How do I cope with the responsibilty for the decision to put John in a Care Home

[Margaret938]

Hello Jackie, I have just read your story and all the replies. I have sort of fallen by the wayside on TP, but all these kind replies you have had are so reminiscent of how much help I got a year ago when my darling George also went into a ch. Just like you the guilt was more than I could bear, I missed having MY George so much that I felt that life was no longer worth living. My two sons were worried about my sanity. In felt that the whole world was against me and without George I could no longer function. I got lots of help from TP and realised that I was not alone, that there were so many people just like me, going through just what I was having to go through. On Friday we will have been married 50 years and if anyone had told me then that this would happen I would not have believed it. I never even knew what AD was then. Ask any of the kind people who replied to your post how I felt a year ago, and they will tell you I felt exactly how you feel right now. I am not going to lie to you and say that it will get easier, because it won't. I have good days and bad days, I visit every afternoon for 3 hours and on Sunday I spend the afternoon and evening with George, after tea we go to his room and watch TV together and I bring his supper up to him, I then get him ready for bed and tuck him into bed and lay my head on the pillow beside him until he falls asleep. For these few hours I can pretent that life is normal, although I know that as soon as I go out the front door of the ch, the reality hits me and more often than not I walk down the road unable to hold back the tears. After many months I learned that this was my life now, and I had to cope for George's sake. Life has to go on, I know I have to do all the things we did together but do them alone, like sharing the houswork and doing the garden, I have to keep them nice the way he wanted them to be kept, everything I do I do for him.
On 10 December I managed after a long struggle to get the consultant to agree to taking George off the antipsychotic drug Risperidone, and thankfully it has changed his personality completely. He is calm and contented now, smiles to everyone and above all my visits with him are a joy. I make sure that he gets lots of kisses and cuddles and I tell him all the time that I love him. Unfortunately he lost the power to communicate a while ago, but I do get the occassional 'I love you' back and you have no idea how much these three little words mean to me. Never give up Jackie, there will be bearable days and unbearable days and there will always be tears, and, yes there will be regrets and guilt which all of us know only too well. Above all look after yourself, your husband needs you more than ever now.
Margaret xx

 

[grey bunker]

Hi

I have read all the posts with a lump in my throat and tears in my eyes. You have covered all the emotions I felt and still feel about my wife Ros being in a nursing home. She has been there for almost a year now and there have been no problems so I am luckier than some of you. Ros is a 'walker' and I spend my visits walking the corridors and garden!

All I can add is there is never a right time and making the decision when you have the chance to pick the home you want is better than waiting until going into care is essential and your choice of home is limited. Ros went into the home well before I thought she would have to but she is in the home that was top of my list whereas other carers in my support group have held back and ended up with little or no choice about the home for their relative.

As My GP put it - I am now a husband again and not a carer.

 

[martinjohn]

I have only just seen this new forum, (some time since I've felt able to come on here).
John is 65 and was diagnosed at 62, though I knew myself for some time before I could get him diagnosed. He is what the Psychologist described as "high functioning", confident and authoritative, which had the medics fooled for some time. Unfortunately I think I must be described as a "Low functioning carer", because I just couldn't stand up to him and cope physically, mentally or stamina wise. He was in and out of respite more frequently till I finally reached the realisation I just couldn't have him back at home.

It was the cruellest decision I have ever had to make, or that ANYONE should have to make. It seemed and still feels inhuman - how could I do it to the person I love and have loved since our teens. I feel Alzheimers makes pygmies of us all eventually, but me much quicker than anyone else. The CPN, Social Services and all my family and son advised he needed 24 hour care for our "safety" and my health, which finally helped me make the decision.

His respite became permanent care a week ago and I feel like a 'child murderer' or some sort of monster. In fact I'm finding it almost as hard to live without him as it was to live with him. The grief alone is exhausting - what I would give for just 10 minutes with MY JOHN , as he was pre AD. Trying to cope with him as he is now, without the help of John as he was then is what I just can't do.

Every visiting session at the home is just torture as John's sole topic is my conduct in putting him in, and desperately wanting to come home with me, I now have to slip out while the staff keep him otherwise engaged as he races out as soon as the door is opened. They are slowly gaining his trust to do the dreaded things like go to bed, change his clothes, personal hygiene etc but not on a regular basis. And he eats their food, all things he refused to do for me.

I have just read the recent posts here and the feelings of deja vu and regret are overwhelming . I know I can't cope so I can't regret the decision to put him in, I just regret that I was no longer able to face living with it all day and night any longer like a lot of you still are. I just feel like a fraud in comparison to all of you.

Goodnight, godbless and here's hoping for the welcoming arms of sleep.

Jackie

hi my name is martin i have alzheimers was told at 55 yrs old coming up to 60 now our lifes fell apart had to give up my work which meant no money coming in self employed it is hard to watch my wife give so much and going without we were not rich but she could go and treat herself whenever go on holiday every year no kids at home she is herself disabled osteoarthris since about 34 yrs old so had it tough herself what i am trying to say is no guilt should ever be felt there comes a time when we are not the person we once were and we would not want you to feel that way i only hope my wife has the sence and courage to put me in a home where i can live the rest of my life out we made a pact that my alzheimers would not become her alzheimers i still make her go away with friends and do the things that she should be doing i wish sometimes i was not so aware but i am a fighter and allthough i cant win this fight i will not give up remember the person that was not the person who is now they have gone we dont want you well i dont want to see my wife having no life because of this vile deseace i wish everyone in the same position all the best and be strong we know its not easy sorry if my diction is not very good it has taken me ages to type this yours sincerely martin

 

[Margaret938]

hi my name is martin i have alzheimers was told at 55 yrs old coming up to 60 now our lifes fell apart had to give up my work which meant no money coming in self employed it is hard to watch my wife give so much and going without we were not rich but she could go and treat herself whenever go on holiday every year no kids at home she is herself disabled osteoarthris since about 34 yrs old so had it tough herself what i am trying to say is no guilt should ever be felt there comes a time when we are not the person we once were and we would not want you to feel that way i only hope my wife has the sence and courage to put me in a home where i can live the rest of my life out we made a pact that my alzheimers would not become her alzheimers i still make her go away with friends and do the things that she should be doing i wish sometimes i was not so aware but i am a fighter and allthough i cant win this fight i will not give up remember the person that was not the person who is now they have gone we dont want you well i dont want to see my wife having no life because of this vile deseace i wish everyone in the same position all the best and be strong we know its not easy sorry if my diction is not very good it has taken me ages to type this yours sincerely martin

Martin you are so brave, I salute you. Margaret x

 

[jaymor]

hi my name is martin i have alzheimers was told at 55 yrs old coming up to 60 now our lifes fell apart had to give up my work which meant no money coming in self employed it is hard to watch my wife give so much and going without we were not rich but she could go and treat herself whenever go on holiday every year no kids at home she is herself disabled osteoarthris since about 34 yrs old so had it tough herself what i am trying to say is no guilt should ever be felt there comes a time when we are not the person we once were and we would not want you to feel that way i only hope my wife has the sence and courage to put me in a home where i can live the rest of my life out we made a pact that my alzheimers would not become her alzheimers i still make her go away with friends and do the things that she should be doing i wish sometimes i was not so aware but i am a fighter and allthough i cant win this fight i will not give up remember the person that was not the person who is now they have gone we dont want you well i dont want to see my wife having no life because of this vile deseace i wish everyone in the same position all the best and be strong we know its not easy sorry if my diction is not very good it has taken me ages to type this yours sincerely martin

Hello Martin.

Your post is a very inspirational one. I will take you to task though but in a very nice way, not criticising but said with respect for you.

When the time comes, and it may never happen, but if it does, your lovely wife won't be putting you into a home. She will be like all carers looking after a loved one, looking for the correct care for you needs, making sure it is the right care home that can cover all your needs and one where you will get all the care and love you deserve. Once all that is sorted she will be there making sure all is as it should be and ready to jump should something not be quite right. She will still be caring.

I know that since my husband went into his nursing home and I see the care he has, as long as our children go to the trouble we I did to find his nursing home then I have no fear of care home care should I ever need it.

You are a very understanding man and dealing with this horrid disease with dignity, bless you.

Jay

 

[LYN T]

Hi Martin

Thank you so much for posting you are a real inspiration and we all need and appreciate brave people like you on TP.

I hope you will post again

Take care

Lyn T

 

[supagran]

I've only just joined as well.

I've only just joined the forum as well.

I know how you are feeling, I have been through a period of reactive depression and feeling so guilty about my husband. Please don't feel guilty, it is just a new normality which will take some adjusting to as the person you married and spent all those happy years with now needs a new beginning, as do you - you will still be part of each other's life but in a new way - you have to allow yourself to grieve for what is gone and embrace the new beginning.

My husband Dave has had a series of health problems starting with a stroke in 2010 which destroyed his optic nerves, left him partially sighted. We had only just started enjoying life as it took a while for him to come to terms with things but he was fantastic once he embraced his new life, kept his vegetable garden stocked and tended, helped elderly neighbours with their gardens and enjoyed family get-togethers. Unfortunately he had a second stroke in November last year and hasn't improved since then. He had recurrent UTIs and hallucinations, needed 24 hour a day care and despite having fantastic carers - two carers four times a day he had a post stroke convulsion and then a heart attack, came home and two days later had to be re-admitted as had a raging UTI and was so agitated and frustrated I had to call the police. He will now need nursing home care and the hospital are attempting to find out what type of dementia he has so that he is appropriately placed. The hospital have been so helpful and understanding and I have taken the chance of respite care offered by them. Unfortunately because of his multiple problems finding an appropriate home is difficult as he needs 24 hour 1 to 1 care - he is too aggressive for me to care for him at home at the moment and I am just hoping they come up with something soon as he is slipping away from reality day by day. We don't have any children so all the burden of running the home, night care etc had fallen to me. I am lucky as once he was back in hospital this time all the things that should have happened from November last year onwards have finally kicked in and the help we both needed is coming

Take good care of yourself, my thoughts are with you

I have only just seen this new forum, (some time since I've felt able to come on here).
John is 65 and was diagnosed at 62, though I knew myself for some time before I could get him diagnosed. He is what the Psychologist described as "high functioning", confident and authoritative, which had the medics fooled for some time. Unfortunately I think I must be described as a "Low functioning carer", because I just couldn't stand up to him and cope physically, mentally or stamina wise. He was in and out of respite more frequently till I finally reached the realisation I just couldn't have him back at home.

It was the cruellest decision I have ever had to make, or that ANYONE should have to make. It seemed and still feels inhuman - how could I do it to the person I love and have loved since our teens. I feel Alzheimers makes pygmies of us all eventually, but me much quicker than anyone else. The CPN, Social Services and all my family and son advised he needed 24 hour care for our "safety" and my health, which finally helped me make the decision.

His respite became permanent care a week ago and I feel like a 'child murderer' or some sort of monster. In fact I'm finding it almost as hard to live without him as it was to live with him. The grief alone is exhausting - what I would give for just 10 minutes with MY JOHN , as he was pre AD. Trying to cope with him as he is now, without the help of John as he was then is what I just can't do.

Every visiting session at the home is just torture as John's sole topic is my conduct in putting him in, and desperately wanting to come home with me, I now have to slip out while the staff keep him otherwise engaged as he races out as soon as the door is opened. They are slowly gaining his trust to do the dreaded things like go to bed, change his clothes, personal hygiene etc but not on a regular basis. And he eats their food, all things he refused to do for me.

I have just read the recent posts here and the feelings of deja vu and regret are overwhelming . I know I can't cope so I can't regret the decision to put him in, I just regret that I was no longer able to face living with it all day and night any longer like a lot of you still are. I just feel like a fraud in comparison to all of you.

Goodnight, godbless and here's hoping for the welcoming arms of sleep.

Jackie

 

[pinkann]

I have just read the letters about puting a loved one into a care home. I too am in the same situation, My husband has Lewy Body dementia and I've cared for him for 5 yrs. My daughter and I give a ' bed bath' two or three times a week, the carers we have coming in won't attempt this as it is against 'HEALTH AND SAFELY' rules. In case they damage their backs. I am 74 yrs this year and it obviously does' matter about my back. I really don't know how much longer we can carry on as we are doing at the moment. Lewy Body dementia means Parkinson's symptoms as well as Dementia. My husband has NO mobility at all and we have to transfer him from his chair to the stair lift in the wheelchair
and then from the stairlift to the bed in another wheelchair. he can't stand whilst we dress him. but. I still can't give in and put him into a care home. Everyone says he would need nursing care. I'm terrified of having to live alone and very worried about it all. We've been married for 53 yrs, how can I live without him.....

 

[petromany]

Hi Jackie, I know what you are feeling as I had the same experience. My hubby went into a Nursing Home 2 months ago, under the pretence of respite, and wants to come home with me when I visit, like you, the staff have to distract him when I go. It is the most heartbreaking thing I have done, and I miss him so much, and the guilt I feel is churning me up. I am trying to adjust to the situation, but it is so hard, it is quite a lonely life, Friends, due to the dementia, have long gone, and you do feel so alone. It is probably like a bereavement in a way, although the person it still there. I suppose with both of us time will be a healer. It is our 55th wedding anniversary tomorrow, and I have done a cake to celebrate with everyone, but it wont be the same. he wont have a clue, but I wanted to do something. Well take care of yourself and make a new future for yourself. Thiking of you. Elaine

 

[bood]

How I sympathise with you all. I went through exactly the same thing last year, seven months down the line I still feel guilty and visit my husband nearly every day despite having to drive or bus half an hour each way. I feel it is the one thing I can do for him even though he doesn't remember me the minute I leave or have the pleasure of looking forward to a visit. It is lonely and like you all I would give anything to have him back as he was just to be able to explain to him what is happening to us both.
A carer told me the time we spent together in the CH would be of better quality than that spent at home and that is true and comforting.
I can't enjoy my life alone, back to the can't live with him, can't do it without! Its good to share, thank you all.

 

[Owly]

This line from Martin's lovely post needs reiterating.....Martin you are sweet and brave and wonderful.

"we made a pact that my alzheimers would not become her alzheimers"

Why let this ghastly disease claim 2 victims when at first there is only 1?

Our best way of battling this enemy of sanity is to keep our own sanity and our health and blow a huge raspberry to this THING that would like to claim us too.

 

[melbourne]

you are not alone

I too am at a crossroads after 7 years. Husband has frontal lobal dementia, plus alzheimers and vascular. presents well but needs everything done, cannot shave, wash, shower. Its exhausting doing and thinking of everything. Care is so expensive, how do folk cope. Now need respite for a week every 6-8 weeks just to carry on. Never a nights sleep, I cope with great family support what do others do and how do you all pay. We are all different as is every sufferer. ideas please