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

[small]

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

 

[LYN T]

Aw Jackie

You and me both.

Dementia puts a new slant on the phrase 'can't live with them-can't live without them'

Your story so mirrors mine and my Husband's {Pete)

My OH was also 'high functioning'- I have a good few letters from Psychiatrist/Neurologists saying 'Mr T we can find no sign of Dementia. Your problems stem from anxiety'. They all missed the point that P had no reason for anxiety. Good job that he loved.Loving family. Enough money to be comfortable.Loads of friends etc etc. Didn't help that a brain scan he had showed Dementia and it was missed.

Pete was eventually diagnosed at the age of 65 with bi-polar and Alzheimers. By then he was already at the moderate/severe stage (another scan) Like you I was told that P needed 24 hr care-and I couldn't do that. So last June P went to a CH,

By that time P had forgotten that I was his wife, was violent/ agitated and could go for 48 hours without sleep. He couldn't be left for a minute on his own. He was doubly incontinent and resistant to personal care.

Dementia is different from person to person and I'm lucky in some ways that my Pete has no concept of home so he doesn't ask to leave the CH. (Actually P has lost the ability to speak coherently) But the seeds are slowly being sown that your John is starting to slowly settle. The way he speaks to you, as you know, is not the way John would have spoken to you when he was well.As for wanting 10 minutes with the 'real John' well I would love to do that with Pete. I would love to be able to explain why I couldn't care for him at home any more (although he would be horrified at what he has become) I would also love to tell P that I love him (as I do every day) but for him to remember.

Jackie you have done nothing wrong. You had no choice. And you will still care for John and be his 'voice' when needed.

Don't doubt your skills as a Carer. You did your very best and you will continue to do so.

Take care

Lyn T

 

[truth24]

What moving posts. I haven't reached that point yet although it's difficult enough to make the decision to place F in respite care so how hard it must be for you to make that final decision I can only imagine. My heart goes out to you but know one thing - you are not guilty. You love your husband and had no choice in the matter. Have you tried counselling? I used to feel that I also was the world's worst carer but after some initial resistance, had some sessions over about 3 months and have now come to accept, mostly, that I am merely a human doing the best I can for someone I love very dearly. It may help you too!

Sending a big hug.

Sent from my GT-N5110 using Talking Point mobile app

 

[rajahh]

My husband went into full time care last December.

my Gordon has no concept of me as his wife, or wanting to go home.

I too would like 5 minutes of MY GORDON. But letting him return to his AD state would be even more heartbreaking.

Gordon also eats food he would not eat at home,

I am blessed in a way though as all the carers comment about what a pleasure it is to care for him, and he does sometimes respond with a smile.

This disease has at least two victims, the patient and the one who loves them.

Keep talking to us we do understand

 

[Noorza]

I just wanted to highlight these words from your entirely moving post.

You wrote "for our "safety" .

You did it for both of you not just you. You put him first as you have always done and this is the best thing for him, for where he is at now. He is safe, what else can we achieve for our loved ones? I understand how you feel, it's a devastating illness but so long as you know you are doing the best for your loved one, there's nothing to reproach yourself for.

 

[Scarlett123]

More heartbreaking posts that I can empathise with so much. I think it must require nerves of steel to make the incredibly hard, but inevitable decision, to place your spouse in the care of others, and I know I too will have that unenviable path to take.

Please don't "down" yourself as to your abilities as a carer Jackie. Unless you've trodden this dreadful road, nobody understands the hell on earth it can be to live with the alien who has taken over the body and mind of the man who once made your heart sing.

Like others have said, I would give anything to just have some time with "my John", but instead I have a complete stranger, who spent 2 hours yesterday evening, effing and jeffing at me, and shouting that I am a complete cow.

Sweetie, all I can do is put my virtual arms around you, and assure you that I have nothing but sympathy for your predicament. You're not a fraud, but a devoted and caring wife, who has been pushed beyond the limits.

As I've said before, when I stood at the altar nearly 50 years ago, and made those sacred promises, including "in sickness and in health", the only sickness I'd seen from John was a cold. Even though "Man Flu" hadn't been invented then, that would have been the worst I could have expected. None of us thought of AD.

Wishing you peace - and sleep.

 

[Rageddy Anne]

Loss....

...and here am I, feeling the same as all of you, desperately trying to convince myself that I can cope, but with arthritis doing it's best to get in the way. My sister in law and my daughter in law are worried, I know, and there are times when my husband is amazingly self aware, and yet a few seconds later it's obvious that he's 'lost it' again. So there are glimpses of the man I know, but mostly he's been taken over by a hostile stranger who I don't like at all. It's all so confusing to cope with.

 

[Noorza]

It's the cruellest disease and the only one I know of where they are taken from us twice, I've said it before on here to apologies for sounding like a stuck record, but they become lost to us while they are here.

It is heart breaking and does make you feel guilty for not being superhuman and able to cope.

 

[angelface]

I hope I never have to decide what Jackie has needed to decide, it must feel a dreadful responsibility.

I think when it comes down to it, there is no alternative but for the person with AD to go into care. By the time you get to that stage, I think you will have tried everything to keep them at home.

Maybe you could look at it from the other way round, ie what would happen if your OH was still at home? Perhaps he might have walked under a bus, or hit out at you in anger? If your health breaks down, who is going to visit him?

Dreadful though the situation is, that CH is the only possible solution to an impossible problem.

Sending love and strength

G

 

[dymphna]

Just another voice to assure you that you have taken the only decision possible. Surely you will gradually find sleep, peace and, yes, freedom. Please enjoy those moments we all yearn for(I know I do) when you wake up and have a good idea of the shape your day will take knowing you will not be consumed by that numbing weariness.
I miss the real Paul who showed me naturally how to cope for 53 years.I shall always miss him whether his unpleasant doppelganger is here or in a CH
Hope you have a good night's sleep and a good day tomorrow.
Love D

 

[petromany]

Hi, my hubby also entered a Nursing home recently, and now I am getting more sleep than I have had for the last 3years, and feel a lot better, it is so heart breaking when I leave him and I cry all the way home. It is so heart tugging when they want to come home, but I know in my heart of hearts that I must leave him there. The family are worried sick about me I know and are frightened that I will bring him home, knowing that I would be at rock bottom again before too long. Nobody knows until you experience it how difficult it is. So I fully sympathise with you, and know the guilt you feel. I am going through exactly the same. All I am doing at the moment is visiting him every other day, and take him out to our normal world as long. As he is able, and I have to be strong when I take him back.

I like you, must adjust to being alone, but it is not easy, I just hope it may get better in time. Try to take care of yourself and nobody will think you are weak, that's what I am telling myself. Xx

 

[JayGun]

I have nothing but admiration for anybody caring for a loved one with dementia, and I think there are special challenges when the loved one is your partner.

The thing us, we all do our best for as long as we can, well past the point where we're coping. In the end though, isn't a care home inevitable for most people with dementia?

From what I've read on here, at the right time, it's often better for the person with dementia to go into a CH than to stay at home being cared for by someone who is run ragged and worn to a nub and can no longer handle them at the stage they are now at.

Jackie, I hope you soon sleep the sleep of someone who knows that they did their best, and will continue to do their best. I think what you're feeling is grief for who your partner used to be. You probably didn't have much time to think about things when he was at home, and you're doing what they call "processing" now.

You'll feel a little better about it all soon I bet. xx

 

[Mouse2014]

Sending you huge supportive hugs.

You've made the most difficult decision with the very best of intentions so please dont feel guilty. It was a decision that HAD to be made.

This disease is a scourge and its devastating and cruel.

Love to you
Mouse x

 

[jaymor]

I had my husband at home for 7 years. Did I keep him at home too long? Maybe maybe not.

When I was told he really needed to be in a nursing home, was it the right time for him to go to the nursing home?Maybe, maybe not.

Was agreeing with the professionals that he needed this extra care that was to be 1:1 care with nursing the right decision? Yes it was without any doubt at all. Hindsight is a wonderful thing. I know I had the strength to go on caring but was it right for me to carry on on my own. It was a question I never asked myself I just kept going.

Nothing is black and white when dealing with dementia. We just have to do our best whether it is for two years or twenty two years. No two sufferers present the same problems at the same time.

It is hard and we can only do what is best for our loved ones. If you cannot cope then they are going to suffer. There is no disgrace in not being able to cope, some can, some can't. I could not jump out of a plane or scale Mount Everest but there are many out there who jump for pleasure or climb a mountain because it is there. We do what we can and we should be proud of what we do. 10 years ago if anyone had told me what was I front of us I would have said what rubbish, no one would be expected to live their lives like that.

Take care and carry on caring, it might be different but you still keep caring.

Jay

 

[LadyA]

My husband is still at home, so I can't know how you feel (yet). My own GP talked to me about my situation last week though, and one thing she said has stuck with me. She said "You have to ask yourself: If William was receiving the level of care that he is getting right now, in a nursing home, would you be happy with the level of care he is getting?" It brought me up short, because thinking about it, I realised that no, I wouldn't be happy at all. I can't keep up with the personal care, not because I don't want to - but because he is very resistant to personal care. He frequently is in the same incontinence pad from morning until evening, because he won't let me change it. I'm doing very well if he gets a twice-weekly bath with the Care Assistant (last time she was here, he went ballistic, and I finally had to ask her to just leave it and we'll try again this Thursday - Bank Holiday here today, so she wasn't working). So, would he better off in a nursing home? Better cared for? Probably. Would he be happier? No. Not at this point. But I think there will come a point when it will be necessary. And I'm glad for the GP's putting it to me that way - it gave me a different way of looking it.

 

[small]

my thanks for your replies

i'm afraid to say that pretty soon after writing my thread, I got so overwhelmed with grief that my brother got me to go and stay with him for some R&R. It certainly "broke the spell" of a downward spiral I was racing down. I'm now back home but can't stay overnight here yet, so I'm sleeping at my sister's a few doors away, and just returning here for a few hours each day. So my response to all your comments has been delayed till now.
I can't quite believe the width and depth of experience and emotional understanding you show in your responses. It does help hearing from others facing such similar yet diverse problems. It was really helpful to be reminded about the safety aspects of John's care - I definitely couldn't guarantee either his safety or my own as I was feeling afraid he would turn on me in the night.
Hopefully time will start to heal . And I might have the confidence to take him out on my own soon, although his paranoid anxiety about anything & everything around him make that very daunting yet.

I wish you all a peaceful night, and thank you all so much

Jackie

 

[Saffie]

Even though it was not my decision to place my husband in a nursing home, I still feel the guilt dreadfully and probably always will.
The question of whether I should have fought harder and for longer still haunts me and if I chose the right home crops up whenever there is a minor concern with his care.

Like others, this guilt becomes yet another awful part of this life we lead where we are married but detached.
Where we have responsibilites towards our husbands but cannot carry them out in the way we would wish.
Where we have to watch others do the caring that we feel we should be doing but can no longer do.

However, we have to learn to live with it because there is no alternative.
We can only do our best against this disease which seems to make a mockery of all we hold dear.
Sympathy anbd understanding. It does get a little easier to bear. x

 

[afossil]

My husband had said that if ever he got like his father we should put him in a home so I knew he would not blame us, but it did feel like betrayal. It helped my feelings of guilt to discover that the first home could not cope with his aggression either! The next one is so much better and I now feel that he is as happy as he could be under the circumstances. He was already beyond the stage of asking to come home so that helped and I have rarely taken him out beyond the immediate walking environs of the home as if I do manage to get him in the car I then can't get him out again! I was advised not to visit too often initially but to let him settle and I think that was good advice. Two years on I can pop in and out whenever I am passing. I find it distressing but he does not, as far as I know. Who can tell what is still going on in the brain? He is better cared for now by experts. Love can only do so much.

 

[The Prisoner]

Hello Jackie. I`m new to this site however, I am also not new to your position.
Placing a loved one in a home is sometimes what they need, rather than want.
If you keep beating yourself up it will be you that also suffers.
I put my father in a home in 2012 and he passed away in february 2013.

I was advised by my boss to be a son to my dad and not his carer (my job).

Good luck with your dilemma but just remember, do not feel guilty if you decide to house your father in an alternative arrangement.

I wish you well Jackie xx (Steve)

 

[Kate Grillet]

Kate G

]I do feel for you. My beloved lived with Alzheimers for 18 years. I cared for him at home for 16. We had Continuing Health Care funding for 5 years and this enabled us to have a series of live-in carers, but the strain of managing them and him, was sometimes more than I could bear, and a respite 2 weeks in a care home turned into 2 years; he stayed in 3 care homes (I moved him twice because they felt I was too demanding about the care he was given, and I sometimes 'whistle blew' about the care of other residents) He died 2 years ago, and I am still heartbroken. One way of coping with the move into care, was to spend a lot of creative, fun time with him and his companions, without the physical strain and with plenty of sleep, but I often shared tears with other relatives as we left in the evenings. A word of advice- keep a detailed diary - you may need it, as care home records are notoriously bland and inaccurate. I won an Appeal when his funding was withdrawn, with my records showing the level of Health needs he had. I wish you luck with the hard road you are traveling - try to find enjoyment where you can. A person with Alzheimers lives a life of the senses so music, singing, delicious foods, flowers and herbs, things to hold - all play their part. Find what you enjoy doing with him, and be inventive ! Kate G