When Dementia Changes Personality (and Why Sometimes That’s Not All Bad)

A college friend of mine, Holly, reached out to me recently about her grandparents, Nina and Del, who had just moved into assistant living. (I’m changing their names here because Holly worries about what her family might think of her perception of the situation.)

Nina has Alzheimer’s, and Del has a disease that caused paralysis in his lower body. Neither were excited about the move, but Del knew that his physical limitations meant he couldn’t care for Nina at home any longer.

I remember Nina coming to visit the residence hall often. What I remember about her is that she was one of those people who had an opinion. Anything you talked about—she had an opinion. It didn’t matter if she knew anything about the topic.

I have one vivid memory of Nina visiting our residence hall. It was during the Clinton impeachment, and she had opinions. I kept trying to delicately change the subject. It didn’t work. Holly and I laughed about it after.

On a different visit, Nina unclogged the sink in my dorm room. Then she gave me a stern lecture about how to avoid getting that much hair in my sink again. Her suggestion? A haircut. She told me my hair was unnecessarily long. In my defense, it barely skimmed my shoulders.

In appearance, she was “simple.” And I don’t mean that she wasn’t attractive. It was just that she limited herself to the bare minimum. Jeans. A t-shirt. Nothing frilly. Her hair was cut short, almost in a buzz cut. She wore no makeup and no jewelry. There was nothing unnecessary about her appearance.

Holly went to visit her grandparents a few weeks after they had moved into assisted living. She went to their room, and Del gave her an exasperated look.

“Wait until you see your grandmother,” he warned.

And just then Nina walked in…in full makeup. And full might be an understatement. Perhaps extraneous would be a better description.

Black liquid winged eyeliner. Bronzer that made her look somewhere between sun kissed and orange. Eyebrows painted on. And the lipstick.

“What do you think?” she asked excitedly. “I feel BEEE-YOU-TEEEE-FUL.”

Once a month, the assisted living hosts a group the female residents call “the beauty shop girls” once a month. They’re students at a local cosmetology college and volunteer their time to do makeup and nails for the residents.

Del told Nina it wasn’t something she’d enjoy, but a few female residents came around to invite her and away she went. Del was convinced she’d be back in the room in a few minutes…once she figured out that this activity wasn’t for her.

One of the cosmetology students asked Nina if she liked to wear make up. She said she had never tried it.

When asked if she’d like to try it, Nina told the student, “Yes, do it like yours.”

And so she did. Nina ended up with the trendy make up style you might expect to see on a college student going out for a night on the town. She was so proud.

Despite her stopping to look in every mirror to admire her new look, Del was not impressed. He kept telling her that she didn’t wear makeup. He even told the staff that she shouldn’t be invited to this event next time.

When staff told him how much she seemed to enjoy the makeup, he said that he didn’t care.

“She wouldn’t want this,” he kept saying. “She’d be embarrassed.”

She participated in a few other events that she would have had no interest in before. She did crafts…which her family found ironic because Nina had always said that crafts were for people who didn’t know how to do real useful things with their hands. She sang along in the music activities, something she wouldn’t have been caught doing years ago. She even did the hand motions that went along with the songs.

Del kept saying, “She doesn’t do this. It isn’t her.”

The family was frustrated that Del couldn’t see that she enjoyed these activities. He told everyone she’d be embarrassed if she could see who she had become. It wasn’t her. 

Del was prepared to the memory challenges that Nina’s diagnosis would bring. No one told him this would change her personality. No one told him she’d be doing things she wouldn’t have been caught dead doing just a few years before.

A few family members from out of town came to visit. They hadn’t seen Nina for a couple years, and they were stunned at the progression of her disease.

But there was something else….they liked the new Nina (as they referred to her). Nothing against the old Nina, of course, but new Nina had a certain lightness and joy about her.

Old Nina and new Nina had some things in common, but it was apparent that they were different.

To my friend, loving her grandma meant letting go of the old Nina. The family adopted that terminology…new Nina and old Nina. I’m not sure I would suggest using that terminology, but it helped to free them from comparing Nina to who she was in the past and accept who she is now. It helped them to accept that Nina had changed.

The new Nina is open to wearing winged eyeliner. She has fun doing elementary craft projects. She convinces everyone to join in the sing along. She dances. And—although she had never let her family have a dog because she just didn’t like them–she has become quite attached to the dog who lives at the assisted living. Yes, new Nina is dog person.

New Nina gets confused. Sometimes she wanders the halls looking for family members who have passed away. She struggles to remember why she lives in this place and where her family is.

But most of the time she seems happy.

My friend confided in me that new Nina is in some ways more likable than old Nina. Old Nina criticized her for not having a clear career path. New Nina tells her she is beautiful and can’t remember what she does for a living. Old Nina made strong and sometimes rude criticisms about her parenting. New Nina just giggles with her kids.

Holly took Nina to get a pedicure, which they both enjoyed. One day they went to a paint-your-own-pottery place, and Nina excitedly painted a dog dish for the dog at the assisted living. 

“Is it bad that I enjoy being around new Nina more than old Nina?” Holly asked.

She didn’t say she loved new Nina more than old Nina.

There’s nothing wrong with enjoying the person in front of you right where they are in that moment. Black eyeliner and all.

Del isn’t there yet. He needs old Nina. That was his Nina, and he’s not interested in getting to know a new one.

I can’t blame him. I can’t imagine how hard it is to see your partner change so dramatically.

But I hope he comes around. New Nina sounds fun, and I don’t want him to miss out.

 

 

 

 

6 thoughts on “When Dementia Changes Personality (and Why Sometimes That’s Not All Bad)

  1. How wonderful that Nina seems to be enjoying her new life, and how hard for Del; as much as most people seem to prefer the characteristics of the new Nina, he fell in love with her old characteristics – yes, she is still Nina, but not his Nina 💏
    I am at the point where I can still recognise my out of character behaviour. I have become much more talkative and outspoken, as my dementia progresses. Sometimes I like it, as it has a sense of freedom about it, but other times I hate it, as I am embarrassed by it. I love that people laugh at my jokes now, and recognise my “naughty schoolgirl” behaviour, as the laughter encourages me forward, sometimes not knowing when to stop. I often wonder how it will be when I stop recognising these changes (and other aspects of the dementia that create frustration) or if you ever really stop recognising them, but can’t do anything about it?????

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  2. How wonderful for Nina that she is having such a blessed time these days. I hope Del comes around and accepts this shift in Nina’s personality. He should be grateful she’s still there with him, even if she’s different from the Nina he fell in love with. Underneath the eyeliner, it’s still HIS Nina.

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  3. I recall when my Dad was in his last days. Sometimes his blood sugar would get out of order and he would talk with such clarity. He talked about things he was going to do, or did, and what I would be doing. He talked about getting a car that was broke down. He told me that I would be driving it home after he fixed it. I liked and enjoyed hearing him speak of life. Otherwise he was just old and didn’t have much to say. I preferred talkative, outgoing Dad. The one I knew when I and he were young. Sometimes being sick can make you better. Thanks for the story.

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    1. Your comment about your dad talking about buying a car and fixing it up resonates with me. My husband has Alzheimer’s related dementia and one day he excitedly said the same thing, that he wanted to buy a clunker car and fix it up. I quietly asked him how would he drive it when he no longer drives our own car. I may have been cruel to put it that way, but he’s also talked about buying a motorhome when I know our traveling days are over. Breaks my heart… thank you for sharing.

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  4. Nina’s story brings up interesting ideas about one’s “self”: am I the same person I was at age 5, or 15, or 35, or 45? Does a secular or religious or political “conversion” change the self? Can a disease status change who a person is? What about the role and response to experiences, good and bad? And do we ultimately have a choice in who we seem to be to other people?

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