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heartsore with grief and loss

heartsore

New member
Sep 18, 2020
7
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
63,055
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
7
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
16,716
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
13
@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
13,637
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
956
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
7
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
6,160
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
7
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
498
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
7
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
218
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
822
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
 

heartsore

New member
Sep 18, 2020
7
It is now nearly 6 weeks since I placed my husband into care. What a devastating emotional roller coaster ride. My dear husband has not adapted well.. he has lost a great deal of weight and now has to be assisted with walking and feeding.
I was warned that this may happen , but the reality was different.
After a couple of weeks I sought counselling because the feelings of guilt, remorse, betrayal, sacrifice, and even contemplating bringing him home again.. At the same time there was also an underlying feeling of relief that I did not have to be constantly on duty, no matter what 24 hours a day 7 days a week..

I think time and counselling have both helped.. My husband Colin is in a better space, though the decline has been extreme. The staff are kind and helpful and there is 24 hour care.
So I have to try and accept the fact that I did not cause the Alzheimer's and that I did the best that I could for as long as I could. We all have our own breaking point.. and often in life there are no ideal solutions, so we have to make difficult decisions.
I still write in my journal and re read what I have written. I am freer to do some of the things that I have not done for years.. Go out to lunch with a friend.. sleep late in the morning, have my grandchild spend a night and take him to a coffee shop for breakfast.
Yes , it has been the most difficult and terrible decision that I have ever had to make.. but from time to time now, I feel a little lifting of my spirits, for which I am most grateful.
I visit Colin most days, sometimes he recognises me and responds and sometimes not. So I feed him smoothies, rub his hand and arm and chat to the equally demented folk in his unit.. So a very different journey for myself and him.
So I will follow this new path and see where it takes me and continue to do the best that I can under these very difficult circumstances.. Thank you all for your encouraging words and support.. heartsore with grief
 

Dutchman

Registered User
May 26, 2017
822
Devon
Hi Heartsore. My poor poor lady. Believe me we are going through what you’re feeling in one way or another although everyone’s grief is unique to them as it is to you. I bet you feel your world is crazy with grief. There are no platitudes I would give because in all honesty that would totally wrong. I believe our grief needs careful handling and treated very very kindly. Just do what makes you feel better just then, at that moment and it’s very normal to feel whatever you do. I would suggest a book if I may “ it’s ok that your not ok” by Megan Devine. It’s the best I’ve found that comes close to making sense of my grief.

I don’t understand when you say you are able to feed him. Are you allowed into the home? If so then you’re blessed as Bridget’s home restricts me to looking through the windows. Oh to be able to touch her, that would be so wonderful.

My Bridget is on an even keel at the moment but at first we feared for her health as she wouldn’t eat. Now she eats all the time ( no weight gain though) .... she walks a lot!

Always post your thoughts and feelings here whenever you can. I use it all the time as a blog when I cry, get anxious, feel wretched, guilty, the whole raft of dementia carer emotions. Unload, please, as it helps.

Peter
 
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Hazara8

Registered User
Apr 6, 2015
537
It is now nearly 6 weeks since I placed my husband into care. What a devastating emotional roller coaster ride. My dear husband has not adapted well.. he has lost a great deal of weight and now has to be assisted with walking and feeding.
I was warned that this may happen , but the reality was different.
After a couple of weeks I sought counselling because the feelings of guilt, remorse, betrayal, sacrifice, and even contemplating bringing him home again.. At the same time there was also an underlying feeling of relief that I did not have to be constantly on duty, no matter what 24 hours a day 7 days a week..

I think time and counselling have both helped.. My husband Colin is in a better space, though the decline has been extreme. The staff are kind and helpful and there is 24 hour care.
So I have to try and accept the fact that I did not cause the Alzheimer's and that I did the best that I could for as long as I could. We all have our own breaking point.. and often in life there are no ideal solutions, so we have to make difficult decisions.
I still write in my journal and re read what I have written. I am freer to do some of the things that I have not done for years.. Go out to lunch with a friend.. sleep late in the morning, have my grandchild spend a night and take him to a coffee shop for breakfast.
Yes , it has been the most difficult and terrible decision that I have ever had to make.. but from time to time now, I feel a little lifting of my spirits, for which I am most grateful.
I visit Colin most days, sometimes he recognises me and responds and sometimes not. So I feed him smoothies, rub his hand and arm and chat to the equally demented folk in his unit.. So a very different journey for myself and him.
So I will follow this new path and see where it takes me and continue to do the best that I can under these very difficult circumstances.. Thank you all for your encouraging words and support.. heartsore with grief
Six weeks will feel like an eternity. Yet it has been evident from long-term association with dementia in a good Care Home that a period of " settling " often runs into months. Alzheimer's can be varied in presentations and remains a mystery and thus a constant unknown embedded in one that we have known so very well. It is certainly important to have those ' distractions ' which allow respite, moments when you are psychologically free of remorse, guilt, anxiety. That is not a betrayal of the feelings which come about during the time one spent with a loved one whilst caring prior to the transition into the Care Home. Nevertheless, the bond remains and so do the feelings, despite the fact that those very demanding daily challenges which drove one into physical and mental despair now are the responsibility of the Care staff. They in their turn provide the professional manpower to enable Care as an ongoing and nurturing process, subject to a carefully prepared Care Plan, within an environment which often develops into a truly "best interests " abode for the loved one concerned. There are cultures which find it unacceptable to relegate Care beyond the actual home, but they have traditional values and social structures whereby a household might consist of a large body of relations who can apply a continuous regime of care as a norm, an unbroken process much alike that of the Care Home. The truth of the matter is that whatever one likes to think might have been, or notions of perhaps not going that extra caring mile, the reality is remorseless and unavoidable. You simply cannot go beyond your capacity to provide the level of Care which truly benefits the one you love, without the inevitable happening. Breakdown, illness, self-destructive thoughts.....
In short, there are no other options. The mind therefore shifts into another mode. That of the actual situation as it now stands. Away with ' guilt ' and all the 'ifs and buts' which haunt your heart and mind in the contemplative hours. Let the Care Home become an extension of a relationship, not a negative thing. Day to day is really the watchword in this extraordinary dementia journey. The current Pandemic has been profoundly ill timed and posed very significant challenges for everyone. There is a balance to be made of course in respect of protection and welfare of society overall. That balance embraces leisure and entertainment, social interaction, educational needs, and all of those things which are held to be of genuine importance. Yet we know that the simple holding of a hand or the gentle embrace of a loved one living within the nether world of dementia, is a fundamental which does not understand any barrier, because it goes beyond all things, it is an instinctive expression of compassion. It is very important.
 

Wishing20

Registered User
Feb 27, 2020
26
Seems we have all experienced all those emotions mentioned above, no one understands unless they have a LO with Alzheimer’s:(
@heartsore you say your allowed to visit? Which part of the country are you. My poor Mum isn’t even allowed a window visit. Didn’t know Covid could get through a closed window, so really don’t understand that at all!