dementia advice .

bryanb

janeawej wrote: »

Make sure you set up an enduring power of attorney as soon as possible,

Sorry but it's much too late for EPA. they finished some time ago, unless previously set up.
Nowadays only Lasting Power of Attorney is available, set up via solicitor & Court of protection. They are more difficult and expensive, but still essential to do ASAP.

hartcjhart

more here
http://www.helpguide.org/elder/alzheimers_disease_dementias_caring_caregivers.htm

onetomany

dementia is so sad im a home carer in september i visted a lady who could do most things now she carnt get out of bed or dress etc im so glad you are looking out for her xxxxxxx

weanie

My mother died in hospital on Christmas Eve. She was a dementia sufferer - but it was really her other medical issues which killed her. Mum was 80. She has been in a very poor state for over two years and we moved her to a Rest Home then after trying very hard to cope with her Vascular Dementia 'inhouse' for probably two years before this. I could write a book on the strategies we employed to maintain some memory or to at least help her access information for daily needs and ethe sad and cruel tricks her mind played out for her. Many things helped a bit - but there was nothing that really stood out - a huge calendar with dates and appointments marked and ticked off, a list of phone numbers on the wall, a memory book, a photo album containing pics and labels of family, a book of snaps which showed Mum participating in family events, Meals on wheels, fish and chip or pizza deliveries ordered by us, lots of stays over in my home, accompanying her shopping, specialist appointments etc etc
Social Services introduced us to Direct Payments and Mum was granted about eight hours each week of help in the home and she had to make only a quite small contribution from her pension. I had to manage these payments and employ people. This support is wonderful - but in Mum's case, her decline was too fast to properly benefit for long. When Mum's needs were quite high and her dementia moved to a 'moderate' level [according to the Psychiatrist], then it was very useful to have the benefit of vouchers which we spent on respite care in teh rest home. This also gives an opportunity to try out a couple of homes. I think this is given as after an assessment of the carer though [in this case - me]
We suspected dementia for some considerable time but we also knew Mum was a 'difficult' indidual and our approach to her was always cautious as she had real issues of distrust. After my father dies four and ahalf years ago, we approached the doctor and he advised us to get Mum to sign a letter agreeing that we be able to discuss her situation. We did this, we told him of Mum's odd little ways and he kindly agreed to make a random call on Mum. This visit confirmed our worst suspicians and a brain scan at little later re-confirmed.
Along with Mum, I attended sessions with the Community Mental Health Team and we were offered the medication to slow down the dementia but were so off put by the possible side effects and were so overwhelmed by the meds she was already required to take for other conditions, that we decided to muddle on without. I bitterly regret this now because we never thought that the decline would be so rapid.
Four years ago, Mum was a colour co-ordinated, beautifully groomed and attractive woman who enjoyed our attention and company and who cooked, cleaned and generally managed her home and finances. By August of this year, Mum was doubly incontinent, unable to dress, wash, feed, speak more than random utterances, with no engagement to family or staff and unaware of what had happened less than a minute ago. She had no memories of her previous life to comfort her and could not answer a question posed to see if she was thirsty, cold or hungry.
If the dementia had been as slow as we had hoped, Mum would have been living in my home and ended her days with us but sadly, she needed 24 hour care and we were unable to offer this.
This disease is wicked and cruel but Mum was never really told about it and just accepted all the monitoring along with the monitoring by the other specialists who were charged with her care.
This is a snapshot of Mum's decline but some people are very lucky and their decline is hugely slower. I wish you courage and patience and hope your situation shows a more gentle decline than ours. Good luck

anna_grant

My mum has dementia and is now in a BUPA home which specialises in coping with people with dementia. Mum managed to hide it at home as she would put on a front for short periods of time - thus fooling the doctor who vistsed at my insistence (I live 200 miles away and mum lived on her own).

I found that the thing that helped me most was a book called 'Contented Dementia' by Oliver James. It helped me cope and stopped me getting as frustrated with my mum as it helped me understand the situation more from her point of view. And how frustrating the situation is for her!

Five years on from her eventual diagnosis, the situation is okay for both of us. I know the time is coming soon when she won't recognise me and I sometimes see a look in her eye when she turns to look at me which indicates that she's not sure momentarily.

janeawej

Sorry to hear about your mum Weanie, I lost my mum to dementia 3 1/2 years ago, luckily I managed to get her home for her last 4 days, however she unlike your mum still more or less knew who we were (my grandmother was more like your mum in her symptons and we werent able to care for her at home due to her huge needs) I still miss Mum every day especially at this time of year. At least your mum isnt suffering any more, try to remember the good times, it sounds like you did everything you could for her.
Jane

Mojisola

anna_grant wrote: »

I found that the thing that helped me most was a book called 'Contented Dementia' by Oliver James. It helped me cope and stopped me getting as frustrated with my mum as it helped me understand the situation more from her point of view. And how frustrating the situation is for her!

I, too, found this book very useful. It was a bit daunting at first but I started picking out small things to try with Mum and it has made quite a difference.

anna_grant

Mojisola wrote: »

I, too, found this book very useful. It was a bit daunting at first but I started picking out small things to try with Mum and it has made quite a difference.

The main thing I found useful was thinking of our lives as photo albums. If you do not have dementia and someone says 'do you remember so and so', you flick back through your album and say 'yes, I remember that'.

People who have dementia don't have this album - or they do but with no recent photos in it. You say the them 'do you remember so and so'. They flick through the photo album and have blank spaces. That then scares them because they think they should have a matching photo but don't.

It can be as simple as 'do you want a cup of tea?' They think 'I might but when did I last have a cup of tea. that will make a difference to whether I want one now. I can't find the photo that matches my last cup of tea. Why can't I find that photo?'

It's part of the reason why people with dementia have problems when asked to make a decision e.g tea or coffee? Which do I prefer?

cavework

Dementia is also known as ' the long goodbye'
Dad had a stroke in April this year .. he is 88 but the morning of the stroke he went shopping in Tesco's and drove there and back.
Things changed within 24 hours
He now cannot recognise his wife ,(me) daughter or his grandsons .He has Vascular dementia
He also gets very aggresive when we visit . The worst part is he also has Dysphasia which makes things almost impossible when trying to communicate with him
My mum is 86 and he bullies her when we visit.
I have to consider my Mums wellfare so we only take her to visit every 2 weeks now
We go every week
I feel so guilty leaving Dad in that home but there is no other option as he requires 24/7 nursing care.

CAE

Weanie - So sorry to hear of your loss.

My mum has been in a home with dementia for the last four years, but the mum I knew went long before that. She was 72 when it was decided that Dad could no longer cope, even with another member of the family visiting at most times of the day. We were at our wits end when Social Services agreed to a 2 week respite. She never came home again, and the staff at the home were amazed that we had coped so well up to that point. Leaving Mum there that day was one of the worst moments of my life, but we knew that she needed 24/7 care from professionals.

Four years on she no longer recognises anyone, even my Dad who visits every other day. She no longer walks, holds a cup or feeds herself. Is doubly incontinent and does not talk. She is hoisted from bed to wheelchair to chair in the lounge, where she just sits. Although the home does have activities etc she is unable to take part. When I visit each week I sit and talk to her and hold her hand, and she rubs my hand with her thumb. That's it.

Make the most of the 'first stages' of dementia, as you can never predict when the next stage will arrive. Do not be too proud in asking for help. That was our downfall, as we tried to cope alone for too long.

Dementia is a cruel disease and affects the whole family.