Dementia
MIL had Alzheimers, hubbys paternal aunt had vascular dementia. Vascular dementia took her in five years, with decline being a step down process with each mini stroke. His mother had a slow decline over 15 years. Both are equally horrendous.
We learnt a few coping mechanisms. The Alzheimers society can provide a lot of pointers in the right direction. For instance, MIL did not have to pay council tax, and got a rebate from the time she was diagnosed. The Alzheimers society can also give help in filling forms in.
Get Power of Attorney in place before diagnosis, at the first signs of forgetfulness. Otherwise the council can take over, sell the home and put your mother in care whether you like it or not. By the time your elderly relative needs to have someone with power of attorney and a valid will made, it is too late. Do it while they are still compos mentis.
Dont argue that they are wrong. When she insisted she had had no breakfast, just give her another slice of toast. Hubby did have to draw the line when his mum thought he was her husband, because he looked like his father did when younger. When she insisted she had to get home to her mother, we used to distract her by saying that she was out shopping and would collect her later. Then change the subject.
She thought programmes on television were real. When she broke the second television by throwing something at the bad man, we resorted to carefully selected DVD's. The good thing was she never got bored with them, they could go on a loop , because she had forgotten she had seen them by a couple of hours later. Ken Dodd, Morecombe and Wise , and David Attenborough nature programmes went down well. She also like programmes about tootling along canals.
Body clocks go haywire, sleeping through the day in four hour stints, then being awake most of the night. Unless you want to resort to sleeping tablets, you have to live with this. Sleeping tablets in elderly lead to more falls and hospitalisation. Having supplied medicines for nursing homes, it seems that many people go on sleeping tablets as soon as they go in to a nursing home. Nursing homes deny that this is for the convenience of staff.
Carers need respite otherwise they get ground down as well. Social services try to insist that the caring is a social problem , and should be paid for or done by the family.
However, in the later stages it is a mental health problem. MIL used to hallucinate, talking to people that were not there. It then becomes a mental health issue, in that it was not safe to leave her on her own. if it is a mental health issue, then it becomes nursing care, to be paid for by the NHS. The powers that have to pay for this will argue it is not, because they know that family will not abandon their relatives, or that there is a lifetime of saving out of taxed earnings to pay for it. We got 24 hour cover at the finish, paid for by the NHS. Did we feel guilty at the cost of keeping her in her own home when it would have been cheaper for her to go into a Nursing Home. No.
If drug addicts who have never done a days useful work in their lives can get hot and cold running social workers, key workers and the rest, because it is a mental health issue, then someone who has worked and paid taxes all their lives should get at least the same.
Posts
OH was diagnosed with Alzheimers ten years ago. It has progressively got worse. I am the only person he recognises now. I record football matches for him as he doesn't remember he has seen them before. I record programmes for myself and watch them late at night when he is in bed.
. For the past five years I have been a 24/7 carer effectively giving up my own life. Tried him at a day centre for dementia sufferers but he came home in tears.
I get respite through Crossroads, 5 hours a week, funded by social services, a reduction in council tax and just over £50 a week attendance allowance. the latter goes to pay for occasional gardener and a cleaner for two hours a fortnight.Power of Attorney was set up ten years ago.
Life could be worse. He is not bedridden and I can still take him out in the car and he appreciates what I do for him.
As Fidget says, I do not feel guilty at accepting the small bit of financial help.
Last edited: 17 January 2017 11:42:50
Dementia is so cruel. There are so many families going through this ugly terminal illness. As fidget explains, the best practical action is to seek help and advice from multiple sources. What is particularly awful about dementia is that symptoms and problems can be slow to progress and families often have to do more and more in the way of helping and keeping safe the person - this can creep-up to an unexeptable or unmanageable situation.
In terms of enhancing the quality of life for the person with dementia, fresh air, gentle activity and reminiscing conversation can be helpful. My Grandma wouldn't have been able to go shopping or make a list for ingredients but if I gave her the items for the Welsh Cakes she could mix them up and give me tips to make them (me doing the stove part as turning on/off cookers safely can be an issue).
Joyce : posted mine before I read yours sorry - so may I say that I take my hat off to you for caring for your husband so wonderfully well. You are making his life so much more enriched and dignified - the most precious love and care any one can give.
Last edited: 17 January 2017 11:54:07
AuntyRach - Having been together for 50 years, I wouldn't have it any other way.
I know that if he went into a nursing home he would "turn his face to the wall". . . . .
Reading these posts has me in tears. I looked after my mother when she suffered with Alzheimers and know what a terrible illness this is. I eventually got help from the social services, they came in twice a day to make sure she took her meds and made her a sandwich or a bowl of soup for lunch. This let me keep working as I needed my job. They carers allowance is shockingly low. I myself was suffering from depression and anxiety and caring for mum made me much worse. But as the rest of my siblings took a back seat I just got on with it. The respite she got was a week here and there in care home But it gave me the break that I needed. Mum was eventually taken into care when she was a danger to herself and neighbours by nearly setting the house on fire. I looked after mum for 4years and was with her when she died and it was a blessing to know that she wasn't suffering any more. That has been the worst 4 years of my life. There is not enough help for Dementia sufferers and the toll it takes on their families. My mum has been gone now for 5 years and I still have the mental scars I was left with through what I witnessed as she deteriorated week by week. I feel for anyone that has to care for a loved one that has Dementia. Its totally soul destroying and heartbreaking.
My friend was diagnosed a few months ago with Alzheimers. She is only 61, lives on her own, no family. I hate this diease. She can barely do anything on her own except with help from a couple of friends and quite frankly, I cannot give her the time and attention she needs any more. No sooner do I do one thing on her list but two others creep on. And everything seems to need multiple trips and/or phonecalls. And it will only get worse. I despair.
Hogwood- a care package needs to be set up, via social work, for your friend. There can sometimes be quite a wait for things to go into action. It took nearly a year from my request, for a few hours respite, to getting it. three years later, I requested another two hours and it was three months before I got it.
It's a vile disease and I take my hat off to everyone who cares for a relative with it. It possibly/probably affects the carer more than the person who has it.
Fidget and Joyce are right - there should be no guilt in taking whatever help you're entitled to.
I know my dad was frightened my mum would be taken away from him, which is why he hid a lot of things that happened. She wasn't particularly bad, but bad enough. Dad had never asked for help with anything his whole life, and that made it harder, but it's how he was and you can't change that.
I hope you can get some help for your friend hogweed.
No one should have to struggle for help with this in the 21st century, but it's a ticking time bomb.
I live in west central Scotland - not where that photo is...