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Does the guilt ever stop?

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

  1. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    My husband has been in a care home for 9 weeks now. I am wondering if he or I will ever adjust? After 45 years together and promising him I would never put him in a home I have been forced to do so because I can no longer cope. I struggled with him at home for 8 years. if it hadn't been for the falling and the fact i couldn't lift him anymore I think he would still be at home. But the guilt is enormous. There is no relief that he is now in a home. The dementia unit is horrible but all the good homes are full. He always wants to come with me when I leave. I hate leaving him there. I wonder if I will ever leave him there and not be upset on the way home? If you have been in this position tell me if it improves or just stays the same.
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    I used to cry after every time I visited my Dad. I still get upset but I don’t break down in the car now.
    X
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,056
    Yorkshire
    hello @Suzy C
    a warm welcome to DTP
    it's a tough decision to make for someone else and changes both lives, so not surprising that so many emotions well up ... possibly made harder because of your promise and that you don't like where your husband now is

    it's still early days for you; 9 weeks after so many years ...it will take time to settle into different routines, get to know the staff and trust that they are caring for your husband

    I found with dad that it was when I knew the staff had his best interests at heart and were getting to know him as a person not merely a 'resident' that I began to relax a little .... and my mind settled as I grew used to the ways of his new home and the folk there

    as to your promise ... none of us understand at the outset how very challenging caring for someone full time can become ... yes, it would be ideal if we all could have kept our loved one living at home ... what we actually do is stand by them for all the time they are with us and make sure they have the best care that is possible, accepting, sadly, that this may mean residential care and having a team of others to support us ... it's not letting the person down, it's facing up to practicalities .... the guilt comes becaise we care and wish it all could be different .. it's one of those ridiculous emotions we feel even though we know we are doing what has to be done

    when you leave your husband, maybe be sure he has a distraction eg time for a meal, and rather than any fond farewells, just say you are popping to the shops or the loo and 'see you later/in a while' so he has no trigger to become anxious ... and don't let him see you putting on a coat (maybe even leave is out of sight, though somewhere safe)

    allow yourself time, and keep posting, it can help to share
     
  4. PatAnn

    PatAnn Registered User

    Mar 6, 2019
    15
     
  5. PatAnn

    PatAnn Registered User

    Mar 6, 2019
    15
    I have not come to that stage yet and we have also been together 45 years but when my husband was first diagnosed 3 years ago I also made him a promise but we had both seen the effects of the illness on the person and their carers andbi told him that I would always look after him at home until it became physically impossible for me to do so please take each day as it comes and try to give your self some peace xx
     
  6. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    Thank you, the leaving tips are also helpful
     
  7. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    Thank you for your kind words.
     
  8. Locket Love

    Locket Love New member

    Sep 17, 2019
    3
    I can relate to how you are feeling. We have just had to put my Mum into a care home as her Alzheimer's has accelerated. And my Dad has been diagnosed with cancer so he needs to look after himself. But we all feel so guilty. I live 3 hours away from them all so also feel guilty about that. It's such a hard time.
     
  9. Lirene

    Lirene Registered User

    Sep 15, 2019
    32
     
  10. Lirene

    Lirene Registered User

    Sep 15, 2019
    32
    It is human nature to feel guilty. We had to put mum into a nursing home over 11 years ago and I still feel guilty at times now. Over the years she has got gradually worse and now has no idea who we are and cannot string two words together but when the guilt overwhelms me I try to keep occupied and focus my mind elsewhere. I truly don’t think the guilt will ever go but, similar to grief it will get easier. You are actually grieving for someone who is still living. Praying for you xx
     
  11. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    Thank you.
     
  12. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    It sounds like you are dealing with a lot. That must be hard to live 3 hours away. I am lucky at least my husband is not very far.
     
  13. Helly68

    Helly68 Registered User

    Mar 12, 2018
    435
    When leaving, I tend to time this with "tea time" - quite early at my mother's home. She is in and out of sleep so has very little recall. I often say "I am off to have my tea, you are going to have yours soon" - the notion of preparing and eating tea is calming and gets round saying goodbye. I do say when I will next visit, but this is pretty much lost on her now.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Totally empathise, but I still get pleasure from Dads company. Mums settling into a routine & im able to be a daughter a little more now.
     
  15. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    Thank you for your response, I have found that most homes serve the evening meal at 5pm which is ridiculously early. When I tell my husband he is about to have his dinner he says 'aren't we eating together?' However I have taken to saying I will see you soon and leave before he can question me too much the next question always being 'what time'. I say 'soon' as I shoot out the door. it feels dishonest to make up a time and say in half an hour even though I know he won't remember it any way. It is hard isn't it?
     
  16. Helly68

    Helly68 Registered User

    Mar 12, 2018
    435
    It is hard, but you aren't being dishonest. Or at least, honesty doesn't really help. Some care homes do let you eat together (if you pay), especially on special occasions, if you feel this would help.
    I am lucky that Mummy sleeps a lot now, so doesn't always notice or fret that I am going. When more mobile, she always insisted on accompanying me to the door, and hanging around hopefully to see if she could get out. I don't think she wanted to get out as much as see how far she could go to get the staff attention.
    I think the main thing is, whatever you say and do, keep it simple and positive with a calm tone of voice.
     
  17. Suzy C

    Suzy C Registered User

    Sep 16, 2019
    22
    Thank you that makes sense.
     
  18. Janderhol

    Janderhol Registered User

    Aug 27, 2019
    11
    Of course you feel guilty! I do too! My husband of 57 years has been in a Care Home for three weeks. This started off as respite care, but when he was assessed by Mental Health Team they deemed it necessary that he found a permanent place. I knew in my heart that as a 77 year old lady woman that I could no longer manage at home. I am fortunate that the care home is in my area as I don’t drive. Also I’ve had a great deal of financial and emotional support from my children. It’s heartbreaking to have to do this to the person you’ve loved for so long. More fortunate is the fact that I live in a small town and know the some of the carers already. This isn’t a solution to your problem but hopefully you will know you are not alone with your guilt. You must know in heart of hearts that you’ve done all you can. It’s the hardest thing I’ve ever had to do but if my husband had stayed at home I would have gone under before he did.
     
  19. katydid

    katydid Registered User

    Oct 23, 2018
    43
    Hi, I know how you feel my husband of 50 years is now in a care home.
    I knew it had to happen but no the guilt doesn’t stop......
    It was worse in that I had to push it all, make all the phone calls and eventually deliver him there all by myself.
    Social worker impossible to contact, finally gained a bed in the place of my choice, through the tag line ,
    “ Emergency admission for respite with in situ assessment for a permanent stay, due to carer breakdown”
    My husband has been there for 6 weeks now, and I still do,not know if it will be his permanent home or not!
    And no contact in all that time from Social Services,
    The only help has been from Lens community psychiatric nurse, who herself admits she is not fully aware of the social service rules about this, or what happens now!
    In the meantime, I suppose I am lucky in that my husband is becoming further away from Me and from reality.
    He is unaware of the passage of time, I think, I hope, and is so far settled, not asking to come home or even mentioning home. He is still having outbursts of paranoia, and fear, the staff are getting to know him so I hope, I assume they are coping when I am not there
    Some days he is cheerful, and relaxed other days I am the scapegoat, the idiot, the fool etc., as I was when caring for him at home. I just wish I knew what he is really feeling, is he ok? Is distant all the time? Is he as unaware as he sometimes/mostly appears? Or is he frightened, feeling alone, just enduring because I say it’s ok?
    He has always trusted me, so I hope my telling him that’s it’s all ok helps him. I miss him, I hope he doesn’t miss me Catherine
     
  20. LesleyG

    LesleyG Registered User

    Feb 4, 2017
    28
    I dont think the guilt does go away. We just learn to live with it! But, as someone else here has said. In the end we know we have no choice. I kept my parents in a Warden Assisted flat for almost three years with Carers coming in 4 times a day. However, for the last couple of weeks they were there, my Mother went to A&E every week as she was falling all of the time. She needed 24/7 Nursing Care. She always told me she would haunt me if I put her in a home! But, for her own safety and continued care she and my Father went into a Nursing Home. Mum died 6 weeks later. But, I know that I couldn't do any more to help both of my parents live with their difficult needs. Dad is now on his own in the nursing home. And, I hate to think of him there. But, once again, I know its not what anyone would want, but its best for his care at almost 92 with severe Dementia. Its especially difficult as I do not live close by. But I know my Dad is safe and being looked after. And, I have to take some comfort from that.
     

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