Dementia and Dignity

“Hello? Hello? HELLO?!!!”
“Mom, that’s the remote control, not the telephone.”
“It is?  Oh, I’m so stupid.”

“Your father will be home from work in a minute and I need to get this place tidied up.”
“Mom, Dad died last year, remember?  ”
“He did?  Oh …  that’s right,” and she bursts into tears.

Coping with a family member with memory loss can be sad, exasperating and draining for you and for the person with dementia.  While a person with dementia may not remember facts, their emotional reactions are often as strong as ever and can last long after they have forgotten the reason for what they’re feeling.

Dementia in Your Loved One

For you, it can be devastating to see a person who looks like your loved one, but with whom you can’t share your old jokes, ask advice or discuss the news of the day the way you used to.   It’s almost like an imposter has taken over the body of the person you love.  You end up grieving their passing while they are still alive.

I wish I had a solution that could restore your loved one back to you.  But doctors, scientists, and family members have spent decades trying unsuccessfully to do that.  What science tells us now is that recovery in a person with dementia isn’t possible, because parts of their brain have wasted away.  It isn’t their fault any more than diabetes is the diabetic’s fault.

This can be hard to accept, because for most of our lives we have felt considerable control over what we think.  When we were young we only needed to concentrate harder or try again to memorize a homework assignment.  But just like a person can’t concentrate harder to make a pancreas produce more insulin, your mom can’t concentrate harder to make her brain work the way it used to.  Continually correcting and “educating” a person with dementia leads to embarrassment, sadness and frustration, even anger.

Join their World

Experts now belief that the best way to interact with demented people is to meet them in their own world.  For example, in her later years my mother’s inner life veered far, far away from what I believed to be reality.  One time she told me on the phone what a wonderful time she and her new husband had been having.  Now according to my reality my mom lived in a secure memory care unit, and the likelihood of her having remarried without my knowing about it was pretty remote.  But she was happy, so I went with it.

“Oh my!  I didn’t realize that you had gotten married again.”

“Yeah, we’ve kept it pretty quiet.”  

 “You sure have!  But I’m glad that you’re telling me about it now.  What have you been doing together?”

“We’ve been going on road trips to see national parks.” 

“How nice.  You’ll have to go up to the Shenandoah Mountains this autumn when the leaves turn color.”

“Um, yeah.  I’ll tell him.”

We had conversation variations on this subject a number of times.  One time I asked her, “What’s your new husband’s name?”

The first time she said, “Martin,” which happened to be my late father’s last name. I thought how nice that she is imagining someone like my dad as hercurrent partner.  Another time she told me his name was, “Raul,”  which happens to be MY husband’s first name!  I guess she had pleasant associations with that name too.

Tea for Two

A gerontologist once told me about going to visit his mother who lived in memory care. He had told her the day before that he would be coming at 11 am, but when he arrived on time, she was angry with him for being late and not having called to tell her.  “I was so worried about you!”

Instead of defending himself which would have involved forcing his reality onto her, he chose to describe how tough traffic was and how he didn’t want to stop to call and be even more late.  She was mollified and they went on to discuss how tough traffic can be.

You might think that this is giving up on the person; but no one would criticize you for playing along with a toddler who was having a conversation with a pretend friend.  If your toddler wanted to have a tea party with the Queen of England (represented at the table by their favorite Barbie doll) you’d happily pick up your empty teacup and sip air. Right?

Contrary to Joe Friday, in this case the facts become less important than simply finding emotionally fulfilling ways to be with each other.  In the end, it is our connection with the people we love that really matters.  So use the flexibility and creativity of your own mind to reach out and join your loved one in their world.  Make the time fulfilling for both of you.  It’s not the thought that counts, it’s the feelings.

 

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