1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    I've just joined, sorry about formal title but it wouldn't let me register as Carole. I am so glad I found this site. My husband is now 59 and was formally diagnosed with alzheimers 3 years ago although my daughters and I think he started showing signs some good while before that. In those years I have gone through evey emotion in the book, in fact it some times seems like a journey to hell with no path back. We have watched a loving, jolly intelligent husband and dad change beyond all recognition into someone very grumpy and unaccepting and someone who has never spoken the word "alzheimer" once and does not either accept or talk about it.
    My daughters are most supportive and help me all they can but they live away and have homes, partners and professions of there own. For the first couple of years I had no help at all from professionals and it still horrifies me that there is no provision at all for younger sufferers any where near us. I am only 54 and cannot afford to give up my demanding teaching job so now jim has to spend one day a week with his sister who has supported me terrifically and 4 days a week in day care which he never wants to go to, so each morning I have a battle to get him there before I go out to work.
    I am frightened to think of the future I know it certainly isn't the one we had planned and worked for and I know it's going to be a solitary one for me as Jim slowly slips more and more away from us. How do I cope with finding somewhere for Jim, loosing my job, giving up the family home of 30 years to downsize to something more affordable, and whatever else I may have to deal with which I haven't realised yet.
    In all this time I have tried to find someone near me living the same problems who I could chat with over coffee or better still a glass of wine but I could find no one. Until recently we didn't have a formal branch but we do have now. So I am glad to find this site where at least I have found people of similar age with similar problems. I know all sufferers differ with the disease but it is a common ground and a great source of comfort to know I am not as alone as I have felt over the past couple of years.
    If anyone has any help or knowledge of provision for younger patients I would be grateful.
    Many many thanks Carole
     
  2. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Carole
    Nice to meet you, even though we'd rather not be chatting under these circumstances. I can not profess to understand what you are going through, as my dad was early 60's when he first started showing signs of AD. Please always make use of the site to moan and groan - we all do. As for nursing homes for young AD sufferers - there is a very young man in my dad's home - i would say mid 40's - sadly he has no one else his age - they only have 2 homes in the Eastbourne that take EMI patients- so even though Dad was 70 when he went in there was no real choice.
    Hopefully someone more local to you will reply, but if you want a chat to a fellow professional - feel free to send a private message.
    Wishing you well, half term is nearly here - enjoy your hubby while you can - i know my mum would say the same.
    Take care love Susan
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Carole and welcome.
    Yes, I wish there had been something like this forum for me when I first started to appreciate the enormity of what was happening to my wife, and how it was going to affect - everything.

    I had the time of someone from the local psychiatric team for a couple of hours a week for a few months, and the rest of the time I was on my own looking after my wife, night and day. They encouraged me to put Jan in a day centre - she hated it as all the others there were so much older - and then threw her out because they said she disrupted proceedings.
    They suggested I put her in for respite when I was supposed to go abroad for a couple of days on business. Though I always resisted respite [it was supposed to be respite for me, but I knew there would be no respite as I would always be worrying about her, and it was better to have her with me], I agreed to check out the place. They showed me around, gave me all the details and then told me that of course, they couldn't take her for at least four months, way beyond when I needed it.
    That was the sum of the help I had from any of the services up to the point where, on assessment and in the care of the hospital, Jan fell and fractured her pelvis, and was then never able to return home. Such a shock.
    At that point, initially and out of the blue I was told, in no uncertain terms, to find somewhere for her as she was now blocking a much needed hospital place. I looked and found that the one nearest home, at £35,000 per year [which was more than I earned] couldn't take Jan anyway because it was not EMI registered. I got mad and had the hospital doctor removed from Jan's case. I was then told that they had a place for her, and the basis would be Continuing Care [ie £0], because of her needs. This was a life saver, not only because I was at a loss to see how I could afford any form of care, but also because the home itself was far better able to cope with dementia sufferers as that is all they take, and there is a waiting list as long as one can see.

    Hmm.. not much help, I'm afraid, but at least my story turned out as well as it could for Jan, I guess. I think that's the point, you see. There's no perfect answer, but your love and care for your husband's needs will ensure that things will be better than they would be, without.

    I really recommend that you use the forum as often as a question comes up where you can't find an answer. There's no guaranteeing that we'll have one either, but you will appreciate that you are part of a band of people, all with pretty much the same experiences. From my brief experience of this forum, I have been greatly touched by the responses and care that the registered users take to provide them.
     
  4. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Dear Carole

    Welcome to the forum - I do hope that it helps you as it has helped me.

    Your story was so much like mine (except that I am now 59 years old and my husband is 60 years old, and he is further down the line than your husband by the sound of things).

    I have been through the same emotions and fears - my husband was also loving, jolly and intelligent before the AD struck some 8 or 9 years ago - and we didn't get a firm diagnosis until about 3 years ago, although I always knew what it was. He had to give up his professional career about 6 years ago, and I had to give up my job 4 years ago, which meant that we had to sell our family home and move somewhere smaller, in order to survive on Incapacity Benefit, Disabled Living Allowance and Carers Allowance and the small nest egg left over from selling the house.

    I had put off leaving my job and selling the house as long as possible, as I didn't want to lose the income and our home on top of effectively losing the husband I knew and loved. As it turned out I regretted the loss of the job and the house very little compared with the pain of losing my husband to all intents and purposes. It quite suddenly became clear to me that the time had come to make those decisions as I could see that he could no longer cope without me at home.

    He has since deteriorated to the point where just before Christmas he had to be admitted to an Elderly Dementia Assessment Ward in a hospital 20 miles away, where all the other patients are 20 or 30 years older and mostly much more physically incapacitated. The consultant and CPN freely admit that this place is not appropriate for him, but appropriate facilities for someone of his age and condition with difficult behavioural symptoms just do not exist anywhere in this area.

    He is quite heavily sedated a lot of the time, and although there is talk of him being eventually moved to a care home when his behaviour calms down, there doesn't seem to be a suitable place around here either - just another of the problems which go with early onset dementia.

    Dealing with everything that goes with this disease is a long and difficult learning process, and as it goes on you find yourself dealing with things that you never thought you would be able to. Things that seemed terribly important become more insignificant but unfortunately other concerns take their place. I can only say the obvious - take it one day at a time, find out as much as you can and don't hesitate to fight your husband's corner (and your own) when it comes to getting information and the help you are entitled to from the professionals. After all, if we don't shout, nobody else will do it for us!

    Do keep in touch via this forum. If there is anything you want to ask me in more detail, please use the forum or send me a private message. I'm sorry I can't join you for that glass of wine - I'm sure it would do both of us some good - but next time I have one I'll think of you, and perhaps you'll do the same for me!

    Kindest regards

    Ruthie
     

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