The Hard Truth About Dementia


In my family, the hardest truth about my father’s dementia is that he doesn’t understand it while we do. He literally can’t understand it because of the way the disease hit him. That has been at the root of all our struggles with it and him over the years. His lack of comprehension drew out our ability to get him diagnosed and helped, plus it overshadows all of our visits with him.

His eyes tell the story of what's around him.
His eyes tell the story of what’s around him.
Early last year he would called me up to talk. My mother was living with me and my immediate family and my dad couldn’t grasp why nor where she was. She was with me because she was in physical danger being at home so that meant we had to lie to him about where she was. During one of the conversations, I tried to talk with him about his dementia diagnosis. That really didn’t go well. Any point I’d try to make hit a brick wall because he’d counter with how much of a genius he’d been during his life. He also couldn’t remember going to see the neurologist when he’d been diagnosed. As all of our conversations have done, this one looped on replay every few minutes. It also got more and more intense because his brain couldn’t grasp the truth it was faced with. I ended up hanging up on him in frustration and was utterly on edge and distressed for hours over it while I’m sure he forgot about it within minutes.

I still felt the obligation to try to convince him that he needed help. The alternative would be what eventually happened which was a near disaster. My brother, who’s been with me every step of the way, went with me to have a sons-to-dad discussion a few weeks later. Somehow we thought doing it in person with both of us might work and we needed to try to get him to see the truth. Obviously, it ended about the same way as my phone call. We left mentally fried and in despair because we knew there would be no logic in any future conversations. At a later appointment, our father’s neurologist wasn’t surprised based on what he saw in his patient. He’d never grasp the truth of his situation.

Fast-forwarding to today, the issue of truth still haunts us. The reality is that truth and confrontation over it is detrimental to a dementia patient’s state of mind. My dad’s had his medication levels reset and I’ve had the first visit in months where he can talk for a while. All he’s focused on is that he loves his family and wants to be with them. He wants to move back with my mom, wherever she is, and just have things the way they used to be. All I can do is tell him how nice that would be and that it’s all anyone would want. I know that’s impossible because she isn’t equipped to deal with him. I’ve seen him kick at another resident’s walker and at the dog in the assisted living home he’s at. There’s no way he’s going home and no way he could understand why if I told him that. All any of us can do is lie to him while he’s telling us that he loves us and wants to be with us. That’s a bitch to do while looking into the eyes of the man who raised you.

This makes the truth our burden now. As much as I love the man, visiting him is scarring. He gets agitated as he asks over and over to get a ride to his house. I feel like crap because I can’t do it and have to make up stories – over and over. He’s left in limbo and I’m left wondering which way my moral compass is pointing each time I do or don’t go to see him.
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3 thoughts on “The Hard Truth About Dementia

  1. It’s “cruel and unusual punishment” for victim and family, extended family and friends, all around. The disease knows no bounds of any kind. Both of us are so sad that it’s hit home. Your mom, Hal, and you and your family are doing the most that any of us could do. Jay & Harriette

  2. Dear Eric,

    My name is Ashlee. I’m co-founder of the Youshare Project, with the mission to connect people around the world through true, personal stories. I recently stumbled across your blog and read the above post entitled “The Hard Truth About Dementia.” From here I also read “Dementia And A New Normal.” Both are well-written and incredibly compelling.

    I think your and your family’s story would make a wonderful youshare, because I know other people around the world are in, have been in, or may be in a similar position in the future – and your story could help them in a myriad of ways.

    If this sounds interesting to you, I would love to email you directly with more information and formally invite you to adapt your story to youshare and share it with the project.

    I hope to hear from you soon.

    Best,
    Ashlee
    http://www.youshareproject.com
    ashlee@youshareproject.com

    1. Thank you, Ashlee. That’s why I’m writing these stories. Getting them out helps me and publishing them may help others. You’ve got some compelling stories on your site. I’ll have to spend some time reading them because there are so many experiences which have been captured.
      I’ll send you an email with contact info. Thanks for reading and reaching out.

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