It’s not so easy to honor your loved ones wishes when they have dementia

NYtimeslogoToday, an article appeared in The New York Times echoing some of my laments in honoring my mother’s wishes titled Complexities of Choosing and End Game for DementiaMy husband sent it to me after listening to me last night talk about some of the choices I have to restate in moving my mom to a new community.

The subject of the article, Jerome Medalie, states “If I’m not me, I don’t want to be.” My mom has been saying this to me since I was in 7th grade — in different terms, but her meaning was the same. After her mom came to live with us, and wasn’t able to do more than stare out the window, I began to hear my mom tell me what I was supposed to do if she wasn’t doing well. She either told me to push over a big chest of drawers on her or hold a pillow over her head. Two very horrible choices that I would never perform. She would say them sarcastically, but it continued even into my 40s. She said it enough, that even my husband knows this about my mom. Because my mom shared these thoughts with me for so long and was so consistent, I understood her beliefs about how she wanted to live and age.

Here I sit and she doesn’t know what to do from moment to moment. For the past month, she has recognized me, but we have gone through periods where she didn’t know my name and was shocked to learn I was her daughter.

Now that she is in palliative care that was recommended by three different attending physicians, I struggle sometimes with questions like:

  • Do we give mom a flu shot?
  • If she skips a meal can we offer her Ensure or another form of nutritional shake?
  • Do we send her to the dentist?

My mom was very clear and has even at times shared her frustration at living with her “bad brain.” She’s had to learn to accept help to dress, toilet, and just move across the room now that she is in a wheelchair. She will still ask for my Dad and is disappointed when he doesn’t appear.

My measuring stick is if it “gives her pleasure.” However, I pause at the dentist since my dad ended up dying of a tumor on the back of his tongue that went undetected. But exactly where and when does this begin and end? Conflicted.

6 thoughts on “It’s not so easy to honor your loved ones wishes when they have dementia

  1. I really appreciate your dilemma, having been through this so recently with my mother. Everyone’s answer is different but I was more interested in my mother’s momentary pleasure than in prolonging her life, so when she asked for a chocolate milk shake over the nursing home lunch, I gave it to her and she loved it….The fact is there is no wrong answer

  2. Kay, this is a very difficult situation for which there is no one-size-fits-all answer. Usually the family knows best what their loved one would want.

    My brother’s wife died from early-onset dementia. Throughout her disease journey I suggested my brother ask himself this question: “What would Patty want?” abbreviated, WWPW? I suggested if he applied that question to the various nuances of her disease, e.g., would Patty want a photo of her drooling to be posted on a Facebook page? would Patty want her hair to look like that? would Patty want this treatment or that? I felt he would come up with the answer that would suit his wife.

    I sincerely hope the best for you and your mother, knowing that what you’re facing is so very challenging.

  3. Went through exactly the same scenarios with dad and agree with Alice, above. Whatever gave him pleasure at the time was good, whether it was two slices of chocolate cake instead of something more appropriate or a wee whisky (which he seemed delighted to have poured and then barely tasted it). I was worried about the flu jab in case he had a reaction to it but finally decided on having it done.
    Wouldn’t it be so good if there was a one-size-fits-all answer to our many questions and concerns and someone could hand us a manual along with the diagnosis?

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