Passion in Dementialand (A Post About What Gets Us Excited)

A little passion goes a long way.

I’m not talking about relationships here. I’m talking about life. No one has passion for everything they do. We all have to do things that we don’t like doing. That’s part of living in the real world. But we gotta have passion for something or we’re sunk.

My passion is dementia. I don’t like dementia itself. In fact, I really don’t like dementia at all, but I get excited (maybe I should say “fired up”) about educating people about dementia and raising awareness. I cannot count the number of times I have been at a party and was engaged in an intriguing conversation about dementia with someone I had just met–except I was the only one “engaged” and probably the only one who found it “intriguing.”

My husband once joked that we might get invited to more social gatherings if I talked less about dementia. Or maybe he wasn’t joking. Someone once told me that everyone should be passionate enough about something to talk about it enthusiastically for a ridiculous amount of time at a party while boring everyone else in the room. Yep. I can do that.

When someone stops me at Target to ask a question about dementia and I don’t abandon my cart immediately to chat, there is a problem. You should worry about me. Maybe you should even considering planning an intervention of some type–because something’s not right.

I get excited about things other than talking about dementia. A part of me wants to tell you I’m passionate about classical music, art history, and expensive red wine, but I’m not. I’m passionate about college basketball, perfecting recipes for low-cal margaritas, and cheap white wine. (I’m known for buying wine on a clearance end cap at Walgreens. In my defense, our Walgreens has an underappreciated selection of alcohol.) And although these passions may seem less than refined to some, there’s no reason they are less valid.

Maybe you get the same feeling from listening to a full symphony that I do when someone on my team makes a three-pointer or takes a charge. It doesn’t really matter what triggers that feeling, as long as something does.

You may not be as passionate about this dementia stuff as I am (or maybe you are because you are reading this blog) and maybe you don’t like college basketball or cheap wine, but my wish for you is that you are passionate about something. For my stepfather who is a retired forester, it’s trees. If he ever shows up at our house and doesn’t sniff our trees to assess their health within an hour of arrival, I’m worried. One of my mom’s most interesting and notable hobbies is tie-dyeing. If you’ve seen pictures of her, you should know she tie-dyed those t-shirts herself. If I ever get out her tie-dye supplies and she says she’s not really interested in tie-dying, there’s an issue. I’m not saying that issue is dementia, although it could be. It might also be depression or perhaps another medical issue–or maybe just a simple rut. But I’m gonna wonder what’s going on.

When we think of dementia, we think of loss of memory. However, the more time I spend with people who have dementia, the more I realize that loss of passion (more than loss of memory) triggers hopelessness. If you wake up in the morning and have something to be excited about–no matter how big or small it is–there’s hope.

When I think about the individuals I know with dementia, I see many that have held onto a passion or developed a new passion. I know a guy who struggles to remember his wife’s name, but when he’s told that the St. Louis Cardinals play tonight, he’s excited. There’s a woman with Alzheimer’s who used to be a master gardener. She still finds joy in watering the flowers at the adult day center she goes to five days a week. And then there’s the family that tried to stop their grandma from reorganizing her closet every single day–because she had just done it the day before. However, organizing was her passion. It’s what she was excited to do when she woke up in the morning.

I find that families sometimes try to shut down the passions of their loved ones with dementia. Maybe they don’t seem purposeful or legitimate. Maybe they aren’t the same passions that the person had ten years ago. But here’s the thing…and this is advice that works both in and out of Dementialand…

We are not qualified to judge the validity of someone else’s passion. 

I have a friend who is a member of what we call the “sandwich generation.” She is sandwiched in caring for her mother with Alzheimer’s and her young children. One day she noticed her daughter and her mother playing together in the sandbox at a park. At first, she thought about how it looked like a typical grandmother-grandchild interaction. Then her young daughter left the sandbox, and grandma stayed there–playing like a child. My friend sat sitting on a bench, watching her own mother play in a sandbox all alone. She wasn’t quite sure what to think. Then she realized her mother was smiling as she sculpted pictures and designs in the sand with a rake.

You rarely see adults playing alone in sandboxes at city parks, so my friend was not entirely comfortable with this. However, as she thought about it more, she realized it really wasn’t all that different from a monk in a Zen garden raking sand as a part of their meditation. The more I thought about it, the more I realized that playing in a sandbox is no less valuable than how I spend my free time–watching college kids try to put a ball through a hoop.

She kept bringing her mom and her kids back to that same park. She learned to ignore the people who stared at the smiling woman raking alone in the sandbox.

We are not qualified to judge the validity of someone else’s passion. 

I have a lot of friends (both with and without dementia) who have passions that I don’t really get. I don’t have to get their passions to support them in pursuing their passions. And it doesn’t matter what they get excited about as long as they get excited about something. And who am I to say what they get excited about doing is any less valid than what I get excited about doing?

Because of the impact dementia has on the brain, people with Alzheimer’s and related diseases may become apathetic. Often we say someone has “given up,” but that’s not really the case. It’s an actual symptom. The less scientific explanation is that the part of the brain that control motivation and excitement is damaged. Sometimes I will see someone who has “dimmed.” They can’t get interested in stuff that used to interest them–and they can’t find anything to replace those interests.

People who struggle to remember and understand their surroundings may find it hard to be excited about much of anything as dementia progresses, but there are cases when passion remains although memory may have declined. And when that happens, there is a sort of beauty that amazes me.

I often think of a woman who told me about her mother with dementia that didn’t remember she had grandchildren. Her mother eventually moved in with her family and every single morning would seem a little bit surprised to see a couple of small children in the kitchen. When the kids would call her grandma, she would be over the moon–as excited as, well, a new grandma.

“Oh my goodness!” she would exclaimed. “Are these my beautiful grandchildren?”

She didn’t remember she was a grandma, but she still managed to be pretty passionate about it. The most amazing part of this is that her family chose to focus on her passion for being a grandma rather than her need to be reminded everyday that she was a grandma. Rather than being sad that she didn’t remember her grandchildren, they focused on the look of excitement on her face when she realized those grandkids were her grandkids. It was her enthusiasm that allowed them to cope with her loss of memory.

A little passion goes a long way.

3 thoughts on “Passion in Dementialand (A Post About What Gets Us Excited)

  1. 1. You really write well, Elaine!
    2. That lady that has a passion for organizing? I would offer her a home with me and my husband for a while…
    3. It freaks me out to hear you talk about college “kids” – I still think of YOU as a kid! (Sorry.)


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