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Not coming home

Josoap

New member
Mar 14, 2018
8
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.
 

davidsitges

Registered User
Apr 26, 2018
13
The home have asked that she signs an agreement that she will stay there permanently. They have suggested asking the GP to talk her though it. Has anyone else been asked to do this?
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.
 

BevvyJ

New member
Jul 2, 2019
2
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.
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.
 

Lifebuoy44

Registered User
Jun 21, 2014
18
Sleaford, Lincs
I am so sorry lifebuoy that your wife is distressed. The Admiral nurse told us that when emotional upset is present memories stick more. Unfortunately the situation may not even be directly related to the Pwd - it could have been an overheard conversation or even snippets of ideas from the television. I don't know how much recall she has - would she be able to give you any information at all as to where she got this idea?
If it isn't possible to understand how it happened it may be easier to change to subject, talk about other things and to be as positive and reassuring as possible.
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?
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,824
Nottinghamshire
@Lifebuoy44

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.
 

Josoap

New member
Mar 14, 2018
8
The home have asked that she signs an agreement that she will stay there permanently. They have suggested asking the GP to talk her though it. Has anyone else been asked to do this?
fortune, post 1644773 member 46415
 

Josoap

New member
Mar 14, 2018
8
fortune, post 1644773 member 46415
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
 

Josoap

New member
Mar 14, 2018
8
We signed Mummy's care home agreement, we have LPA. I would be very concerned about them trying to get her to sign anything - as raised above, how could she consent?
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.
 

Helly68

Registered User
Mar 12, 2018
549
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.
Ah OK, thanks for clarifying
 

Izumi

Registered User
Apr 25, 2017
2
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.
 

kindred

Registered User
Apr 8, 2018
2,344
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?
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.
 

Dosey

Registered User
Nov 27, 2017
96
My OH has been in NH now for almost a year. When he was in NHS Assessment centre he constantly wanted to come home. Since moving in to present NH he rarely mentions it unless he is really agitated . Like Jale we call the carers nurses and explain that they are needed to care for him. With regard to signing documents, I have Financial Deputyship but not H&W because this can't be obtained once person cannot give consent and every big decision made by Multi Discipline team on 'Best Interest' basis. Asking your Mum to sign anything would be pointless as she wouldn't be able to understand what is explained to her. I signed all NH documents as Next of Kin. I did have a similar situation with DWP, who insisted on seeing OH before accepting me as Appointed Person for Benefits, but the chap that visited was very gentle and understanding and didn't press OH on any points. Hope this helps
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
 

Trekker

Registered User
Jun 18, 2019
157
London
Dear All,
My OH and I have seen these issues at first hand on two periods recently, The first was when my wife fell from our bed, as a result of a Urinary Tract Infection in April. She was in a Community Hospital for seven weeks, where she overcame the UTI, then went down with a chest infection; recovered from that to go down with another UTI; then another chest infection, and came home with Throat Thrush. All the time she was in hospital (45 miles from home) I was involved in a nine-hour daily visitation programme and she spent the entire time worried about being abandoned there. Dementia is so cruel to make our OHs suffer such worry and insecurity!
More recently, I was taken into hospital for an emergency procedure, followed by two weeks recuperation, during which she had to endure Respite Care (though it really is a lovely, caring home with devoted staff). She is now home with me, but some evil, stupid person told her she was there because I had "dumped her". For most of today, this thought has been prevalent in her mind!
We all know (don't we?) that one day, we will have to make that terrible decision and hate ourselves forever afterwards, but I know I really cannot cope for much longer, especially when unhappy thoughts are planted in such a vulnerable mind by some despicable person, making my OH even more difficult to guide and manage through daily routines.
Has anyone else encountered such a situation? Please help me to know how best to deal with my OH's related insecurities and destruction of trust? I feel so out of my depth. Thank you, in hope and love,
Lifebuoy44
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.
 

fortune

Registered User
Sep 12, 2014
145
Thank you to everyone for your supportive replies.
Still haven't broached it with mum! Just being a coward.