I've decided I can't have mum home. She's been in either hospital or respite stay in care home since January. I feel terrible but I know I will not be able to cope with caring for her now she has regressed so much both physically and mentally. My big problem now is what to say to her. she thinks she's just there til she is well enough to come home - though she has forgotten what home is. Every visit is constantly asking when she will be leaving. It is really hard, especially as she is far more able mentally than the other residents who she refers to as a bunch of loonies. I have no particular concerns about the care home, staff are very nice and it seems well run. Wondering if anyone else who has been through this wants to share what they did? Thanks.
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.