Tell or not to Tell

Chris

Registered User
May 20, 2003
243
0
Hello Norman

I know I remain a bit naive despite all the experiences but feel I have to - as when you look at the statistics it is depressing. It will never be possible for any agencies to provide enough services to give all people with dementia and carers a little quality of life let alone a good qualty of life.

Look at any county , at the population figure and work out the number of people with dementia, then think about the number of support workers at Crossroads and the like ????????

The only way forward is to expand these services of course but also to help people & their families & wider families help themsleves more and also assist other community groups - non specialised ones to welcome people who may need some support. The time for lateral thinking in care and social services has come I think.

The 'greying population' or aging population and the accompanying increase in numbers of people with dementia is forcing the issue. Already there is talk of going away from traditional day care centres - as providing enough is becoming too costly. A cheaper alternative is providing services 'in the community' - but we are being sold this idea because 'we' have said we prefer services in our own homes rather than in institutions. Similarly 'we' have said we want to live in our own homes for as long as possible and not gointo a care home. I'm sure htat is true for nearly all who have a partner but the loneliness of all those living living alone in the later stages of dementia doesnt bear thinking about.

What else can we do to help - in the early stages, middle stages and later stages of dementia. ??
 

Chris

Registered User
May 20, 2003
243
0
Just a PS ... to Norman & Bruce - I know the feeling when friends & family vanish too - Dad said "I feel as if the world has turned its back on me " - I trust I was the one exception !! I started to feel like a teenager again as spent so much time in their house where I'd lived in all those years ago. and when i left in the evenings sometimes Mum said "Dont be back late mind" - when I was going home to my house & husband !!!!

when we went on holiday I told Mum & Dads neighbours & gave them my tel no - they said the'd keep a close eye out. Naively I really thought theyd knock on the door a couple of times - they had know them a veyr long time & quite well. On returning Dad said he hadnt seen a soul al the time wed been away I was so angry and sad . Couple of years later chatting to same neighbours they said they always used to look out for Mum & Dad - noting when the curtains were pulled , the lights went on and off and that the milk was taken in !!!! Thanks a bunch !! Reminds me of SS and only offering 'crisis care' !!!!

On a lighter note - when my husband & I left Mums care home one evening & she came to door with staff to say goodbye - she said "No funny business mind" !!! My husband said "I think it s a bit late for that " and she laughed. Seems life time ago .
 

lisa

Registered User
Apr 29, 2005
3
0
we have told, it helps

My mother-in-law is in the early stages, the consultant has discussed her diagnosis with her. We don't know how much she has taken on board about her future, but it has made things easier in the respect she is aware we are trying to help her sort out her affairs and willingly accepts the help. Although perhaps it just helps us to knowing we are respecting her as still a person by telling her the truth. She oftens tells us " I told (whoever) that I have Alzheimers, they say you don't look as if you have" !!
regards
Lisa
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
To tell or not tell

When my husband Peter was doing "silly things" lost his memory completely. He knew something was wrong. From the Doctor to Consultant, test at Oxford it was confirmed. Peter had Alzheimers and had had several mild strokes. I had spoke to my youngest daughter my fears when she visited one lunch time and when I said I think Peter has Alzheimers, Fleur unlike her, flew in to a rage and crying said don't you dare put that tag on him (my 4 are so close to their step-dad).
Fleur said it was due to the worry and stress of my disabilities that was causing Peter to act that way. Then at Oxford after spending the day there with Peter and the Consultant it was confirmed. Peter was actually relieved. I burst into tears. I wanted tobe so wrong. Stimulating Peter on a daily basis for 8 months, he regain basic memory. He was able to ask me about Alzheimers. I told him I would never lie as he would have seen through that anyway. So as he deteriorated, became incontinent, loss of speach, he was still listening and when I asked did he understand - yes. Sometime no and he would signal go over it again and again which so many of us understand that situation. At the end of the day it is down to the nearest loved one as to how they would want to know news good or bad and it varies from case to case. Best Wishes. Christine