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 contributed for some while as I've been busy settling Jim into full time care. Jim (59) was taken into hospital on Maundy Thusrday after the last review meeting as he had deteriorated considerably, this was for assessment and a trial off the aricept as it seemed to be no longer working. He spent 6 weeks there and during that time my daughter fought long and hard for a place in a specialist young dementia home she had found in Manchester. We did not want him to end up in an elderly persons home. This unit, when we found it seemed to be the answer to the prayers we had had about Jim having to go into care. We visited several times (not with Jim though) and it seemed ideal and the staff are lovely. They offered us a place and then the battle for funding began. Thank god for my daughter who put her legally qualified head on did lots of research and got a place from continuous care funding. Without her we would not have this place, as by this time I had been signed off work with exhaustion and have no fight left in me. I think as a family we have been very lucky not only to get the place but to have such fantastic support from both Jim's consultant and CPN they have been wonderful.
    Jim moved in last week from the hospital to the home. He has deteriorated even more and it breaks my heart to see him now looking so ill and helpless. The home are doing a wonderful job to get him settled, he is being well cared for, he is with peers of his own age, infact he is one of the older residents and his environment is lovely. Where does all this leave me after 5 years of daily dealings with Alzheimers and 30 years of marriage? Totally lost, exhausted, guilty and wondering how to come to terms with the virtual loss of my husband at 54 and wondering what to do with the rest of my life!! I try to visit as often as I can yet I come away in tears, I try to keep myself as busy as I can yet have little motivation for anything. This must be the cruelest of illnesses to have to deal with. Where do I go from here?
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    First of all, such huge congratulations for having organised the continuing care funding!

    One wonders how many people are not getting it, when they might be able to. Certainly I couldn't have managed without this funding for my wife Jan.

    First point: it will take maybe even as much as a year for the unit to stabilise Jim, physically and on medication. My Jan seemed to be much worse after going to her home, but after a year she was hugely improved, physically. Mentally, there are always going to be relative ups and downs in a generally downward path. No point in trying to avoid that one. But nearly three years after going into her home, I feel relatively at rest about her condition now; I have come to terms with it, but still maintain an active caring role with my visits. The key thing for the carer is not to feel they have abandoned their loved one.

    Your situation is very similar to my own, so I understand.

    Regarding the rest of your life - do you have children?

    I'm not sure that is relevant actually, but they would provide additional support for you.

    When you have been married for over 30 years, the thought of being alone is appalling, coupled with the feeling that you have been trashed by the process of the illness; that to start a new life would in some way be to invalidate your life with Jim; that you have to await Jim's death [sorry, but that is the only way it can be put] before starting any new form of relationship; that no-one would want you anyway. All of this sort of thinking with Jan drove me near to madness.

    You need time, frankly.

    Time to adjust to Jim's new situation; time to see his settlement in the unit; time to adjust to not doing the caring all the time.

    After that, just let things take their course. Don't set huge expectations, but likewise, don't expect the rest of your life to be dreadful.

    In my case, I still love Jan, of course, and I visit almost every day.

    We have our past together, and that will always be there. We have our present together - a different one from normal couples of course, but we have our shared moments of smiling, clarity etc, and they are so important.

    But since last year, I have a future; I have a new partner who does not prejudice what I need to do for Jan, and who not only understands, but also visits her with me. [in my case it helps that they were both best friends when I first met Jan, just under 40 years ago] Jan was my first and, until last year, my only love. I thought I could never experience the same feelings again. I was wrong. This time is very different; just as intense but no less valid than the first time with Jan, and it has, as a side effect, made me much more able to be of value to Jan when I am with her, as I am brighter in spirit.

    I remember some years ago that my Mum commented when she heard that Iris Murdoch's husband had found someone else - she said "he couldn't have loved Iris much, then'. This is so incorrect, but our situation is something that only we can truly comprehend.

    You will not be disloyal to Jim if you - at some time in the future - find someone else. Even if he is still in the unit. You may not believe this now, but let time take its course.

    Please keep talking on this forum. These are critical matters for all of us, and the subject of where to go from here is one that is rarely surfaced.
     
  3. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    thanks for the message

    thanks for kind words & thoughts Brucie. I have two daughters who have kept me going throughout the whole time. They both live away from home now, one married, one with partner but they call me daily and when dad was at home they made frequent long treks home to help. Elder one is a lawyer and without her we certainly would not have got the funding she fought a tough professional battle & did not give up. I know it will take time for Jim to settle and I know only to well it's a downhill struggle but if he can have some dignity, contentment and calm in the remaining years then the move will be worth it and if I can develop a new life of whatever with out feeling guilty then that is all I ask. I feel no one can live through the alzheimer experience without being changed, my priorities are changed certainly but I do still have expectations I just don't know what they are at present. In the short term I need to build up my energies and get back to work and I need to keep busy to fill the void of being alone in a large house.
    Does one ever stop looking at their partner and weeping openly or internally at how sad and destructive this illnes is? Every time I look at Jim I see the man I married, the super dad, the busy business man, the entertaining host, the eager magistrate and many other facets of his personality and then I see this sad man shuffling around in total confusion about everything in his life. It does hurt and I hope the hurt dimishes with time. (can't see the dam keys now for tears!!)
    Thanks for this site where we can express thoughts to those who understand and thanks to you brucie for your numerous contributions to help everyone
     
  4. Jacky

    Jacky Registered User

    May 20, 2004
    4
    Worcestershire
    hello carol?
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    During the time just before Jan went into her final assessment, and thence into full time care, I was looking after her day and night. I was still employed but my company was excellent, and they paid me although they must have known I was doing precious little work of theirs.

    When Jan went into care, I returned to work full time, albeit with somewhat bizarre hours, and the people there were fundamental to my getting back to some sort of normal condition.

    We carers do what we do and there is no time to think that it is anything that anyone else would not do. I found so many people at work who told me they were amazed at the amount of care I had provided for Jan; who said they could not have done it [that is something they will only know for sure if they are unlucky enough to be affected - it is amazing what inner strengths one can find when push comes to shove].

    Their saying these things made me realise that the whole thing was not a negative process, and that it was/is worth my doing whatever I must do. Part of the positive slant is that one wants to learn from, and help others in a similar situation - it is a sort of legacy from Jan, to my mind, and I see her [not me] helping other people. She gives me the strength.

    Getting back to the work thing, the personal contact is important, at least at first. You have to feel more a part of a wider society.

    Oh, and no, you never do stop grieving for the loss of the person. You will probably find that you become less openly affected as time goes by, but that the feelings are still the same. Jan was a classically-trained pianist, and I well up every time I hear certain pieces of music that she would play, Rachmaninov, Handel, Elgar, Beethoven, Bach, Vivaldi, Simon & Garfunkel ['Bridge over Troubled Waters' was hers!]

    When you have been together with someone for a long time, you will have done so many things together. Frequently you will realise that for the first time in ages you are doing something you last did with your partner, and it will take you unawares.

    This week I'm on a scaffold tower, painting the 11' ceiling of our lounge. Last time I did that, Jan was in good health and was helping me. [you may gather from this that I don't decorate very often! ;-) ]
     
  6. C.Waring

    C.Waring Registered User

    Feb 6, 2004
    21
    Lancashire(East)
    Piano's

    Just read your reply Brucie and it was so eerie-- Jim was also a fantastic pianist and Bridge over troubled water was one of his favourites, when he used to play it used to make a shiver run up my spine, now when I hear it I have a weep. Les Miserables was one of his other favourites. Me today well I'm keeping busy with over 400 science exam papers to mark - should help me focus my mind a bit. Carole
     

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