1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    The GP put it very plainly to me in the early days - I have two ways out of this situation - either I up and leave my OH, or one of us dies...... says it all really
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,543
    Oh dear I feel like this too but he's my dad and hopefully I will outlive him. If it was my husband it would be a whole different kettle of fish. I don't think I could do it, not after looking after dad.
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    You would I am sure, it would be different, extremely painful but love cracks in and keeps us struggling on.
    Just don't think about it. Leave tomorrow for tomorrow.
     
  4. PalSal

    PalSal Registered User

    @maryjoan
    Love your directness..........
    ''The GP put it very plainly to me in the early days - I have two ways out of this situation - either I up and leave my OH, or one of us dies...... says it all really''

    I have chosen to stay these 16 years (so far, and continuing) of our long goodbye. Sometimes, I have questioned that decision for myself. But I do not question what others choose to do. I have a friend, who had a very nasty husband who was diagnosed. She tried caring for him for a bit, with no help from his two sons. He was nasty before he was diagnosed (would not allow her teenage children to the live with them, and she was not allowed to help them financially) After a bit of time , she divorced him. It was the right decision for her.

    I think that if the shoe were on the other foot, my hubby would be here for me, I think. And in all honestly, I want the respect and love of our children, who have felt very strongly that I should take care of their father. So, I am doing my best one day at a time. My children have been very helpful and active participants in their father's care, so I am very lucky.

    But I am completely with you, Maryjoan, it is a big question which one of us will outlive the other. My husband is physically very fit, it is the Alzheimer’s which is slowly robbing him. But even in his fitness, he is starting to be quite slow....because his mind (central nervous system) no longer functions his balance is starting to fail, and other involuntary functions will eventually go.

    I guess I always have difficulty on Talking Point, with folks who have not yet accepted that death (and in many cases, not an easy death) is the final stage of this long process. But I should not be so harsh. I have had a long time to come to terms with Alzheimer’s, and everyone is at a different stage in the process. I gave up hope for a cure in his lifetime long ago. I just hope that there will be hope for the next generation, our children.

    As I have said many times here, my husband has a full and clear medical directive which will only provide him with easing any physical pain. There is no intention to be taken, for any illness or ailment, just pain relief. But I know I will have to fight for his wishes, as the medical profession (our two daughters) are trained to believe in healing and curing disease and injury. But I believe my children have accepted his wishes and will help me in the end to support those wishes. My husband was an active, physical man, he would not want to be lying in a bed for a long time, his body dying slowly. But in the end that may be our story, but I hope not for his sake. I hope to God, for some mercy at the end of his life.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,542
    Kent
    Some posts have been moved away from this Thread for Administration
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    I feel apart from the gruelling process of caring, the love that bounced like a ball between us now seems one way. Like batting against a wall, I am doing the work with no surprise returns.
    But beyond that there is the deeper question of mortality.
    Our general plan was to share everything, one pot, one love.
    Enough over to share. When I produced children, the wonder!
    My husband expected to be provider, I did work as a partner, my earnings just went into our pot.
    We always consulted.
    We planned if one survived the other was provided for.

    My mortality has always been in the background but that is another story.
    We expected each other to cope, because our shared love strengthens us.
    Now it is a whole different ball game.
    My love would not cope now, he needs me.
    My own health issues remain.
    So back to the question that modern societies just do not deal with very well.
    One of us will die first.
    Last year when waiting on a call from hospital, the depth of my grief took me.
    I buried into a pillow so no one would hear.

    My hopes for a day centre have morphed into that for now and possibly a future home if needed.
    I do feel much of my pain is when I imagine there is a Plan A that will work.
    The future is uncertain, but it always has been,
    I tip when I lean to far forward into the future, or like a spoilt child into the past.

    I cope better when I tackle this situation as a 'job' for the practical chores.
    A non attachment. I suppose a 'not expecting'.
    Love has been stretched in ways I had not foreseen.
    I have become so defensive, so protective.
    It is wearing, tiring and stressful.
    But we are surviving, we smile and hold hands.
    We remind each other of the things we did and how we do not cope with such things now.
    I grieve for him.
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    I hope to God for both of us, xxx
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    Very beautifully put, and very, very moving. I wish it was the same for us.
    But it isn't
    We are not that long into our relationship, only 8 years, and it is not a relationship and has not been for quite a long time........

    He enjoys Dad's Army on TV - I have ordered a book about Dad's Army from the National Archives, as a little something for Christmas - it has just arrived, and as I looked through it, I realised it was too complicated for him to read - I will find someone else to give it to for Christmas.......... this flaming disease is always one step ahead of me..........
     
  9. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Hi All:

    My tipping point is holiday music & all holidays (Christmas, birthdays, anniversaries etc.). It starts there and has a snowballing effect, by the end of the day my nerves get frazzled if he drinks orange juice out of the carton & doesn't use a glass.
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    You are right about it being one step ahead! It is so unpredictable.
    Yes, I do feel the length of relationship makes a diffence, it must do.
    Past memories help build a foundation.
    It seems like we are dealing with childhood in reverse, easier to grow into things than keep growing out of them.
    It is a shame about the book.
    My husband likes looking at art books, we studied History of Art. How much is remembered is doubtful.
    The photos are lovely though.
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,404

    When I was first married I found seeing dancers upsetting, I married a non dancer. It was such a pang.
    It took many a year and silent tear to get over it! A dance on my own was just not the same!
    Problem is a tipping point can catch unawares!
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,848
    Female
    Scotland
    @AliceA odd you should mention dancing. John and I met at a dance and it was the first sign that we were right for each other. A good fit and compatible.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    Mine had two left feet but still compatible! Once we had lessons, he pushed in the cha cha
    cha when he should have pulled. Then gave me a black look! It was so funny!
    a wonder I did not go over!
     
  14. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    I studied the History of Art - and my visit to the Ashmolean was all the better for it.

    My Tipping Point today???? trying to convince myself that my role here is as a housekeeper/carer - a live in job - because there is no way we are companions any more - if I could convince myself that was my job, my brain might be happier with all this....
     
  15. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    244
    Central Scotland
    But if you were a paid housekeeper/carer then you would have terms and conditions. You would do your 7 or 8 hour shift 5 days a week with two days off, bank holidays or time in lieu 5 weeks at least of paid holidays. There would be fellow workers to cover if you were ill, or with whom you could discuss any difficulties. You would not be expected to tackle tax returns, benefit claims, tax, insure, maintain and drive the car, pay the bills, etc. etc., .take sole charge of buying and sending cards and presents, arrange and accompany to appointments, nor take the cared for person with you if YOU have an appointment.

    If an unrelated person were forced to take on this 24/7 role we would call it slavery.
     
  16. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    You are absolutely correct. It's a lousy job, isn't it? And that is why the successive Governments let us do it. Because us carers have a thing called 'emotion' towards the cared for, the Govt get away with treating us as they do.

    I am trying, in my own head, to separate this person I live with from the person I fell in love with 8 years ago. It is monumentally difficult and heartbreaking. I think the only way I can let the emotions 'go' a bit is to pretend I am a housekeeper/carer. Does that make any sense at all?

    I have been trying, and failing, for almost 2 years to treat him as though he is still my OH. I am still me, but he isn't still him. Is it because I am analytical, logical, in my erstwhile career as a genealogist? I think it is. I am looking for answers that are not there, and that is very stressful.

    and this is the only way I can think of to tackle it........ I would appreciate it if anyone has a better way I could try........
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    355
    Male
    Devon
    I’ve come across some documents I need to deal with, stuff that we did together 8 years ago when everything was ‘normal’ but trying to explain what it involves is hopeless. My wife won’t remember tomorrow anyway. We’re on our own, completely and not in a good way. You’re right that the carer role is thankless and without the independence and freedom you need to accomplish most tasks outside the home without your OH interfering it wears you down. I wish I could cope marvellously like some do but I’m too immersed in it all and just want escapism most of the time. This leaves little space for strategies, bright ideas, innovative thinking, all that stuff that we’re supposed to do to help our dementia sufferer.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,404
    It makes sense to me, we all have to find ways of coping. When I have to tackle something I do not like I do think how would I approach this IF I were paid. Dusting books for example, paid I would dust them impersonally unpaid I would want to read them! Caring is a little bit the same, seeing the man I love struggle is heartbreaking, stepping back a little from MY emotional response helps me cope with his.
    It does not work when tired though! Or when I need love. It is just a tool.
     
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    I do feel for you. There are so many variables to this disease that no one can ever get an angle on all of it. We all end up puddling around in our own pond, usually sadly, alone.

    Stay on here, keep posting, we all, literally, support each other........
     
  20. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,313
    Female
    South of the Border
    I am right on the edge of the Tipping Point today

    Whatever part of my life I am looking at today, there is a problem that I cannot solve.

    Everything has imploded and I am really fed up with it all - The Doctor, Social Services, the lady I went to for counselling - no one can see a way forward for me..........

    just one small problem is our new care agency, whom we thought would be good - has just changed hands. Yesterday the carer was over an hour late, and looked completely shattered when she got here - didn't know why she was here, or what for, and had spent a full hour looking for us - even with a satnav Really?? we are not that hard to find.

    I had to send her away after she had travelled about 20 miles looking for us - because she simply was not stoma trained. It is now 45 mins since todays carer was due..........

    tomorrow is another day........
     

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