1. Sad Scully

    Sad Scully Registered User

    May 25, 2015
    8
    Southampton UK
    Hello to all at talking point. I am a new member and would very much like some advice. My husband was diagnosed Alzheimers mixed vascular dementia in December 2013 during a stay of 3 months in hospital. I fought like a tiger to get him home, which I achieved Feb 2014. We had a good last summer together. His condition deteriorated rapidly and had to go into a care home October 2014. I thought I would lose him at Christmas - he wasn't able to eat or swallow. After I asked the GP to stop all medication, he amazingly perked up and was able to eat (soft diet fed to him and thickened liquids). He is now deteriorating again (it has been incredibly rapid). He is virtually bed bound as there are insufficient staff to give him the one to one care that he needs. I feel he only has a matter of weeks left and my dearest wish would be to have him home again so that I can be with him for his final journey. I know it would not be easy but with some help I know I could do it. What I would like to know is who should I approach about this and what are my chances of success. I would need a special bed (on loan) and help with his personal care at least once a day. Does anyone have a similar experience or could point me in the right direction. I am 58 and reasonably fit, Ben is 69 and barely knows me anymore but responds to my voice and touch.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,659
    Kent
    I think you need to apply to Social Services but am not sure. I hope someone with the experience will soon be able to offer better information.

    Good luck.
     
  3. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    I also think that it is social services.

    There would have to be a needs assessment and a care plan set up to show that his needs could be met at home.

    Is he currently self funding (contract and current care plan set up with him/you) or LA funded (contract and current care plan set up with LA)?
     
  4. Sad Scully

    Sad Scully Registered User

    May 25, 2015
    8
    Southampton UK
    Thanks for your reply, we pay what was assessed by the council's financial assessment, and the council pay the balance. Although this has crippled me financially (Ben supported me since I gave up my career to care for him), the reason I would like to have him home is that I feel I can make his remaining time more peaceful. The care home is good and the staff are lovely but as with most care homes, chronically under staffed. If I could travel each day to spend more time with him it wouldn't be so bad, but as I don't drive it takes 2 and a half hours each way and costs £15.50 each time on public transport. I can only manage 3 times a week at present. I know I would need help with his personal care - he can do nothing for himself, just lie in bed looking so frightened. I can feed him, as they let me do that when I visit. We have no other family to help, but good neighbours who have said they would assist where they could.
     
  5. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    The LA have a duty to you as carer as well as to your husband as a disabled person.

    Approach SS and argue that it would be in your combined best interests if he came home. As things progress a 2½ journey each way at a cost of £15.50 only possible when the buses are running is hardly in either of your best interests.

    If there is a hospice in your area also approach them and ask if they can offer any advice or help, they usually try to help relatives as well as the patient.
     
  6. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    My Mum sounds in a similar way and I made an appointment with her nursing home GP to discuss how things are going to progress. She had been awarded nursing element and due for another chc assessment but the doctor immediately put her on fast track so everything will now be taken care of. Not sure whether this would have happened in any case but it might be worth doing the same and explaining your situation and push for fast track. With you the best of luck x


    Sent from my iPad using Talking Point
     
  7. Sad Scully

    Sad Scully Registered User

    May 25, 2015
    8
    Southampton UK
    Bring him home

    As I promised, an update on my fight to bring Ben home. The social services have been surprisingly prompt in dealing with my request and are arranging a meeting with the appropriate people. I have been warned that my request may be refused if the Doctor opposes it. I had a visit yesterday from an occupational therapist who is lovely and will arrange the bed etc. if I get the go ahead. I am really hoping that all goes well and I would like to thank you all for your advice and support.
     
  8. Padraig

    Padraig Registered User

    Dec 10, 2009
    1,039
    Hereford
    going it alone.

    I don't post much these days as my attitude and experiences of caring for my late wife differs to most. On reflection, the biggest mistake I made was to place my wife in a Nursing Home. At the time she was wheelchair bound and required feeding and washing. The one true statement on TP is : 'We are all different'.

    Visiting the NH each day I found heartbreaking and it did nothing good for either of our healths. The answer was to take her home, no matter what anyone said. By that time she was bedridden with pressure sores, reduced to less than six stones, and stopped eating. None the less I ignored what the doctors said and was not about to pay any more money to the Home.

    Initially we required a rapid response medical team to visit daily, but I insisted on overseeing everything. There were differences of opinions, and these are recorded in the medical diary. As the months passed so did the medical staff with the final entry in the diary. I was happy to care for her on my own 24/7 year on year. Finally after nine months we were left to our own devices and she survived a further four years. As the lady Psychologist remarked; "You proved us all wrong" before she vanished at the start of our final four years.
    This post may not be of much help, but if you wish, you can PM me I will gladly give you a free download copy of my book: 'Alzheimer's Care My Way'. I dashed it off, complete with pictures and copy of the medical diary, in the hope it might help some carers. Please free free to ask any questions.
     
  9. Sad Scully

    Sad Scully Registered User

    May 25, 2015
    8
    Southampton UK
    Dear Padraig,
    Thank you so much for your response and I would be most interested in reading your book. I have found, during this steep learning curve, that the more I can read about other people's experiences helps me to come to terms with what is happening. I have found great sympathy from friends and family, but nobody can understand the pain and grief except someone who has lost their wife or husband to this illness. None of the professionals can possibly understand, unless they have been there, and to date I have not found one who has. I have a dear friend who lost both parents to this disease and when she says 'I know how you feel', I want to scream that although we love our parents dearly, it is not the same as losing your soul mate. I know that nursing homes do the best they can, but in my experience, the physical needs are met but there it ends. My beloved husband is deteriorating so rapidly, I believe because he has no quality of life in a nursing home. I do not know if when I bring him home (if this will be allowed), that it will improve, but I will give it every chance as I believe that love truly can conquer. You have obviously proved that by the love and care that you gave your beloved wife. I'm not sure how to get your book (I must admit, I'm not very computer savvy) so if you can let me know what to do, I would be grateful. Many thanks.
     
  10. Padraig

    Padraig Registered User

    Dec 10, 2009
    1,039
    Hereford
    Hi, Sad Scully,

    I'm not too good with computers either, however when I write PM me, it means: post a personal message in my in box. To save you the bother here is the book:

    https://www.btcloud.bt.com/?shareObject=0b4d7b97-f8b5-976d-fe50-4b722d9ed3f5

    Click on the above to download a copy of 'Alzheimer's Care My Way' it will take a few minuets to download. Good luck with it and if there are any questions you would like to ask, please free. I can well understand when people say 'it is impossible to care 24/7 on one's own, in their own home. In my case I was able because of a very unconventional upbringing.' To discover the love of another human for the first time in my life in my early twenties was an all consuming experience to be shared all the way no matter what.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.