1. 3shirley

    3shirley Registered User

    Nov 28, 2013
    20
    workington
    My husband is 67 been in a nursing home since December he has no mobility can't communicate also his legs are contracted and peg feed I am finding it very difficult to cope how do you deal with the guilt of leaving him after a visit I go every day and when I am at home I think about him lying there on his own I don't even know if he knows who I am
     
  2. katie1

    katie1 Registered User

    Aug 5, 2014
    122
    Kendal Cumbria
    He is in the right place to care for him correctly, he has dedicated experienced nurses, who can assess his needs, move him safely and carry out gastrostomy feeds. You are bound to feel guilty but you cannot offer him the same level of care so you are doing the best you can for him. No one can say for sure if he knows you, just tell him who you are, hold his hand stroke it and talk to him, he might recognise the sound of your voice or feel the emotional connection he has with you even if he cannot 'name' you exactly.
    Maybe there are things you can do for him such as a gentle hand and arm massage, leg massage? (ask OT and physic) play his favourite music, read to him maybe.
    Perhaps ring and ask before your go if there is something you can do that day, to be involved. That way you will know you are part of his care and are active, it might take away some of the guilt and you might feel more part of the team around him.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    You have no need to feel guilt for a condition which cannot be cured and you didn't cause. On the contrary you are loyal and caring and doing all you can under the circumstances. Dont punish yourself by feeling bad unreasonably.
     
  4. sheila55

    sheila55 Registered User

    Feb 6, 2014
    52
    If you spoke to other people in your position you would probably find they all feel the same. In the early days of Mum going into care I used to find some comfort in knowing that we had no option but to have her in care for her own safety. Also knowing that you are not alone in feeling this way can help. Mum's home has regular relatives meetings and I find it useful to chat to others and hear how they are feeling about things. I found things got easier over time and I hope they do for you too.
     
  5. WIFE

    WIFE Registered User

    May 23, 2014
    856
    WEST SUSSEX
    Guilt - the normal emotion to feel when someone you have shared your life with for years - through no fault of his or yours is placed "in care" but how about taking comfort from being able to visit him regularly, still talk to him, share past memories even if he appears not to understand what you are saying, take on some of his daily care if possible. I did it for ten months last year and sometimes felt so guilty but what was the use. It was the card my husband and I had been dealt so I just got on with it as best I could. Nothing was, or ever will be the same again but I have good memories of my time at the NH with my lovely man even at the end of his journey. Loving thoughts WIFE
     
  6. 3shirley

    3shirley Registered User

    Nov 28, 2013
    20
    workington
    Thanks for all off your reply and advice on how to deal with my situation not easy when I am dealing with it on my own but as wife said it's the cards we have been dealt so I'll deal with it to the best I can love to you all xx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,885
    Kent
    Hello shirley

    No need for guilt. You might feel guilty if you left your husband in residential care and abandoned all support and care but certainly not as you are and as you do.

    From what you say of his condition, there is no way you could look after him single handedly at home. I`m sure with the best will in the world care at home would not be as good as residential care with your support.

    You are in a painful situation and it seems to me you are making the best of it and the most of your husband.
     
  8. catbells

    catbells Registered User

    Jun 14, 2010
    384
    Cambridgeshire
    Hello 3shirley. We all deal with these situations in our way, but please try to look at it positively. Love is letting go too. We have let go of the care of our loved ones to those carers who are best to look after them. They are not emotionally involved as we are.
    Ask yourself, could I coped with him at home? Would I be making myself ill if he was at home? I found eventually that I was actually having more quality time with Mum, leaving carers to care for her physical needs. I was fortunate I visited every day, and worked with the carers on her care plans etc, I shared the responsibility of her care with them, and to the last few days I took all decisions following discussions with GPs etc, I couldn`t allow carers alone to make decisions. I also belief the sooner we accept a situation the earlier we can move on -that is be positive. Relatives suffer more than the patients. Just talk things through with yourself, we quite often have the answers ourselves but just need to bring it forth. This is a disease that we not only have no control over but one we cannot reason with. Dementia is an intriguing condition if it wasn`t so tragic, so please don`t beat yourself up. Let the tears flow, its good to do this otherwise you make yourself ill. Treat yourself to a little something each day. I know its hard when they don`t know you, but I found that Mum treated everyone the same as me-I wasn`t special to her anymore -yes I was upset by this, but again turned into a positive, it actually helped me, if she was happy without me, then this was good for her - then I felt happier at leaving her and especially when going on holiday with my family. It took some of struggle to come to terms off me. She was still Mum to me, we remained very tactile to the last. I think she knew deep down I was special (carers kept telling me she recognised something in me, but couldn`t express it) but I wasn`t always convinced. She had a happy demeanour, so our time was spent with hugs, kisses and some lovely back scratches, and giggles (speech lost - but she could still make a noise)So I have now a pocket full of happier memories of "walking the path with her" and although it is only 3 months since her passing, the positive experience is still uppermost in my memory, and any negatives I quickly file away in bin13 in my head.
    I hope this helps you.
    Take care
    Heatherx:)
     
  9. count2ten

    count2ten Registered User

    Dec 13, 2013
    186

    Such a lovely positive post Catbells - I am starting on this journey now, learning to l let go and able to feel happy when I know my mother is happy, and that's enough for me now, I've finally learned to live in her world and no longer go down the exhausting and distressing route of trying to get her to live in my world. If only I had known this 2 years ago - but we got through it, together somehow, we are still mother and daughter and nothing will every change that or come between us. I know she would understand (if she still could) that I did what I thought was best for her, as she would have done for me (and no doubt did when I was little and the roles were reversed). My only regret is that I wish we could have had a closer and more intimate relationship over the years, but she had her fears and motivations and all I feel now is love and respect for the woman who tried her best in difficult circumstances and gave me the values and principles I have now passed on to my own children. One result of this awful disease is that my mother has lost most of her inhibitions and anxieties, she talks a lot about her childhood (which is where she lives now in her mind) and she has become very loving and tactile with me, something she always had difficulty with and used to frustrate me so much. If any good can be said to come out of this awful disease I think I have finally got the mother I always wanted, warm, loving and able to let her emotions show,.
     
  10. catbells

    catbells Registered User

    Jun 14, 2010
    384
    Cambridgeshire
    Hi count2ten. Well done. I`m so glad you have been able to adjust, accept and find the peace and relationship you wished for. I think we need to go through the greiving, distressing at the lower ebb times before we can come back up. We are frightened and feel out of control. Making decisions without having to pass it by our loved ones. They say life only deals out what you can deal with, unfortunately it doesn`t happen overnight so we struggle on.
    I am now looking at putting something back, passing on my experience to others and signing up for the Dementia Champion Course so that I can go out and spread the word which simply is "go with the flow" -It`s not about US it`s about THEM. so looking at the community and how we can support carers/shop keepers etc to understand. There is no place for reasoning with this disease - "go with the flow" and deal with the aftermath later. Mum used to display out of character behaviour - shop lift at the local shops. They were aware, so I would pop in and pay for whatever she took without compromising her dignity,I will also when I`m ready be returning to the home where she lived for 3 1/2yrs to visit those residents I know don`t have many if any visitors. If we look deep enough there is always a positive with a negative, it just takes us time to discover it.
    Best wishes
    Heather x:)


     
  11. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    #11 count2ten, Jun 2, 2015
    Last edited: Jun 4, 2015
    Thanks for the reply Heather, go with the flow is a good mantra for everyone. I have caught up with some of your previous posts and I wasn't aware of how recent your own loss is and I would like to add my condolences to the others posted here and hope you are keeping well. Your account of your mum's passing was very moving but as always very positive. I must admit to not being as brave as I need to be at times, still apprehensive of the future and what it holds. I seem to cry more these days - not sure why, maybe I need to get back to work or something - everyone told me it would be easier once she was "in a home" - I think everyone had their own agenda about this - but I always knew it would be harder to let go emotionally, that's probably why the tears. But even if I still can't fully relax , mobile phone welded to my side, at least I'm not so scared any more because I think you learn to expect the unexpected.
     

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