1. Josoap

    Josoap New member

    Mar 14, 2018
    My husband was taken to a care home (for respite) as I fell and broke my hip. I thought I would go home, get acclimatised and then my husband would come home. However, this was not to be. They had discovered whilst I was in hospital that I was in fact totally exhausted. My husband is doubly incontinent and I had looked after him alone, cleaning up after "accidents" on my own for three years. It was a complete nightmare. Once the Dementia got worse, as it does, he did not get the body's signals so did not realise he was doing this or which room he was in when it occurred. I alone was constantly trying to keep our home clean and sweet smelling. As I am partially disabled, I was not very successful. The authorities knew this but no help was available so I carried on. I never felt that our home was clean and thought it smelt dreadful so I would not let anyone come in. I have always been friendly and had everyone in but I stopped all this because I felt totally ashamed of my home.
    When I realised he was not coming home because I was told I would not be allowed to look after him, not because of his Dementia but purely because of his double incontinence. I was absolutely devastated. When we married I meant every word of my vows. He was and still is my husband who I love dearly and the fact that we were now not together. I spent many hours in tears.
    However, the home he had been taken to is lovely, he receives excellent care, the carers are lovely, he is very well fed and looked after and apart from the fact that we are apart, I am very satisfied with him being in care. We are now some months in and I gradually came to realise that I was beginning to actually feel like me again, I was picking up the threads of my life again.
    My husband used to pack up his belongings every day to come home and always kept asking me when he was coming home. For quite a while I chickened out of telling him that he wasn't. I said just as I had had a "holiday" in hospital, it was now his turn to have a holiday where he now lived. His Dementia was not that bad and he understood many things. I decided I could not keep this pretence up any longer so the next time he asked when he was coming home, I replied that the powers that be would not let me look after him as it was too much for me. I explained that where he now lived was only 3 miles away from me, I could come to see him as often as I or he wanted and pointed out how he liked the home and how he was looked after much better than I could do it so it was not that bad. I went through all the positives with him asking him if he liked everything that was good and he said he loved being there, he was happy, liked his room and everything, it just was not his home. I reiterated the positives and told him how lucky he is and we see each other so often that it is nearly as good as living together. He gradually became quite happy and settled down, stopped asking about home and stopped packing up his belongings.
    We now have the best of both worlds, he is happy and well cared for but his face lights up like a beacon when he sees me and we can still have lots of kisses and lots of laughs. I feel so much better and so does he. Yes I do of course know he is going to get worse and it won't always be as it is now and I will deal with the bad bits as I have dealt with the good.
    I no longer feel that I have abandoned him and I know that in spite of this nasty cruel illness, we will continue to love each other up to the end.
    I thank God for whoever found the lovely care home, the wonderful caring carers, the cook etc., and everyone who looks after him so well. From being a dreadful struggle, the dreadful frustration and shutting out my friends, spending most days in tears and feeling half dead and guilty, life has changed for the better, even though we are apart.
    I am sure your Mum will come to settle down (packing up every day seems to happen with most of the folk suffering from Dementia at first, but they do settle down), some sooner than others, but they do.
    Chin up and hope your Mum settles soon and hope you can enjoy visiting her and hopefully enjoy her company, find the good memories and remind her of perhaps the silly things you have both done in the past, as well as nice things and places and eventually be able to share a laugh with her whilst you can and do NOT feel guilty, you are doing the right thing both for your Mum and you. You would be no good to her if you kept trying to look after her whist your own health suffers. I know, I have been there and it is not nice or fun.
    Good luck and God Bless.
  2. davidsitges

    davidsitges Registered User

    Apr 26, 2018
    I'm not an expert, of course, just another carer. But I would say definitely not try to explain to the PWA that they are to stay permanently. This would only cause most stress for them. They will forget about home in time but whilst they still remember it, it is best for them to think that it still is their home and they will go back to it. I am in this position and always respond without lying but sometimes being very vague.
  3. BevvyJ

    BevvyJ New member

    Jul 2, 2019
    I am going through exactly the same thing except my Mums career was her husband. Mum has only been in the home for 10days, cries regularly and asks constantly when she is going home and why her husband has put her here. She also feels that the other residents are all crazy although they are no different to Mum. She needs a career 24/7 and has began to become quite aggressive towards her husband which is totally out of character. There is no longer a choice about her remaining at home but it’s been a very traumatic week for Mum and the family. I understand what you are going through but have no answers, only empathy.
  4. Lifebuoy44

    Lifebuoy44 Registered User

    Jun 21, 2014
    Sleaford, Lincs
    Hello Silkiest,
    Thank you for this (very good) advice. Sadly, I wasn't well equipped to handle it and reacted badly. Dammit, I've read so many excellent books ("Still Alice", " Somebody I used to Know", "Contented Dementia", "Elizabeth is Missing", plus some self-improvement books), but I STILL messed up big time. Now I have a seriously hurt 77 year-old wife who hates me.
    Sadly, this is one thing she will probably NEVER forget!!
    I know I'm tired; I know I'm busy; I know I'm human, but I'm her HUSBAND for goodness sake! WHY do I let her throw me off balance so easily? I'm supposed to be the "adult" in our relationship. All too often, I behave like a petulant teenager.
    Is there (in anybody's experience) a way to repair such damage as I have just caused to her vulnerable and fragile mind? How I wish I could turn back this clock!!! Any ideas are urgently needed please?
  5. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016

    You sound as though you love your wife very much. Just keep letting her know you’re there for her - which you will still be even if you eventually need help from a carehome to help you look after her.
  6. Josoap

    Josoap New member

    Mar 14, 2018
    fortune, post 1644773 member 46415
  7. Josoap

    Josoap New member

    Mar 14, 2018
    My husband first went into the care home for respite care when I broke my hip. I was away for 7 weeks and thought that after a week at home to get acclimatised, my husband would be returned home. However this was not to be, as he was doubly incontinent and they said it was too hard for me to cope. I had coped for nearly but they just would not agree and said he could stay there as he was happy and settled which was true. He had to be asked if he wanted to stay and be a permanent resident there. He said at first that he wanted to go home to look after me. I explained to him that "they" would not allow this as I was not fit to care for him. I told him that I was now fine but since my accident had become too frail to do it but pointed out all the good things he loved about the home and that it was only 3 miles away from him, that I could see him as often he and I wished, I could take him out, he loved the food there, he loved the carers who looked after him much better than I could and he loved his room so really he was very lucky. I said it was not exactly what we had planned but I thought it was working well and I thought he had improved (which he had). He agreed with all this and said as long as I was happy and thought it a good idea then he was happy. He then signed the necessary form without a second thought. He has been happy ever since and I see him frequently and can take him out, although of course his Dementia is getting worse so some things will change. He sometimes asks me where I live as he has forgotten but it is to pacify him and keep him on the right track. I have found so far that if I am truthful and only have to tweak it a bit, he is fine. I am very lucky that he has stayed the same gentle loving man he has always been and I pray he is like this until the end. I do hope all goes well, the road Dementia takes us down is not an easy or pleasant one and we have to be strong for our loved ones and let the flood gates open when we get outside. God Bless x
  8. Josoap

    Josoap New member

    Mar 14, 2018
    Helly68, post 1645219 member 72796 Apparently if the person actually has capacity to sign, they are asked to. Social Workers and their nearest family member talk to them about staying where they are presently and they are not asked to sign until everyone concerned knows that the person understands. If the Dementia has no longer got the capacity to sign, then it is whoever has the LPA or the Manageress of the home or whoever is their doctor in the home can sign on their behalf.
  9. Helly68

    Helly68 Registered User

    Mar 12, 2018
    Ah OK, thanks for clarifying
  10. Izumi

    Izumi Registered User

    Apr 25, 2017
    I am sorry to hear the stress it is causing you. It is the most difficult decision to make. After nearly two years of my dad being in a care home only now the guilt is starting to fade. I still cry every time I leave him. In the first few months I used to tell him we were sorting out a time for him to return home. We had only just lost my mum so his life fell apart. He has a DoLs so he can't return home. The only way I can cope with him going in to a care home is, that at any given time of the day, I know he is safe. My dad was no longer safe in his own home - even with four carers a day. If on his own he would leave the house and wedge the front door open so he could get back in when he came home. If he couldn't open the door he would smash it open. If a loved one is in hospital we wouldn't question the reason for them being there. My advice would be to make the room in the care home as familiar as possible with things from home. Try to keep a routine of going to familiar places if possible. The safety of the PWD is the most important. Try (if possible) to find a care home that has quiet space for your mum to go when some of the residents start to ' kick off'. I am still learning... No one prepares you for this.
  11. kindred

    kindred Registered User

    Apr 8, 2018
    All sympathy. I do understand. I volunteer at my husband's nursing home and have had to intervene when one resident tells another that their loved ones are never coming back, or have dumped them. So this happens and no self help book can prepare us for it. What feels like hatred and hurt often passes, really it does, especially when you are there to reassure. As to throwing us off balance, of course they do. Professionals are trained to stay in the adult when faced with moody and adolescent behaviour from people with dementia. Us ordinary folk are not and when someone acts like an adolescent, especially someone we have relied on for company, love and support, it is a shock and it is a normal reaction to behave like a petulant adolescent back. Please, please forgive yourself. We are human and this is an ordeal like none other.
    Wishing you all the best, Kindred.
  12. Dosey

    Dosey Registered User

    Nov 27, 2017
    Hi SoAlone
    I read your post. My OH can't give consent due to lack of capacity. We went to court and obtained guardianship fo 5 years for Health and Wealth for my OH. This allows me to make all decisions on his health, where he lives etc. He moved into a care home on 2nd April this year. We didn't have to sign anything in the home. We do have an appointed Social Work, don't know if she signed as Case Manager.
    Rose x
  13. Trekker

    Trekker Registered User

    Jun 18, 2019
    Dear @Lifebuoy44 I wonder if this might in fact be a delusion, where you OH has a fixed and false belief that someone told her you had dumped her. This is common in PWD. My mother has been distressed recently because she thinks my father wants to divorce her, he doesn’t. Last week she was convinced she had been told her flat was being given to someone else and they had to leave- recurrent and untrue theme. Unless you have independent evidence that someone told her this it is probably safer to assume it is a delusion. Delusions are distressing, but a different kind of distressing to there being a real and malign character distressing her.
  14. fortune

    fortune Registered User

    Sep 12, 2014
    Thank you to everyone for your supportive replies.
    Still haven't broached it with mum! Just being a coward.

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