Being a carer is not the same as bereaved

My friend is a carer for her husband who has Parkinson’s disease. She works tirelessly to attend to his needs and has to do all the jobs that he now cannot manage so her life isn’t easy. She says she is in the same situation as I am, but I disagree when she says that the feelings are the same. She can still talk to her husband and go to bed with him each night. She tells me at 15 weeks into my grief to go out and chat to people or meet someone for coffee and just think about the good times, not to dwell on the lost future together. She has no idea how grief can wipe out your energy or how constant crying is your only companion. What do others think.


Totally agree I am 12 weeks since losing Eileen and really have no compulsion to meet and socialise,I realise at some point I will but I am same and spend a lot of my non work time crying and asking for a miracle ,people mean well ,I was a full time worker but also a carer when needed for Eileen ,she deserved more help but again didn’t wish to be seen as disabled ,I am the same in that if she had come through her operation I would have packed in work to help her ,it didn’t happen and I the same would love to be close to her no matter how poorly she was ,saying that I wouldn’t have wanted her to suffer that would have me being selfish
I so so miss her as I guess you do your husband x

Dear @Jean2, you’re correct that grief can totally drain you, and maybe she’s just trying to be positive, without realising that she’s actually coming across as insensitive and not helping. Sometimes people just don’t know what to say.

If her husband has Parkinson’s and needs help with the most basic things then maybe she feels his life has already lost all worth, and she feels sad that he is just existing, and not living. If he has a type of Parkinson’s that causes cognitive impairment, such as Dementia with Lewy Bodies, then the feeling of loss can be exacerbated. A guy at this forum lost his wife to dementia and he wrote that he felt as if he had suffered two bereavements, the first when she got dementia, and the second when she died.

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Looking at it differently, for about 6 months before my husband passed I was going through anticipary grief, because I knew he wasn’t long for this earth and the pain I felt was just as bad as it is now that he is gone. I spent many hours out of his earshot, crying for what had been and for what was to come. So, yes watching your loved one deteriorate is such a shock to your system. And you do mourn them while they are still here.


You’re absolutely correct, @Margarita1, there is also anticipatory grief, and that is what the friend might be feeling here. For you, knowing that Marcial didn’t have much time left, and that he was going to die, meant that the emotions you experience with grief started before he actually died. Glad you have recovered from the pneumonia, take care.

Dear Margarita
I do understand what you are saying about going through grief before it actually happens. I knew for ten years that I might lose my husband and did suffer terribly the first few months after finding out. I went walking every morning and cried my eyes out and then returned home and fixed that bright smile on my face again. Eventually I was able to put it to the back of my mind as life continued as normal but his last months I realised I was losing him and couldn’t do anything about it. It’s your worst nightmare and as you rightly say a terrible shock to the system. It’s thought by others that we have time with them that is precious but we are living in a private hell, waiting and watching and trying to cope.

Hi Jean
I had a conversation at my husbands funeral with a friend. She told me I was lucky as my husband had died and I could move forward but her husband was in a nursing home with dementia and didn’t know her. She couldn’t go forward or backwards and was stuck. I didn’t take offense as I did understand what she was saying. I wasn’t sure who’s shoes I would rather be in though.
Pat xx


Dear Pattidot, I know what you are saying, I had three years with him, I was under enormous pressure to be my usual positive self and like you I was going through hell on the quiet. Such a difficult time, bless him, I never thought he would go before me because he was always so healthy. Me on the other have had everything but the kitchen sink. Take care my dear if you need to chat send a private message. Wishing you the best. Take care. Margarita x

Dear Abdullah, thanks for your kind words and yes I’m much better and recovering well from the pneumonia. Keep well, best regards Margarita