My husband died 10 weeks ago. he was 83 and we had been married for 54 years and together as a couple for 56 years. For the last 3 years of his life he had dementia which got worse during the pandemic. he was living at home and confused but not aggressive and he did not wander but had no real communication skills and could not explain anything. He knew what he wanted to say but just was unable to form the words. His death was not caused by dementia but by a severe delirium which occurred during a hospital stay for a heart problem. he was due to come home but had a very bad fall in the ward splicing his head and then developed Covid. He recovered from Covid but delirium set in badly and he had to go into full time nursing care as he could not move or do anything even to the extent of not being able to move his arms due to total rigidity. The care home was good but it was very hard for them too to cope with his needs. eventually he stopped eating and drinking and passed away. I was not with him at the time even though for the last few months I had spent 3 hours each day with him . Sometimes he was asleep and other times he was aware that I was there. I loved him so much and am crippled by grief and remorse because I became impatient at times when the dementia set in because I was so worried and scared by the situation. He was always the stronger and more stable one in our relationship⌠a rock to me and all our family. I found it very hard to cope emotionally with the dementia and was literally torn apart at seeing this lovely clever man being destroyed by the illness because with dementia there is no hope of any comeback. Now life seems unreal and the void without him even with the dementia is something I canât seem to cope with. There are so many "if only2 moments such as why didnât I be more patient , why didnât I admit that I was struggling emotionally and why couldnât I have been there when he died. Is there anyone else out there who also fells or felt like this.
Pat8
I think we all suffer from âwhat ifsâ and âwhy didnât we say this, that or the other) but I think your circumstances made things more difficult for you. I do hope you soon find peace and find the happy memories, of which Iâm sure are waiting for you. I was married for 54 years and we were together for nearly 58 years. After 22 months I will always love and miss my darling. Big hugs to you.
Oh @Pat8, dementia truly is a very cruel condition so try not to be so hard on yourself (easier said than done, I know).
Youâve really experienced a double bereavement.
The loss of the lovely, clever man you knew as he succumbed to the dementia, then the final loss of your dear husband when he died.
Trust me Pat, you would have had to be a living Saint to never feel impatient given what you were trying to manage 24/7.
I adored my lovely husband - he was my life - but that didnât stop me getting impatient with him at times - and he didnât have dementia!
I wasnât with him either when he died.
He died suddenly and unexpectedly while I was away from home and a dear friend went in and found him dead in bed after Iâd asked him to call round and see why Mr Wingingit wasnât answering the phone.
I too started down the mental guilt pathway of âwhy didnât I justâŚâ, âif only I had/hadnât done/ said this, that and whateverâ, but honestly Pat, I gave myself a good talking to and settled for âI did what I did based on what I believed at the timeâ.
I did my best and he knew I loved him wholeheartedly - as I suspect is the case for you too Pat.
Beating ourselves up helps no-one, least of all us, and just makes us feel 1000 times worse than we already feel.
The grief alone, is more than enough to cope with.
Forgive yourself Pat (though there really isnât anything to forgive) and be kind to yourself.
Take care.
X
Thank you for your kind words. We are all in the same lonely boat and my husband always used to say to me whenever I panicked about problems over the yearsâŚâWe have to take the longer viewâŚnot the short view, all this will pass.â Well we all know the void will not just pass but maybe one day things might seem easier to bear. Thank you once again.
Thank you for your kindness. I wouldnât have wanted my husband to carry on in the state he was in for his own sake. Just all very hard for anyone in this situation and some people are braver than others or manage to hold it together. But I appreciate your kindness and I am sorry for your loss too. I used to talk to other people who had suffered a loss like this but I never imagined that the grief would be so overwhelming. How naive I was. Thank you. Your words help.
I donât think you have anything to reproach yourself for.
Hi your posts about guilty feelings & self blame all ring so true to me. Itâs the first time Iâve really read from other members posts about this & I guess it helps to know I wasnât the only person who felt impatient or didnât always have the right caring words.
we know we shouldnât beat ourselves up over it but how do you actually deal with it.
I wonder if others have had counselling specifically about this & if it has been helpful or whether it is just bringing back all the pain of those sad times ? & doing more harm.
Thanks to all for the support given on here.
Yes I donât think counselling would really help as it would be a stark reminder . I just felt so upset and frightened and worried about my husbandâs dementia that I changed from being the person I had always tried to be. Not a day went by without me crying as it all felt so hopeless. Whenever the next step in his mental deterioration occurred it was like a body blow to me and I grieved every day. There seemed to be no support from immediate family as they were all so busy with work and their own families and I donât think they realised the toll it was taking on us both with me being so uptight and upset and probably making my lovely husband more worried too. I did the best I could taking into account my own personality. He was always the calm one in our marriage and I was the more volatile one but we cared for each other so deeply and it is as you say so painful. I hope you find some solace.
Regret and guilt are par for the course for many of us.
Penny went into hospital after an MI, and bit by bit things stopped working because her heart was obviously far too damaged to cope.
Of course, being the man of the house, I thought of myself as the man who provided protection for her, nobody could hurt her while I was around. In addition, I have had some health crises in my life, MI, tumour in ,my head, prostate cancer, and I survived them. Everything comes right - or so I felt.
Therefore I couldnât accept that she wouldnât recover, even though she kept going downhill before my eyes. No way was I going to let that happen!!! I wish Iâd let that thought get into my thick head, because I was always overpositive with her.
In retrospect, I should have been aware that she was scared of dying (she told her best friend, but not me). I should have been more comforting, holding her hand for hours, and telling her I loved her.
Then she was gone, and it was too late!
Itâs 5 months since she went, but Iâve forgiven myself by realising three things:
Iâm only human and therefore fallible.
I did my best to protect her, but some battles are not winable.
What I did or didnt do, would have made no difference to the outcome
Youâve had your troubles and with your own health too. Thank you for replying. You are right the outcome would not have been different but I am honest about myself and his dementia brought out the worst in me at times because I was in despair. However when I mentioned to the memory clinic at the start of his dementia that I wished that I didnât become so angry at times , the consultant repliedâŚ" My dear, I hear that many times every day of my life , people just canât tackle this type of illness." His words made me feel somewhat better. I wish you all the very best and thank you for taking the trouble to reply.
Thanks for your reply Pat8 & kind words.I think with dementia the grieving begins at the time of diagnosis as with many degenerative diseases. Right from the start of the illness the hope is taken away unlike other diseases where there are treatments with potentially good outcomes.
The answer has to be in forgiving & being kind to , but ourselves but easy to say not so easy to do especially at 3am.
Oh for one more hug âŚâŚ
Pat8 my husband passed away a month ago. He was 66 years old. He had dementia but passed due to heart failure. I know how you feel. I feel so guilty for the times I got frustrated with him. I watched him slowly decline for over year. I dealt with him being in and out of the hospital, nursing facilities and aids at home. I was constantly scared for us for our future for being alone. And now I am alone and donât know how to move on.
Hello and thank you for your kind words and I am with you in my thoughts too as I can now understand the sorrow that you are feeling. I felt so out of my depth ( like you did yourself) witnessing his decline and not knowing what the future would be. Although having seen what happened to two close friends with the same disease I felt that I knew what was coming which was worse because it made me more scared and more worried and I hate to admit it but more irritable with him. I just couldnât seem to handle it all emotionally and he was such a gentle and kind man so I will always wish that I had been more patient. Like your own husband he passed away because of heart failure and the after effects of hospital acquired Covid plus a head injury which happened in the hospital. I am so sorry about your own loss and all I can say is that like yourself I feel totally bereft and cut adrift. The memories of our life together no longer give me happiness but only grief and I wish I could forget and move on. Dementia is a dreadful thing to witness in your beloved husband as it seeps into everyday life and destroys a relationship. I hope you have family who can help you through this. I have 2 sons and their families but their lives are so busy like most youngsters these days but they are kind to me.