4 Comments

Dementia and the Caregiver Guilt Trip

sunrisebyColeI’ve been feeling overwhelmed by the ongoing journey with mom. Two weeks ago, I sat and observed her in the community center before going up to say hello and she looked so sad. I left wondering if we are doing right by mom and was in a funk for days over it. My mom told me for 30 years she never wanted to be a burden to her children which is why they moved into a Continuing Care Retirement Community (CCRC). A quick tour through my blog will tell you a very different story. I am honored to be able to advocate for her, but when she goes through periods asking me to take her with me, my stomach drops. I feel guilty that we should have moved her in with us, not into this memory care community.

In an instant my funk is lifted thanks to a comment by a woman I met at a business function. She told me her mom has dementia and her dad has been telling her over and over “If I go first, your mom is going to beg you to let her move in with you. Don’t do it, she would never have asked for that. It’s the disease, not your mother talking.” In an instant, this woman helped me realize what I knew, but emotionally got mired in guilt, and could not recognize.

My mom NEVER wanted to live with us. I know this because I remember a visit my mom and I made with a good family friend who told us that when they got old, they were moving in with their children. When we left, my mom spent the entire ride home berating the idea of a parent moving in with a child. Personally, I don’t think it’s a bad idea. It could have made things easier for us in many ways.

I’m lucky that I was around my parents and we had so many conversations that have helped me know what they wanted. It doesn’t always mean that I know it’s the perfect choice, however, I need to recognize that it is the right choice for all of us right now. Sometimes, it takes a new day and a new viewpoint to help us see the light. Freed. 

4 comments on “Dementia and the Caregiver Guilt Trip

  1. Hi Kay, I haven’t been blogging much this year because my husband and I did decide to keep his mom with dementia home, sublet our apartment in the city and move in to take care of her together. She always told me she did not want to live with us for the same reason your mom stressed before her dementia. I know it is a tough decision, my husband and I have been trying to figure out how to do this for a number of years now, always having some issue from his other siblings not to or when I was still taking care of my own parents the best I could from afar, spending half the year with them and the other half back here with my husband.

    It’s now been 5 months and we feel we made the right decision. Although, my mother-in-law did not want to be a burden, this has been the best “gift” I could ever give to my husband. We’re closer now than ever and mom is happier with us here with her, I know it, even though she can’t remember her not wanting to be a burden, she appreciates and feels the love we want to give her at this time in her life.

    Guilt is such a terrible feeling to have, I’m glad you are finding ways to feel free from it – you have done so much bringing to light issues surrounding parents with dementia, a great help to those of us out here dealing with it, too.

  2. I totally get the guilt trip thing, I think it is something all caregivers experience in some form or another. I know my mother also did not want to be a burden on me, but now she is struggling somewhere between life and death while I have once again moved in to take care of her. I only hope that her inner struggle is not guilt for getting sick and needing help.

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