Dementia daycare centres.

[Anna B 1,401]

Let's face it, care for the elderly in this country is pretty appalling, and seems to be getting worse. No one seems to care these days, and even family are so busy trying to keep bread on the table they simply don't have time to take on more responsibility.

 

It needs sorting and organising. No matter how unlikely it might seem now, we'll all be old one day.

[Daven 10]

My lovely Mum is now 88 years old and at the age 0f 80 she was diagnosed with Alzheimers Disease - 'beyond the early stages' was what was said.

She had always been a very active lady - very fit for her age and with a good circle of 'friends' who she enjoyed time out with.

As her illness progressed, it became apparent that some of her 'friends' were less than understanding of her illness and began to exclude her from activities. Thankfully in some ways, the disease process had moved on to a point where Mum wasn't aware of this prejudice but she often asked me why some of her 'friends' sometimes said very cruel things such as 'you need to start looking after yourself' and 'can't you pull yourself together'' ?

As things progressed Mum needed home carers to visit to prompt her every morning and evening to wash and dress appropriately and to remind her to do simple things such as go to bed at night, eat and drink and go to the toilet.

Despite daily visits from family and home care , it became apparent that Mum needed more input - that was when AgeUK came to the rescue. After a lot of persuasion, Mum agreed to attend a day care centre twice a week - a centre that cared for elderly people with dementia. She loved those days. A bus picked her up in the morning, the volunteers making sure the house was secure and , on return, again ensured that Mum's heating was on and that she had locked the door behind her. She was given a cooked meal and was involved with activities such as bingo and talking about the news and what was happening in the world.

Because Mum had always been careful with money and , since Dad died, had lived a 'careful' life, she had savings - so she had to pay in full for the initial twice daily and then three times daily visits from the home care service. None of the care Mum has recieved over the past 6 years has been paid for by the NHS.

Six years ago and after a fall down the stairs at home, Mum had to go into 24 hour residential care for her safety and security. The home she has lived in for all of the six years since has cared for her with such dignity and love that it defies description. She has had to pay for her care for the first five years at a cost of around £1500 per month - this has been taken out of her savings which have now mostly gone. Had it not been for the wise move of signing her house over to her children many years ago that would have had to be sold to pay her care home fees.

Now that her savings have almost gone SCC has taken over payment but the process of assessment for that to happen has taken a long time and has been very distressing for all of the family. Relatively recently she was assessed as qualifying for extra funding for nursing care but this money couldn't be paid to the wonderful residential care home she had lived infor the previous five years - she would have to move to a different home for those with nursing care needs which we felt could cause her too much distress. People do not cope well with a total change of environment even at the final stages of the disease which is where our lovely Mum now is. Thankfully, the residential care home where she lives are happy to continue to give Mum all the care that she requires for as long as we are happy for them to do so.

However, now that Mums journey with dementia is now nearer the end than the beginning we know, as a family, that the choice of home for Mum was a very good one. She has been cared for with respect and with the greatest of care. She is bed bound and needs everything done for her. The family visit her regularly and when we occasionally get a smile of what we think is recognition it makes our day.

I so miss the long chats we used to have over a cuppa and putting the world to rights but I know that Mum lives somewhere where she is loved, respected and treated with immense dignity.

Dementia is a cruel disease which is very much misunderstood. The lovely Mum who loved me and my siblings for all of our lives has now mostly disappeared although the very frail lady we visit regularly is still present. It's impossible for her to understand when we tell her how much we love her but we still do it - maybe she takes something we say in sometimes. The kisses and cuddles we still give her will, hopefully, stimulate some memory of how much she is still loved and respected.

Dementia is often described as 'the long goodbye' - a protracted grieving process over many years. Slowly you see the person who you love disappearing - their personality and being is slowly being erased. There have been very many tears and, I suspect, there will be many more - but there has also been a lot of laughter and my faith in good people has been maintained by those who care for my lovely Mum every single day.

Edited July 28, 2016 by Daven

[Anna B 1,401]

Daven, it's lovely to hear of a caring service that does what it's supposed to do and treats your mother with the love and dignity she deserves. If only they were all like that. Thanks for sharing.

[Daven 10]

I do realise that we have probably been fortunate in finding such a wonderful place for our lovely Mum to spend her final days.

The sad thing is that all of her care until relatively recently has been paid for by Mums savings - money that she saved and inherited from her mother and my Dad who died at the age of only 59 years.

The concept of the NHS caring for us all from the cradle to the grave is absolute rubbish.

As has already been said, Alzheimers disease and dementia is an illness and not a direct result of growing old. Why then is the care these people need not funded by the NHS ?

[Anna B 1,401]

I do realise that we have probably been fortunate in finding such a wonderful place for our lovely Mum to spend her final days.

The sad thing is that all of her care until relatively recently has been paid for by Mums savings - money that she saved and inherited from her mother and my Dad who died at the age of only 59 years.

The concept of the NHS caring for us all from the cradle to the grave is absolute rubbish.

As has already been said, Alzheimers disease and dementia is an illness and not a direct result of growing old. Why then is the care these people need not funded by the NHS ?

 

That's what I want to know.

 

It won't change without a mega campaign and a whole load of awareness raising, but as with many things these days, nobody cares until it affects them.

 

We are all going to grow old. So now, while we still have the strength, we need to act together.

[Daven 10]

I totally agree Anna B

The whole assessment process that my Mum went through went on for years - this includes appeal after appeal and meeting after meeting.

The process is very complicated and is made worse by those dealing with the process being moved around to different roles on a seemingly regular basis so that it is impossible to be able to have a permanent point of contact with anyone. Each time I tried to contact anyone to find out a progress report I would have to go around the houses and end up having to tell the whole story to someone new.

At the beginning I was determined to get some kind of resolution but as the years went by and Mums condition deteriorated and the goalposts were moved - I became totally disillusioned and weary of the whole thing. I truly believe that those dealing with this process rely on this and I wonder how many relatives have the perseverance to actually get any resolution ?

[ReginaldD 10]

I've just heard that daycare centres for dementia sufferers cost upwards of £48 per day. Can anyone tell me if this figure is correct?

 

I was shocked as these sort of day centres used to be free as part of the NHS. It seems an awful lot to me. I've looked on various websites and seem to be able to find out everything except the price.

 

Has anybody on SF got any personal experience of them?

 

£48 is roughly correct though often more too. If someone is at the point where a day centre is apt for them such a person would normally qualify for attendance allowance which is £55 per week.

AA is for using for such expenses and would be a good use of such a benefit.

 

---------- Post added 03-08-2016 at 00:19 ----------

 

Age UK also offer their own Dementia day centre, though not cheap:-

 

http://www.ageuk.org.uk/sheffield/our-services1/wellbeing-centre/

[happyone 10]

Making space run respite hubs in sheffield and its a free.

[Daven 10]

http://www.sheffielddirectory.org.uk/kb5/sheffield/directory/service.page?id=1G03UFG0fLQ

 

http://www.cqc.org.uk/location/1-684855967/contact