Tag: being seen

Care Partnering, Inspiration, Love, Music

happy birdday mummy

My Alzheimer's Story

Mom was born on September 27, 1928. If she were still alive, she would have been 94 today, September 27, 2022.

On her birthday in 2015, her last one here on this earth, I visited her in jail, just as I did almost every day for several hours for four years. Here’s how I greeted her and how she responded:

Mummy is what she called her own mother. The full and wonderful story of what happened on her last birthday may be read at the three posts below (or here, here and here). Not surprisingly, reading them again just now made me cry ❤

it’s better to be queer on your deer than funny on your bunny on your birthday

put a candle on a cupcake and see if you feel as lucky as my mom

love comes in all shapes, sizes and colours including small, furry, and black and white

Care Partnering, Hope, Inspiration, Love

10 important facts i learned about people living with dementia from being my mother’s care partner

My Alzheimer's Story

My mom (right) and her brother Eddy (left) during one of their last visits together (April 2013). They both lived and died with Alzheimer disease and dementia in their mid eighties.

My mom, who lived with Alzheimer disease, and I were care partners for more than a decade. My care partnering role changed and evolved during that time. When it began, I lived overseas. In 2011, when it became clear she could no longer live on her own, I returned to Canada to live with her in her own home. She was relocated to a nursing home, which I came to call a “dementia jail,” on November 16, 2012. For the next forty-five months I visited Mom for several hours virtually every day.

I didn’t see her on August 11, 2016; I didn’t have the strength that day. But I was by her side for the next six, and I held her hand when she died on August 17, 2016.

Being my mother’s care partner was the hardest thing I have ever done. It was also the most rewarding. I learned so much. I loved so much. I cried countless tears. I wouldn’t trade the journey for anything because I also experienced the deeply spiritual privilege of loving another person unconditionally.

Below are ten important facts I learned during and after the time I spent being my mother’s care partner (I’m still learning!)

People who are living with dementia, no matter what “stage” of the condition they are living with:

  1. are human beings with wants and needs just like the rest of us
  2. have feelings just like the rest of us
  3. have rights just like the rest of us
  4. deserve to be treated with dignity, just as we all should be
  5. are aware of the world around them, even when it seems they might not be
  6. are capable of loving others
  7. deserve to be loved and cared for
  8. can teach us lessons if we are open to learning
  9. are different than us, not less than us
  10. are not “empty shells”

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take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

13+ needs we share with people who live with dementia

Hope, Humour, Inspiration, Love

your name is a queen (elizabeth shares a lesson on labelling)

My Alzheimer's Story

Let it go (it doesn’t matter if they know you or not) is one of MyAlzheimersstory.com’s most shared pieces. When I posted it on Facebook in January 2020, long-time follower Elizabeth Dunbar shared this delightful story:

My dad knew my essence until his last breath. Labeling and putting people in boxes and pigeon holes is a human convention. Other animals recognize each other without knowing relationships or each other’s history. They just accept.

So whether Dad knew my name or my relationship to him or not didn’t matter to me. I remember going away for a few days about a year before he died. When I returned, I bounced into his room as always. He looked quizzical. I realized he didn’t totally remember me, and I gave him permission to do that.

“I know you’re not feeling well enough these days to totally remember me,” I said. “Is it ok to give you a hint?”

He nodded his assent.

“Well I’m the daughter. One of two children you had. I’m the one that talks a lot!” I joked.

He threw his head back and laughed with tears in his eyes.

”Your name: it’s a Queen,” he said.

“Yes, that’s right,” I said. “I’m Elizabeth. Queen Elizabeth.”

We both laughed.

This was a simple conversation we had many times after that. Sometimes I think he was lucid and pulling one over on me, because that would be him. I always treated him like he was my dad, and let him know that any forgetting was simply okay.

I love this story. It’s so hopeful and helpful, and speaks to the power of playfulness and going with the flow. Thank you so much Queen Elizabeth Dunbar.

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

how often do we fail to recognize them?

 

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Hope, Inspiration, Quotes

how often do we fail to recognize them?

My Alzheimer's Story

Coauthor of A Pocket Guide for the Alzheimer’s Caregiver and one of Maria Shriver’s Architects of Change, neurologist Daniel C. Potts champions life-affirming care for those living with Alzheimer’s disease/Dementia and their care partners. His blog is here.

When I saw the above quote of his on Twitter (@DanielCPotts), I just had to create a meme with it. What a wonderful, mindset-changing sentiment which EXACTLY captures the importance of looking beyond and behind the condition to see the person that remains until the end.

The quote also joyfully reminded me of these moments with Mom as well as other reflections on recognizing and being recognized:

https://myalzheimersstory.com/2014/10/21/12-pinkie-patti-and-funky-punkie-pics-for-posterity/

https://myalzheimersstory.com/2014/04/03/mirror-mirror-on-the-wall/

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

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Care Partnering, Family, Resources, Tips, tools & skills

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

My Alzheimer's Story

It seems to me we sometimes get stuck on things that don’t matter, or aren’t as important as we think they are, and then we lose perspective.

Many people are devastated when their loved one with dementia no longer recognizes them. Very early on in the game, I got to a point where it didn’t matter one way or the other. I’ve rolled that around in my mind for a long time. I found asking myself questions like these helped; I thought they might be useful for others too:

20 questions to ask when a loved one who lives with dementia doesn’t recognize you

  1. Do babies recognize and call by name those who care for them?
  2. Does the fact that babies do not recognize their parents as individuals cause their parents to love them any less?
  3. What kinds of things do babies sense from those who care for them?
  4. Are those things contingent on babies recognizing who cares for them?
  5. What do I feel when the person I love who has dementia does not recognize me?
  6. What is at the core of my upset when my loved one with dementia does not recognize me?
  7. Is recognizing me going to make their life any better?
  8. Does not recognizing me make their life any worse?
  9. Do they not recognize other people, or is it just me they don’t recognize?
  10. Does it matter if they don’t recognize other people?
  11. How important is it for the people in my life who have dementia for me to “see” them?
  12. Based on the behaviour of my loved one with dementia when s/he doesn’t recognize me, does not recognizing me or others seem to cause them a great deal of lasting pain and/or suffering?
  13. How important is it at this stage in my life for her/him to “see” me?
  14. How important is it for people in general to be seen?
  15. If it is important for people to be seen, why is it important?
  16. If I don’t see and love the people who are close to me who have dementia, who will?
  17. What would happen if I let go of my need for them to recognize me?
  18. What does love mean to me?
  19. What does compassion mean to me?
  20. What is at the core of being human?

Please share this link with others if you think it might be helpful to them. You may also download a PDF here: 20 Questions to Ask Yourself When a Loved One Doesn’t Recognize You Anymore.

© 2015 MyAlzheimersStory.com All Rights Reserved

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

https://myalzheimersstory.com/2019/01/27/a-story-about-being-with-the-people-you-love-whatever-the-state-of-their-brains/

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Take my short survey on behaviour here.