Caregiver’s Guilt and Regret

Dear Dr. Neimeyer,

My wife has been gone for several months, but I can’t seem to stop thinking about her and focus on my life now.  It’s not her death that troubles me as much as her life in her final couple of years.  She had increasing dementia at the end, and I frequently misunderstood her behavior as intentional or just thoughtless, though I now recognize that many of the things that frustrated me were the result of her disease, and the problems of memory and speech that it caused.  But I am left with the guilty feeling that I was often mean or cruel to her in the course of my caregiving, which became more and more intense as the disease progressed.  I guess that I was also bitter and disappointed, as that wasn’t what I imagined our retirement years would be.  But now she is gone, and I don’t know how to “fix it.”  I’m open to any ideas you have about how I can make this better.

Theodore

Dear Theodore,

Intensive caregiving of the kind you describe can be isolating and exhausting, and made all the harder by the recognition that our best efforts will not turn back the clock and return our loved one to the person he or she once was, in view of the advancing disease process that dementia entails.  And the reality of medical systems in our country means that respite care that gives caregivers a break from their 24/7 responsibilities is both rare and costly, contributing to the well documented prevalence of caregiver burnout, especially when families are small and dispersed over great geographic distance.  All of these factors make it difficult to give an optimal form of loving care to our family member, especially when the signs and symptoms of dementia are so easily misread as willful carelessness or lack of concentration, particularly in the early stages.

So what now might you do with the preoccupying thoughts and feelings that you are left with, all this time after your wife’s death?  Here are a few ideas.

  1. Seek understanding. Research accounts of other caregivers who contended with similar struggles during the time of their loved one’s illness. Many will have experienced some version of the struggles you did, and discovered affirmative ways through the maze of stresses and emotions these engendered.
  2. Reach out for mutual support. In many places, including the web, those who have been caregivers meet virtually or face-to-face to seek and offer help to one another through a difficult passage.  Going beyond reading the accounts of others to sharing your own could help break down your isolation, normalize your feelings, and help rebuild ties with a community that understands what was uniquely hard about the living loss with which you and your wife were trying to cope.
  3. Ask for your wife’s forgiveness. In an important sense, you continue to carry your wife’s presence within you, and it is with this internalized image of her that you need to make peace.  In the midst of her disease and your exhausting caregiving, neither of you was in a position to extend compassion consistently to the other, and acceptance of your respective insufficiency to meet the other’s needs.  Now, however, you are better able to imagine and perform a healing dialogue with her, allowing the loving and contrite part of you to address the loving and wise part of her.  This could be done, for example, through an AfterTalk letter in which you express you guilt and wish for how the caregiving could have gone, as well as your sentiments regarding how you would like to move forward with her memory and presence in your life now.  Writing back from her in response, you could lend her your pen or typing fingers to say what she would have said, not at the depths of her dementia, but instead from a place of clarity and caring.  Such correspondence can be deeply healing, and go a considerable distance toward completing the “unfinished business” left by complicated circumstances at the end of life.

–Dr. Neimeyer

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