Younger Sufferers

[Spike]

Hi,

My mum was diagnosed with Alzhiemers at the age of 51, and ever since she has been diagnosed the hardest thing has been the constant arguing with Social Services (SS) , it has been one thing after another and as her only daughter & next of kin I had to make the decision to put her into care, and after much consultation with the SS I made the decision that it would be in her interests to have 24hr professional care. She was experiening imaginary people, rooms, having conversations with her mum & dad who had died years ago, putting an electric kettle on the gas hob while plugged in, leaving the gas on without igniting, the dangers to herself were endless. Her friend did not agree with my decision and we spent the next 6 months back and forth to SS and it all turned quite nasty. In the end SS decided to ignore the decision of the Next of Kin and EPA and allowed my mother to return home, after almost a year her friend decided that he could no longer cope and again I had to make the decision to put her into care. My mum now resides in full time residential care, with a fanastic home, which all the staff adore her, and her freind stills visits on a regular basis.
As her only daughter I have had to make all the financial and emotional decisions and all the time I have never felt any support from the Social Services, in actual fact they have made the whole experience even harder. Even now practially all her savings have been used for her residential care, they are still arguing about the Income Support Allowance for her.
In the UK the number of younger people with Alzheimers is increasing so why are there still a serious shortgage of homes in the South / South East speciallising in care for younger people!

 

[Angela]

My Mum was diagnosed at the age of 52 with another from of dementia. I too had to consider that she might be safer in a care home, but there are none that I know if in Wales either, that are acceptably for a younger sufferer.
This seems to be a very common difficulty that families are having too face.
We were fortunate that my Mother actually got a lot better after she recieved treatment, but she still has the dementia and living alone, I still have the fear that when she does get worse, she will have no where suitable to live.

We are becoming more aware on younger sufferers generally, and I can only hope that soon we will have the care homes we need.

 

[Spike]

Younger People with Dementia

Hi Angela,

We found the home that my mum is now in by what I can only describe as 'pure luck'! When my mum was first sectioned she broke her wrist and leg and was placed in her residential home for a respite period until she was able to return to her home enviroment and contiue to be looked after by her friend. When she got to the stage where she needed 24 hour special care we requested that she returned to the same home. This home is for the elderly but do have an area for Dementia sufferers, so I knew that they had qualifed staff. Social Services applied for special permission for her to stay as a permanent resident, which was granted as they knew from her previous stay that she communicated well with older people.

It is worrying to know that if she had not been able to communicate so well with older people she would have been placed in a Centre for people with learning disabilites or a Nursing home of which neither would have been ideal for a young person with dementia and certainly would not have been suitable for my mums welfare!

The Alzheimers Society do publish a list of care homes that specialise in care for Dementia patients but again it is based around Elderly People. There are a couple of homes on this list that state that they do have faciliaties for Younger Sufferers, but based on pure experience this is only fictional.

I can still not understand why there are no homes that do care for the Younger Sufferers considering how many Younger Sufferers there are in the UK and it could make an already hard decision to place a loved one in a home easier knowing that they were not surrounded by people with a 20-40 year age gap!

The only advice that I have really is start your search early, before your mum needs to go into a home and make sure you really do have the best place possible.

I wish you all the luck.

 

[Angela]

Thank you for your reply Spike.
I have not really had to think about looking for a care home for my Mum as she is living independantly at home, but as you say I should be looking for the future.
I too have had to battle with her team about what is best for her. Unfortunatelty she is cared for by the Adult team, who I know through my own job have no experience of dementia at all. Indeed they ask me for advice!
What makes my situation harder is that mum was a nurse in a older persons hospital and for over 20 years and Matron of a nursing home, when she is quite poorly, still thinks that she is. She would be a nightmare for staff in a care home!

 

[Spike]

Hi Angela,

When they were in the early stages of diagnosing my mum all the 'professionals' were trying to convince me that my mum had a learning disablity - which is laughable who an earth at 50 years old develops a learning disability? Even after an MRI scan that showed her brain deteriating and confirming Cerebal Atrophy (a form of dementia) they still were not entirley convinced and still tried to place her into a home for people with learning disabilites.

I do not belive that there are enough 'professionals' that understand Younger Alzhiemers and the support needed for both the sufferer and those closest to them, and in my case actually caused a serious rift which caused more distress to again not only the sufferer but also the people closest to her, when in fact this is the time that they really needed to be listened to, been given a helping hand and supported - but sadly it was infact quite the reverse!

My mum belives that her home is where her mum & dad are (they passed away years ago) and continues to revert back to her childhood. I can not praise the staff enough for their patience and kindess offered to mainly my mum but also those visiting and the understanding to us all. I could not wish for a better home for her and I am pleased that I never gave up in beliving what I knew what was best for my mum and not a bunch of 'professionals' that would have just stuck her anywhere without understanding her needs.

 

[DAVE/JOE]

MY WIFE WAS DIAGNOSED WITH ALZHEIMERS AT THE AGE OF 50
SHE IS NOW 57 AND IS IN A EMI NURSING HOME.I CARED FOR HER AT HOME UNTIL I FOUND IT TO DIFICULT.I SEE HER EVERY DAY AND I STILL CONSIDER MY SELF A CARER.I STILL MAKE ALL THE DECISSIONS REGARDING HER CARE AND I HAVE EVERY CONFIDENCE IN THE HOME.I ALSO FOUND THE SOCIAL SERVICES
(FLINTSHIRE N.WALES)TO BE MORE THAN HELPFUL AT ALL TIMES.
I ALSO HAD A VERY GOOD C.P.N. AND MY WIFE AND I LIVED IN THE U.S.A. IN THE 80s AND HAD I BEEN LIVING THERE NOW I DOUBT I WOULD HAVE HAD SUCH GOOD CARE.EVEN THOUGH WE
HAD GOOD INSURANCE COVER.IT WOULD NOT HAVE COVERED US FOR 7 YEARS.THE TIME MY WIFE HAS HAD THE ILLNESS.I WILL
ALWAYS BE GREATFULL FOR THE HELP OF FLINTSHIRE SOCIAL SERVICES.AND I HAVE JOINED MY LOCAL ALZHEIMERS BRANCH AS A COMMITTEE MEMBER AND I AM FULLY COMMITED AND WORKING WITH SUCH CARING PEOPLE.

 

[Angela]

Hi
I am from west Wales, and there is obviously a difference between our teams.
I would presume that you and your wife have had the help from the elderly team rather than the adult team. I apreciate that your wife is by no means elderly, but the elderly team does have the expertise to deal with the illness of Alzheimer's, as does our team, my argument is that my Mother is with the adult team, whom have no experience of dementia sufferers.
I work with the elderly team, and our CPNs and specialist social workers are also as informed and understanding to both the client and the carer as your team appear to be.

 

[DAVE/JOE]

HI. MY WIFE WAS WITH THE MENTAL HEALTH TEAM AT FLINTSHIRE
I REALISE THAT THERE ARE PROBLEMS WITH THE SOCIAL SERVICES .MY CPN WAS HONEST ENOUGH WITH ME AS HE HAD NOT HAD ANY DEALINGS WITH SOMEONE SO YOUNG WITH ALZHEIMERS.BUT WITH THE HELP OF THE SOCIAL WORKER WE OVERCAME THE PROBLEMS.I REALISE THERE ARE A LACK OF
FACILITIES FOR DEMENTIA AND THAT IT SEEMS TO BE A FORGOTEN ILLNESS.I ALSO THINK THE PROBLEMS LIE WITH PREVIOUS AND PRESENT GOVERMENTS.AND LACK OF FUNDINGS TO OUR SOCIAL SERVICES.IN NORTH WALES EMI NURSING HOMES
ARE CLOSING AT AN ALARMING RATE.
GOOD LUCK N.WALES