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heartsore with grief and loss

heartsore

New member
Sep 18, 2020
6
what an amazing group. I placed my husband in care on Monday and I feel as though my heart will burst with pain.
I could not cope with the longterm caring.. I was falling apart.
But the heartache is dreadful.
I feel that I have sacrificed my husband so that I can live .. but ... I dont know which is worse
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,985
69
Dundee
Welcome to the forum @heartsore.

I’m so sorry to hear about your situation but I’m so glad you have found the forum. You are amongst people who know what you’re going through.

Easy for me to say but please don’t feel guilty. You have done the best for your husband and you are still doing the best for him by placing him into care where a team of people can see to his needs. You will still be there for him.

Please keep posting. There will always be someone here to listen and to support you.
 

heartsore

New member
Sep 18, 2020
6
Welcome to the forum @heartsore.

I’m so sorry to hear about your situation but I’m so glad you have found the forum. You are amongst people who know what you’re going through.

Easy for me to say but please don’t feel guilty. You have done the best for your husband and you are still doing the best for him by placing him into care where a team of people can see to his needs. You will still be there for him.

Please keep posting. There will always be someone here to listen and to support you.
you are very kind... walking this journey is very very hard.. so it will be very helpful just to chat.
I started writing a journal about 10 months ago... wrote in it a few times a week depending on how busy I was with caring or exhaustion or frustration. I placed my husband in care on Monday this week and am suffering great guilt and heartache,, but when I re read my journal I can see how incredibly difficult it had become for me to cope.. But I still feel that I have sacrificed my husband in order to survive
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,703
66
Toronto, Canada
@heartsore Keep reading your journal to remind yourself how impossible things became for you. You may well find that your husband will thrive in care, once he has had a chance to settle. Don't forget - you also need to settle in, as you have made an enormous change to your life.

Please don't think you have sacrificed your husband in order to survive. In my opinion, it is likely that things could have got even worse for both of you, with possibly disastrous consequences. It is very hard to cope with guilt, but do your level best to ignore it. You have done the best you can and all you can. Nothing more can be expected of you.l
 

intheloop

Registered User
Jun 9, 2019
11
@heartsore I am sure everyone reading this has great empathy for you.
What you have done isn’t sacrificing your husband in order for you to survive. You have selflessly realised your husband’s needs will be better looked after in a care home.
We would all like our loved ones with us but we have to realise as this awful illness progresses we cannot meet their needs.
We feel guilt (it is inevitable) but we all realise deep in our hearts it is for the best.
You are not alone.
 

LadyA

Registered User
Oct 19, 2009
13,631
Ireland
@heartsore that guilt will be well known on here, so you are not alone with it. Everything in us feels that we should be enough. We should be able to care for our loved one ourselves until their death. I, too, had to read back over my (many, many!) posts on this forum during the time I was caring full time for my husband, after he had moved to full time care. Because, once the immediate experience has passed and the person settles in the Nursing Home, we start to think "Oh, maybe I was exaggerating in my mind how tough things were. Maybe it wasn't really so bad. Maybe I could cope if I brought him home..." I found reading back over my threads & posts was a good reminder to me of exactly why my husband needed full time care.
The thing is, you see, when a loved one (and maybe especially a spouse/partner) needs full time care, we tend to feel that we should do it ourselves. However, our "job" as their now carer and advocate as well as their partner, is to ensure that they receive the best possible care. And, sadly, very often that means not trying to do it all ourselves. We can't provide the level of 24 hour care that a fully staffed and equipped Nursing Home can.

One of the things that I could immediately see my husband benefit from was the stimulation of other people around him and the security of there always being staff around to help him . While he was still mobile, he would spend time walking around the nursing home, and would enjoy smiling at other residents, making the odd remark to them, enjoy the exercise, etc. He enjoyed the variety of people around him. It gave him something to engage with. I couldn't do that at home, where there was just the two of us, and he didn't have scope for walking, because of steps and other obstacles. Yet, even while I could see the enormous benefit to him, I still felt terribly guilty about it. I had to come on here now and then and remind myself of how bad things had been at home, and how much more thorough the care he was receiving now was.
 

jennifer1967

Registered User
Mar 15, 2020
885
Southampton
guilt seems a part of caring, guilty i didnt try hard enough, guilty i should be caring for him, guilty i put my health first.im there and i am still trying to care for him at home but im needing help now in the home and i feel guilty for that. no you cant be guilty, you did everything you possibly could for your husband and carried on long after you should have done. you are still his carer by visiting?lockdown and bringing in bits and pieces, having time just for him and not for the hundred and one things you used to do. probably amongst the guilt is the grief hes not there anymore. keep posting and writing about it. it will fade. maybe theres activities you can both join in at the home when allowed and create new memories.
 

Bezzy1946

Registered User
Jul 18, 2017
42
73
Watford
guilt seems a part of caring, guilty i didnt try hard enough, guilty i should be caring for him, guilty i put my health first.im there and i am still trying to care for him at home but im needing help now in the home and i feel guilty for that. no you cant be guilty, you did everything you possibly could for your husband and carried on long after you should have done. you are still his carer by visiting?lockdown and bringing in bits and pieces, having time just for him and not for the hundred and one things you used to do. probably amongst the guilt is the grief hes not there anymore. keep posting and writing about it. it will fade. maybe theres activities you can both join in at the home when allowed and create new memories.
My husband went into care in January as I couldn’t cope any longer. The guilt I felt overwhelmed me. I cried every day and felt upset when visiting him even though he seemed to settle in quite well. Then came lockdown and I didn’t seem him for months. I have had a few visits in between the home closing. Went to see him yesterday and he was really cheerful and chatty unfortunately home is locking down for two weeks. I still feel guilt and when I am gardening I feel he should be with me enjoying the sun and our lovely garden. I don’t cry quite so much now I try to keep busy. I still feel I have let him down but my health was suffering. We have been married 55 years and never been apart so the house does feel lonely without him. The lovely people on this forum helped me a lot during the first few months after he had gone into home. Love to you all xx
 

heartsore

New member
Sep 18, 2020
6
You are all so very kind and wonderful.. It is so helpful to know that I am not alone with these overpowering, ovewhelming feelings. Mostly I feel an enormous sadness.. for him .. for his situation,, the eternal guilt... no matter what anyone says.. So I plod on .. one foot in front of the other. It is 6 days since I have seen him due to lock down.. I know he is struggling.. I am sure that the carers are kind, but they are not me.. the failure I had not to carry on .. but also knowing that I could do no more.\
It is a cruel illness for both the sufferer and the carer....
It is so sad... I am so sad .. and I am so grateful I have found this group
 

marionq

Registered User
Apr 24, 2013
6,150
Scotland
Keeping a journal of some kind is an excellent idea. It is now a year since my husband died and when I read the notes and letters in the file I have it is like looking at someone else’s life. I feel so sad for that person!

I couldn’t have struggled on much longer although like others I sometimes try to convince myself if I had done this or that it might have been different. Ours was a good marriage but dementia changes everything.

This is the worst of times for learning to live alone but better times will come.
 

heartsore

New member
Sep 18, 2020
6
I think that my journal is very helpful. As you say, it reminds me of how difficult things were, and how near I was to collapse with anxiety, tiredness and looking at this long relentless road ahead. .
But I also felt inside me , that when I gave up and put him into care, it would damage both of us..
He is now struggling badly in care.. confused and disorientated.. early days yet BUT... although the staff are very kind and experienced, but they warned me to expect deterioration from the shock of the move.. It is called Transfer Trauma...
And knowing that , I put him into care, and I know now it has damaged me.. I am very sad because I have done this and now there is no going back..
and this is why I call it sacrificing him.... and a betrayal by me, of his trust in me.... because I could no longer cope..
This Alzheimers is a terrible disease
 

Jale

Registered User
Jul 9, 2018
496
So sad for the situation that you now find yourself in. I cannot begin to know how you feel, I found it hard enough to put my mum into a nursing home, but that is not the same as you are going through.

I think it is testament to your strength that you knew you were unable to cope and provide your husband with the amount of care that he needed, and by putting him into a home you put his needs above yours. I know it won't feel like that, if ever, but I hope that in time you will be able to see this.

Sending hugs for you, take care x
 

heartsore

New member
Sep 18, 2020
6
Listening to other peoples struggles is very helpful.. It does not change things but it brings to the fore the cruelty of this disease.. And how each of you cope ... Thank you everyone for your kind posts.
Yes I do find that putting all my random thoughts down into a journal helpful.. It helps to put into words the way I feel.. and I can write things that I may not have the courage to express verbally.
I have just returned from my daily 40 minute power walk.. Some of my friends say I walk like a demented creature ! Which I probably am right now ! .... But I have always found vigorous walking helpful... I have eaten my breakfast.... And I am ready to move forward for today... 1 step at a time,,,
warm affection to all of you xx
 

Whisperer

Registered User
Mar 27, 2017
212
Dear @heartsore please continue to put entries in your journal. Please be clear you did everything you could for your husband, you did not as you say sacrifice him. Dementia is an illness that just keeps taking. Recognising when you reach a point you cannot go on is in no way selfish, or a sign of weakness. On the contrary it is a sign of wisdom. In future please consider the following for your journal. In recent times how many times did you hear the birds sing, notice the many colours our eyes see, taste your favourite food, be able to relax and enjoy the company of your friends, indeed just relax, read a book, listen to a piece of music? Those I suggest were some of the small costs of your caring role. Please note their return along with others, welcome them back into your life.

Your husband would not want you broken on the wheel of Dementia. After all you have done as a carer your reward should not be embracing guilt. You have nothing to feel guilty about.

All of the above are just words. I hope they strike a chord, if not now then in the future. Please be gentle with yourself.
 

Dutchman

Registered User
May 26, 2017
807
Devon
Listening to other peoples struggles is very helpful.. It does not change things but it brings to the fore the cruelty of this disease.. And how each of you cope ... Thank you everyone for your kind posts.
Yes I do find that putting all my random thoughts down into a journal helpful.. It helps to put into words the way I feel.. and I can write things that I may not have the courage to express verbally.
I have just returned from my daily 40 minute power walk.. Some of my friends say I walk like a demented creature ! Which I probably am right now ! .... But I have always found vigorous walking helpful... I have eaten my breakfast.... And I am ready to move forward for today... 1 step at a time,,,
warm affection to all of you xx
hello heart sore. Just come across your post. Believe me I, as have many other here on TP, are going through exactly the same emotions as you are right now. I have written on here nearly every day for at least 3 years and believe me the dementia journey is like nothing else on earth. My wife’s been in a care home for just over 12 months because i reached a point when it was either me having a breakdown ( no good to anyone) or she would have needed to go into hospital.

At first i felt so much guilt you wouldn’t believe it. I seriously contemplated bring her home. But now i realise she was in so much anxiety, fear, unhappiness that it was a kindness on my part to let a whole load of carers do what i couldn’t.

I go 3 times a week but she doesn’t know me as Peter her husband , just someone nice. I didn’t understand at first, and it takes time, but please, please, please do not be too hard on yourself.

please reply and we can all help you

peter xx