Does the guilt ever stop?

Discussion in 'I have a partner with dementia' started by Suzy C, Sep 17, 2019.

  1. 65Maisie

    65Maisie New member

    Mar 14, 2019
    9
    I’ve been living with the guilt for 4 years, we had to put mum in a care home she has vascular dementia and my dad had Alzheimer’s and was putting her in danger by keeping her at home. He never forgave
    Me. He believed he was the only one that could care for mum. In the last year she was at home she spent 2 months at home. The rest of the time in hospital with either falls or infection. The social workers stepped in. But I had to
    agree as POA!
    Since then it never got any better mum wanted to go home. But last November my dad sat an watched across the road as his house burned down. Apparently he had no idea what to do. He had an emergency pendant but didn’t press it.
    He had a month in hospital then moved into a lovely care home that he hated.mums home wouldn’t take him. It became apparent how bad his Alzheimer’s was once out of his own home. After breaking his hip in March he just gave u and said he was going to kill himself , he’d told me this so many times if he didn’t get his own way. It was horrible. I felt guilty for not standing up to him and doing more to deal with his life long stubbornness. Even near the end the staff would say he doesn’t really seem to have to bad Alzheimer’s. Until I said everything he’s just told you is totally mad up rubbish! He staved himself to death and passed away in April.
    Now my mum can never go home even if she could do anything for herself. She wants to go home and there’s nothing I can do to make that happen. I cry for her for my dad for my lost family home , and for my mum’s lost memories as she gets further away everyday! So no I can’t say the guilt will ever go away because I don’t think it will.
     
  2. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    Oh my goodness what a heartbreaking time you have had trying to do the best for your parents. I hope you find some peace with all this eventually. I wonder and hope someone is looking after you through all this. Getting old sucks doesn't it?
     
  3. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    Dear Catherine, how awful you had to cope with all that on your own and it seems the uncertainty goes on for you. I find the days when my husband knows me and where he is much harder than the days when he is away with the fairies, though they are upsetting too at least then he is not pleading with me to take him home. Good luck
     
  4. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    It really is so hard isn't it to accept we did the best we could in the circumstances and that we are only human. I wish you some peace with it all.
     
  5. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    254
    My husband has been in a home now for 15 months and for the first six to 9 months I suffered dreadfully from the guilt every day of having had to leave him there and not take him home when I could no longer look after him properly. But as the disease progressed so much further my common sense finally won over and the guilt faded. I’m not saying that I don’t still sob as I drive away when I’ve been to see him sometimes because I hate leaving him and miss having him with me but I do know that he is in the best place for his own welfare and I did do the best for him by finding him a safe environment .
     
  6. ashtreex

    ashtreex Registered User

    Dec 16, 2018
    12
    Female
    London
     
  7. ashtreex

    ashtreex Registered User

    Dec 16, 2018
    12
    Female
    London
    I was recommended a book, "Contented Dementia", Oliver James, which gives really good advice on communicating with and managing someone with dementia. He strongly recommends that a care home is a good thing and actually much better for the person as they appreciate the company of others in the same state, as well as the safety concerns. He also has a detailed strategy for helping the person feel content and peaceful. Although my OH is still in the quite early stage I am already making use of a lot of the advice. James is absolutely clear that you shouldn't feel guilty about moving your husband into a care home. Hope this helps.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Oh @65Maisie , what a horrible set of circumstances. None of what happened was your fault, though.
    (((((((((((((((((((((((((((((hugs))))))))))))))))))))))

    There is just one thing that I would like to say that may help you a little. You said that your dad starved himself to death and I would like to say that when people with dementia pass away this stopping eating and drinking is normal, but they are not starving to death. What happens is the body shuts down slowly over days and weeks and they do not require food and drink anymore. They do not die because they stop eating and drinking - they are already dying and this is the reason they stop eating and drinking
     
  9. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    Thank you i do have this book but read it a while back. I shall revisit it.
     
  10. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    Thank you for your kind response. I am glad the sobbing I do on the way home is normal for most.
     
  11. Radar53

    Radar53 Registered User

    It is difficult this emotion of guilt. My dad has been in care home since june. I still find it hard to leave him.
     
  12. Tickival

    Tickival Registered User

    Jul 20, 2016
    3
    Hello Suzy C, just had to reply to your post, my husband has now been in a nursing home for six months, which has been the hardest thing l have every had to do. So l feel for you deeply as l know how you must be feeling, but it does get easier, and when you get to know the people who are caring for your husband everything will feel a lot better. I have met some lovely caring people on this horrible journey and l thank God for them. But the guilt does still remain with me, although like you l could not have gone on much longer. I shall be thinking of you, and hope your days improve.xx
     
  13. lis66

    lis66 Registered User

    Aug 7, 2015
    272
    65Maisie sending((((((())))))) to you truly heartbreaking xxx
     
  14. Jmhort

    Jmhort Registered User

    May 13, 2016
    5
    My wife has just lost her mobilty and we also promised each other never to put them in a care home and, true to my word, I intend to keep my promise. I will be 75 in January and not quite as strong as I used to be and although my wife only weighs about nine stone she is very difficult to lift. In order to continue managing at home, I have just had two hoists installed in the ceilings of our bungalow at a cost of just over 2k. They have transformed how I now manage my wife on a day to day routine and it is so easy. A little fiddly at first but you soon get into the routine and, I believe, the cost could be offset via the occupational therapist route. I wish you all the best going forward with your husband but do hope you may consider different ways of coping. I know it is sad and we love them very much, you have managed for eight years it would be a shame to give up now both for your overwhelming feeling of guilt and for the short time your husband may have left. My wife cannot express her wishes or feelings as she has lost all power of speech and communication ability but, I am determined to carry on for as long as it takes.
     
  15. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    Thank you for your kind message, that's good to know x
     
  16. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    23
    I am glad the hoist worked well for you. My husband still had some movement which meant he would not sit still and I couldn't watch him all the time. Plus he was beginning not to know me and was very verbal with constant questions and getting aggressive. I could not have coped with it all for much longer. I wish you luck.
     
  17. Lirene

    Lirene Registered User

    Sep 15, 2019
    105
    The more my husband belittles me and shouts even in front of others, and says the most horrid things - how I embarrass myself in front if people, how I have numerous boyfriends, going to seedy nightclubs, I want a divorce, I’m not looking after him or the dog properly etc,. He goes on and on. It goes through my mind trying to recall if I’ve done anything. that maybe he’s right and it’s me and then I take a deep breath and tell myself over and over that it’s all in his mind but why do I still feel guilty? I have done nothing but love and take care of him and do my best but the agony and guilt never goes away.
     

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