as being too disruptive [she was 20 years younger than the others]. The problem was still there because I was the only one who then could look after her.

There may be a difference between 'reluctance' and 'refusal'. If your dad is only reluctant, then words of encouragement may work and you may be able to use the loss of short term memory to your and his benefit.

Refusal is much more difficult.

 

[Mark.S]

Thanks Bruce.

refusal to be fair is more apt, today when he got there, he refused to leave the taxi, then tried to run off, the once he went in he was apparently banging on the doors wanting to leave.

He was sent home, but my Mum was both angry and upset at this turn of events as understandably she values the chance to do something for her self during the few hours he was there.

 

[adele78]

Hi Mark,

I read with interest your story about your dad refusing to go into respite care. We went through the same with my mum. In my experience it just gets worse. She even climbed out of a window and escaped one day, we had the police helicopters out looking for her.

She went from daily respite to weekend respite and then 1 or 2 weeks at a time as the illness progressed. Eventually she went into a home in the EMI Unit. She was there for about 2 years and in all that time constantly tried to escape.

She then stopped talking and walking about the same time and we knew then that she needed nursing care. That is when she went into a nursing home. She is now in her 5th year altogether of being in residential care. She is 79 now and has had a peg feed for the past 3 years, is incontinent and I wonder if her eyesight is failing.

Adele

 

[Norman]

Mark
for 7 years now I have coped alone looking after my wife,she is on Aricept and the condition AD is slowly worsening.
We have no-one who chooses to relieve me for a while but to be fair I suppose I would not "let go"and carried on trying to cope.
Now on advice from our two sons, and all we do get is advice,I am receiving help from Crossroads.
I went to play bowls under no stress,well a bit, for the first time last week and again this week,leaving my wife in the care of the Crossroads carer.
I did receive a frosty reception from my wife on returning but as I have said before all is forgotten in 5-10 minutes.
Mark the answer may be respite at home,less disruption and still in familiar surroundings.
This seems to be the answer for me
all the best
Norman

 

[janemary]

Hi Mark - I suffered the same with my husband refusing to go to Day Centres. Do they offer transport? Sometimes this is an answer as the staff on the vehicle are used to dealing with these situations. This doesn't always work but it might be worth a try. Also I agree that Crossroads care at home is brilliant. I tried not to take it personally when my husband was upset when I went out, but it is hard. Also our local Age Concern ran a Time Out scheme when a trained worker came to the house to give the carer a break. Ours was wonderful. Has your mother contacted the Community Psychiatric Nurse (through her GP)? She put us in touch with the services of Age Concern and Crossroads.Eventually none of this worked and Phil went into a nursing home when he became aggressive.

 

[Brucie]

Depends on how you look at these things really.

Fortunately, this stage passes.

Unfortunately, it is because the condition worsens.

One of the hardest things to accept is that things WILL get worse, and it is only when one can truly accept this, that one can really plan a future for the best interests of the person with the dementia, and for oneself.

I can accept that there is an inevitable path to this process, but I have not accepted the fact of the condition. It's too unfair on the patient. I'll always be angry about it; I'll always be immensely sad about it; some songs will always bring a tear to my eye; some memory will always come back to haunt me.

But the stage where confusion reigns most strongly, and where the patient fights the best intentioned attempts to help - this stage will pass.

Even now, I still use subterfuges because they seem to help Jan accept what I am doing. For instance....

When I see she needs a drink during my visit [I always have one prepared for her, a favourite mixture of Fanta Orange and Cranberry juice - the cranberry because it is beneficial for her bladder] I say to her that I'm just going to the bar to
get a cocktail for her. Somewhere within her there is a tenuous link that recalls the times we sipped cocktails watching the sun set on the Med, or the Caribbean, and she smiles - sometimes she says "Gosh!" or "Wow!" Who needs the Lottery then!

When I leave her each day, I don't say "Goodbye", I say "I'm just off to the shops, love - do you want anything - see you soon", and she smiles and sometimes can say "OK".

For anyone who has the horrible experience of the patient being unkind to them...... it doesn't mean anything, but they have to have some safety valve, and that may be all they have left.

My best wishes.