If I’m not me, I don’t want to be.

imnotmetshirtDementia and end of life wishes don’t mesh. In a story I previously shared of Jerome Medalie that appeared in The New York Times last month, he was quoted as saying “If I’m not me, I don’t want to be.” His words linger in my brain as I follow-up with my mom’s caregivers to share that we should only focus on activities that give my mom pleasure. She’s never been a great eater and there is renewed concern over her eating habits.

My mom was very clear about her wishes. It was a gift that she shared them with me so I have no doubt about what she wants. However, I am struggling with how to fulfill her wishes. While I do not want to belittle this issue, I do feel like I had more compassionate options for my cat than I do for my mom. The story about the woman with cancer in Oregon who chose to end her life on her terms has helped elevate the issue into the national news. However, individuals with dementia don’t have the rights to choose to end their lives in those states that offer it. You can dictate advance directives, but dementia isn’t considered a “terminal illness” so it doesn’t fit into the legislative efforts to provide options being done by Compassion & Choices.

I wonder how I can help change this. I think the first step is to build awareness that we don’t have it right. I’ve navigated so many caregiving issues, but watching my mom progress into this disease without a way to really fulfill her wishes confounds and depresses me. I refuse to believe I can’t make a difference. Maybe not for my mom, but for those that follow.

My mom had completed medical directives and my husband and I were very specific when we completed our estate plans. If you don’t, Compassion & Choices does offer a Dementia Provision but as the article in The New York Times points out, “older adults themselves have begun a quiet debate about whether people who develop dementia can use Voluntary Stopping of Eating and Drinking (VSED) to end their lives by including such instructions in an advance directive.”

The only thing I have come up with was to launch a site that let’s people order shirts, hats, bumper stickers to bring awareness to the issue – cause I know how to do that. It could be a non-profit in which all the proceeds would be donated to help bring more awareness to the issue. If you have ideas on something positive we could do to offer more finite choices for those with dementia. I hope you will share them with me. Determined. 


4 thoughts on “If I’m not me, I don’t want to be.

  1. This is issue has been in the news a lot. Part of the effort going to Alzheimer’s research may need to be redirected to the ethics of treatment choices as more baby boomers enter the “danger zone.” We need new guidelines, and probably legislation, but that is a tall order.

  2. Such a hard one…. I definitely don’t want to hang around if I have advanced dementia, but where do you draw the line…? What if I change my mind? What would mum-in-law herself say on the quality of her life…? With any other illness, you still have capacity to choose – not so dementia…. 🙁

    1. I know! Thanks for commenting. It’s a tough one. When my dad changed his mind on funeral plans the final month of his life, we paused. I think there are so many issues with choice and dementia, but also know that my mom told me so many times growing up “If I’m like that, put a pillow over my head and take me out.” Not sure I COULD do it if it was allowed, but hope we come up with more options for all of us because I feel we are just seeing the tip of the iceberg on this issue.

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