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 not been in touch for a while, we have had a dreadfulfortnight when the dreaded day arrived and Jim has gone onto the dementia ward in the local hosp. I just feel so very sad as I know he won,t be home again. He is angry sad & very confused, I feel sure he is fleetingly aware of what has happened to him and he is scared and unhappy. Myself I feel life has reached a crisis, I know I can't manage anymore even if I gave up work which is not an option. I also can't bear the prospect of living alone and keep visiting someone so sad. Will I ever feel bright again and will life ever feel ok again or does the guilt despair and sadness ever lift. Any ideas on coping? Carole
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Carole.

    Anyone who has not been through this can give you lots of advice, platitudes, and you may find - as I did - that it is a load of tosh, well-meaning tosh, but grade A gold-plated tosh, nonetheless.

    There's only one thing worse than the personal pain and fear at this time, and that is the knowledge that the loved one will always be in a worse position, and one of huge vulnerability.

    That knowledge is what helped me through the initial period. No matter how good the care at a hospital or home, I knew I had to be there as much as possible, to share Jan's pain and confusion, and to make the new carers aware that we expected a very high level of care for her.

    I also knew that much of what I was doing was as much for me as it was for Jan because at that stage, when one has been caring for someone at home, that has become the main reason for being. The loss of that 'burden' [never a true burden of course, as one does it willingly for the patient, but against one's will for the disease] leaves the carer rudderless for quite a time.

    I did my best to help Jan accept that her new life was as normal as possible; I still do, three years later. It has also become part of my new life, though there is a new part of my life where there is hope for me for the future.

    Let's look at the immediate future for you.

    Jim WILL be scared and confused, but the fear should pass slowly as a new routine becomes the norm. Much of the fear is of the unknown, and that is not only the case for the patient. You too must learn a new routine. You must also come to terms with his not being at home - this is not even slightly easy. For the first six months I had pictures of Jan in every room, so she was always with me. I'd talk to her a lot.

    His confusion will remain, as that is the nature of the disease, but even that will reduce over time. It is the mixture of fear and confusion that is the worst. Once the fear goes, the confusion is easier to handle.

    I found that work afforded me time where I would concentrate to take my mind away from the pain, and it sometimes worked. I found my colleagues were immensely helpful and they gave me plenty of leeway for being a difficult person to work with, yet they never complained. Work is never the same again, of course, and three years after I returned there after having cared for Jan at home 24 hours a day for 6 months of her worst times, I am stopping work. Depends what level you are at in your job, but I found that I have been unwilling to play the silly games that are needed in business these days, having been through losing a wife to Alzheimer's.

    Visits won't always be sad. Try to make them brief moments of joy to both of you. At this stage this will sound impossible, but you may find, as I did, that getting Jan to crack a smile has become more valuable than winning the Lottery. [though I'd not say no to that]

    I have found that taking in little picnics of food that Jan really likes is a major help to both of us. Praise be for Mr Kipling's Country Slices, Thornton's Continental chocolates, and Fanta Orange. I still cook her favourite desserts for her.

    Guilt, despair and sadness will always remain, but at a more muted level.

    I went through a period where I stopped eating and lost a lot of weight [and everyone said I was underweight normally!], and I lost the will and ability to smile.

    I always said to myself that there was only one thing that could save me after losing Jan, and that was something that would be impossible, because I had loved her so much. That thing was love, hair of the dog, so to speak.

    Well, the impossible does happen. It could only have happened in a way that would not prejudice Jan's needs. But it has happened and now I have a future.

    On the forums we don't speak much about what happens after, and I've tended in my messages to omit things beyond the experiences and needs of caring for Jan and myself, but the worry is always there: "what will I do? After he/she has gone into care. After he/she has gone."

    Perhaps we should share experiences about that, too.

    In the meantime, take things an hour at a time. Things won't be quite as bad as time goes on.
     

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