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A difficult topic: guilt and loss of affection - Carers UK Forum

A difficult topic: guilt and loss of affection

For issues specific to caring for someone with dementia.
I am sure I am not the first person, by any means, to raise this here: the guilt and sorrow that comes from no longer being able to connect properly with the person for whom one is caring as his personality changes with the illness.
My husband was my best friend: we had so many things in common, including our profession. There were so many things we could talk about, from the mundane and trivial to the arcane details of our academic research.
Now he has problems even reading a novel that he has read many times before. I tend to avoid small-talk, because his frequent incomprehension leads to the need for elaborate explanations that are not even warranted by the topic. It is a relief to be able to have an occasional simple conversational exchange that is fully understood, like, 'Did you give the cat some more food?' 'No, I haven't fed him'.
I no longer enjoy his company at all. This is a terrible thing to admit. He is a pathetic old man for whom I feel real pity and compassion, but in many ways he is now a stranger, not the soul-mate and admirable intellect whose company I cherished for so many years and decades, the person whom I admired and respected as well as loved. It is terrifying to realise how something as apparently fundamental as our character, our personality, is governed by the physical functioning of the brain.
I feel so guilty that I no longer want to talk to him much, because it is such an effort for so little return. I want to preserve his quality of life as much as I can, but I also have to think of my own life. I listen to music, work at another language I am learning, and communicate with friends and colleagues in real life and on the internet. All this excludes my husband, and we used to do so much together. I often wish that I had not survived and recovered from the serious illness I suffered last year: perhaps if I were no longer around, my husband's children could look after him much better than I am able to. Image

Hi Tristesa, I'm sorry that you are in such a difficult situation. Are you getting any help at all? Any opportunity to follow any of your own interests? Age and illness are cruel, accepting that we cannot make our loved ones better is difficult. On the other hand I was widowed at 54 when my husband had a heart attack. I wish he was still here every day, I know he would have hated not being able to do the things he used to, but I would still have him here to love, and be loved. I'm sure the man your husband used to be would hate to know how he would end up. There are no easy answers to any of this, I'm afraid. You mourn the loss of your husband's once able brain, yet he is still with you in body. Have you contacted the Alzheimer's Society? They cover many different aspects of this disease, and might have some books or other material to help you come to terms with your situation, even if it's not actually caused by Alzheimers. You should not feel guilty, you are not responsible for your husband's health issues, and you are clearly doing your best. Don't feel guilty about taking some "me" time either, it's vital, not a luxury.
Thank you for your reply, Bowlingbun. I have read up so much about his condition (Lewy Body Dementia) that sometimes I even feel resentful about that! It is a subject on which I never wished to become an expert: researching topics that interest me is second nature, but the different types of dementia, and the grotesque ravages they wreak on the human brain and character were never on my list. Now I have no choice.
As I have mentioned in other posts, I have issues with one or two (not all) members of my husband's family, but I am already aware of all the potential help that may be available. I have just received the 30-page A4 booklet that constitutes the application form for Attendance Allowance... Image
No, the real problem is the loss of the person who was so precious to me. He is physically still there, and physical frailty (which is particularly marked in some forms of Lewy Body Dementia -- the Parkinsonian-like muscular weakness, hand tremor etc.) is something to which I can adjust. But his mind, his personality, are going away, so I no longer know him. I don't know how to adjust to that. Perhaps I shall learn.
Thank you for reading and replying, anyway. Image

Hi Tristesa

I know where you are coming from. Ever since my hubby had a road accident 18 years ago he has not been the same person. I had originally been told he had brain damage and this was the cause. This is now in doubt at the moment, but, whatever the cause, my hubby is no longer the same. He can talk (a bit slurred), walk (a bit unsteady), wash and dress, but there is not much else that he does without a lot of prompting. I have numerous conversations talking at cross purposes, or ones that resemble 20 questions, which is very frustrating. As you say, it is the lost of the persons character that is so difficult. Hubby was a very resourceful, practical man, who renovated a semi-derelict Victorian house when we were first married. I am now going to have to get in a handyman to put up the curtain rails that are coming down Image
Im afraid I dont know what to suggest.
Hello Tristesa,

Up late, have a few problems to mull over, and read your post.
My husband suffered cerebral infarcts in March 2012, due to an overdose and being found unconscious. He has a severe and enduring mental illness which, up to that point, was our main concern. Now I find I am sitting with an old man, one with whom a conversation is 'different'. I got a bit upset today, because I am having to move back into our family home as my tenancy on my 'bolt hole' is coming to an end. I left as I didn't get the help needed when he became unwell again, I wanted him sectioned and it didn't happen...he set fire to himself and our home, took overdoses and I had to leave as he saw me as evil. Now I am up at the house, when I'm not at work, painting and cleaning and spending money I don't have, to get it habitable. I got cross with him, and he put his arm around me, patted me, saying 'there there', I wanted to hit him with something heavy.....only in my mind. I didn't get any feeling of being comforted and I resented him for it. All we can do is our best, and hopefully one day we will be rewarded. Much love xxx I'm going to try and get some sleep, work tomorrow!!
Good morning Treez,
I am sorry you are in this situation and can understand where you are coming from.
I was leaving my hubby of 37 years when he had his stroke that led to vascular dementia, 6 years later with a hubby who can do nothing for himself, not even feed himself, I do sometimes question why I stayed, especially in the beginning though I have to say things are easier now as hubby is very compliant.
You do not have to take care of him if you do not want to you know. No-one can be made to care for someone else even if they are married.
Easy for me to say but if you really cannot stand to do it then let Social services know, they will put pressure on you to do it, but it is your life. You have a job now but you could feel pressured into giving it up if your hubby gets worse, could you stand to lose your life outside the home?
I consider myself lucky in some ways because hubby was an alcoholic with all that entails behaviour wise and now he is a much pleasanter man even if it is hard work.
Pm me if you would like to talk more
take care

I know what you mean, although I care for a parent not a husband which must be even worse.

I think dementia is a cruel illness and in many ways a living bereavement. What made our loved ones unique is disappearing before our very eyes. I think you (and I and many others) are suffering from a bereavement even though the person is still alive.

I don't have any easy answers; only you can decide if you want to continue caring but if you do, at least make sure you get regular breaks so that you can do someting else other than caring.

Ane x

I am so sorry to hear about your situation.

My mother was diagnosed with dementia some years ago and until 2012 my father was her primary carer at home.

I know first hand how difficult it was for my Father to adjust to the change in the relationship. In fact, he is now doing research into precisely this issue.

Just today I posted in the forum about this research, I'd very much encourage yourself (or anyone in this sort of situation) to have a look, perhaps get in contact to discuss your experiences.

http://dementia-care-research.com.au/a- ... l-message/
Thank you to everyone who has replied. I think 'living bereavement' is a very apt description of the experience, because one is gradually losing all the things that made the person one's friend and soul-mate in the first place. There are times already (and my husband's dementia is not yet even very advanced) when I feel that I am taking care of a stranger, a perfectly nice and rather pathetic old man for whom I feel pity, but nothing more. The essential elements of his character, the things that brought us together in the first place, still shine out from time to time, but that will happen less and less often.
AlexPerth, I have taken a look at your father's website, and I shall definitely try to contribute to his research. I think there may be quite important differences between caring for a parent with dementia and a partner. Our parents cared for us when we were children, and the situation is reversed in their old age (even, to some extent, when their health is still good). Our parents were 'always there' for good or ill; we did not choose them. Many of us always had some relationship difficulties with a parent, and though dementia will make it worse, we have at least had some practice. My late mother and I had a very difficult relationship, but I had been accustomed to that for as long as I could remember, much as I loved her. Happily, she retained all her mental faculties up to her death at nearly 96, but she could hardly have been more of a trial at times even if she had been ill!
But a partner, a spouse (assuming a happy marriage/relationship): we chose each other, and we did so because our personalities complemented each other, because we had common interests and enjoyed being together. Losing the characteristics that drew us together in the first place, and that formed the basis of a happy and satisfying bond, is an exquisite torture.

I think there may be quite important differences between caring for a parent with dementia and a partner.
Tough call that one. My beloved MIL changed completely in the last 2 years of her life and I found it unbelievably hard to accept. It is certainly different when it is a parent rather than a spouse/partner, but I wouldnt say that one is any easier than the other.
Losing the characteristics that drew us together in the first place, and that formed the basis of a happy and satisfying bond, is an exquisite torture.
Thats it in a nut shell