Catch do you cope with the guilt?

Discussion in 'I care for a person with dementia' started by Rugbymum, Oct 24, 2019.

  1. Rugbymum

    Rugbymum New member

    Oct 24, 2019
    I provide support for a lady who is 'adopted' family and have done since a relative of mine, who she lived with for 50+ years, passed away some 6 years ago. Up until the last 2 years she coped well, we would see her most weeks and she would come to stay for respite, company and Christmas, we supported her with care plans as her needs have changed and ensured her wishes have been followed. Sadly she has been declining significantly over the past 12 months and we have finally had a diagnosis of dementia, although it is fair to say it is now fairly advanced. We moved her into some sheltered accommodation some months ago as she was struggling at home (but she is strong willed and not wanting to admit defeat so it took a while)

    .. I probably should add here that I live over 100 miles away...

    Anyway, despite care packages and visiting at least a couple of times a week (often before work- a good 5 hour round trip) her general health, and safety, is deteriorating and with multiple bounces in and out of hospital (yesterday being the latest admission) it is clear that she needs 24 hour care- something that she has absolutely refused.

    The guilt is all consuming and this is what I am struggling with- so I saw her on Saturday and then yesterday had to bounce her into A&E with suspected sepsis (it wasn't)- after spending hours waiting for her admission I am left with a two hour drive home and a feeling that I cannot do right for doing wrong. Guilt for not sorting 24 hour care for her, guilt for not following her wishes, guilt I live 2 hours away, guilt for missing the kids school meeting, guilt for having to leave work early, guilt for not having sorted this all before, guilt for feeling frustrated with her for spending 4 hours asking me why don't i hurry the consultant up, ......I know it is illogical but it is all consuming.
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @PharmacistJane you are welcome here and I hope you find the forum to be a friendly and supportive place.

    What you describe is, unfortunately, all too common so I'm sure others will be along with helpful comments

    Apart from that, do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list. If you are interested in this, clicking the following link will take you there.

    You will see that there are Fact sheets that will help withal aspects of dementia.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
  3. Rosalind297

    Rosalind297 Registered User

    Oct 14, 2017
    It may be little consolation but the guilt comes with being a caring and compassionate person, one with a sense of responsibility for the welfare of someone who has been a part of your family for many years. You must be congratulated for all that you have done and will do.

    We are told to get the guilt monster off of our shoulders but it isn’t easy. All I can say is that if this lady is in moderate to late stages of dementia as you suggest, she will have no conception of a) what her needs, as opposed to her wants, truly are or b) the effort that you go to to meet those needs. If she did not have this disease I’m sure she would be grateful for all you do but dementia steals away the ability to see things from any perspective but their own. My mother has moderate dementia (stage5) and lives in the moment - so would equally not be able to understand why the consultant hadn’t been nor why you can’t fix it in the way mayor fix everything else. I’m afraid the carer just has to learn to live with it. I can tell you from personal experience that guilt isn’t the only emotion you have to battle, frustration, resentment and anger seep in to it from time to time. Saying try not to take it personally sounds glib and trite but it’s another skill one has to learn.

    There will be others along shortly to give you much better practical advice but I just wanted to say I empathise.
  4. Champers

    Champers Registered User

    Jan 3, 2019
    Someone sent me this article, which I found sums up the guilt emotion conflict all carers experience. I know it talks about parents but applies just as equally across the board. The points the writer makes are very valid and true and does help putting things into perspective.

    This excerpt definitely struck a chord with me:

    “Feeling less guilty involves the realisation that you are not the only person who can provide some comfort for your mother, allowing you to mobilise other people”
  5. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    Wow. That is such an interesting and thought provoking article. And helpful, because like everyone else here I feel guilty that I cannot fix the problems my parents are having. But the truth is, they aren’t fixable, I just have to help them find ways to work round them and encourage them to do what is right for them.

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