Positive Things in Dementialand

Dear Friends,

I don’t know how you’re feeling lately, but the world has me a bit deflated. Hurricanes and other natural disasters. Mass shootings. Arguments about the national anthem. I could go on, but unless you live under a rock, you can probably complete your own list.

So here I am…searching for a way to be positive. Maybe you are in the same boat.

Today I’m all about the positive. Dementia itself certainly isn’t a blessing, but my journey in this field has brought me many heartfelt moments, much joy, and a lot of laughter. I need to take a moment to focus on those blessings.

Let me start here.

Last Saturday I was the emcee for our local Walk to End Alzheimer’s. Beautiful day. Great turnout. Lots of money raised. To me, one of the most impactful parts of the morning was seeing the number of people with Alzheimer’s who came out to be a part of the event. It’s not always easy for people with dementia to deal with the crowds at a walk with over 600 participants.

They do it anyway.

A gentleman with Alzheimer’s even took the mic to talk about his experiences. I struggled a bit with the echo of speaking from a microphone on the pitcher’s mound of a minor league ballpark. This guy put me to shame. His heartfelt speech left me in awe.

I’m extremely grateful for his willingness to speak. People with dementia and their families have been silenced too long. I am seeing a huge increase in the number of people who have dementia and are willing to step forward and participate in advocacy. Sure, it’d be easier to stay home and live life, but more people are choosing to put themselves out there after diagnosis and not be silenced. They do this not because their advocacy work will result in a cure that will benefit them. They know it won’t. They challenge themselves to make a difference for future generations.

To those of you who have dementia and tell others about your experiences (whether it’s on Facebook, through a blog, at a fundraising or legislative event, or sitting with friends at a coffee shop), you are awesome. Thank you for what you have taught me. I understand that I don’t know what you’re going through. Keep telling me. I’ll never fully get it—unless I have dementia in my future, but learning about your experiences makes me a more effective professional…and a better person.

Until we find a cure or prevention method, I will brag about some of the college students in our gerontology program who want to make a difference in the lives of those with dementia. Last week my online students had to watch a documentary that focused on elder abuse. I received an email at 11:00 pm last Friday night from a student who apologized for emailing me so late but really wanted me to know how disgusted she was by the elder abuse documented in the film. She said she wasn’t sure if she was going to be able to sleep because of the images that she couldn’t get out of her head. And she thanked me for exposing her to this social injustice. The documentary had reinforced that she was headed into the right field. (FYI–If you are a college student who wants to make a professor’s Friday night, thank them for giving you an assignment.)

If you worry about this terrible self-absorbed Millennials generation and fear for our future, stop. Sure, some young people have misguided priorities and don’t care about anyone except themselves. This is not unique to Millennials. (Haven’t we always felt like the current generation of 18-24 years olds was going to ruin the world—no matter what year it was?) Please know that I have college students who care about older adults and want to spend their careers making a meaningful difference in the field of gerontology.

One of our gerontology majors is currently living at a local assisted living facility as part of a Students in Residence program. He adores the residents, and they adore him. I wish you could see how this student lights up when he talks about spending time with his neighbors at the assisting living. He sees living there as a privilege, and he’s found the sense of purpose in life that he’s been missing. Forget the generation gap. We’re all just people. Some of us have just been here longer.

One of the greatest sources of encouragement I have in my life is individuals living with dementia. I know that dementia can make people disagreeable and even aggressive, but the majority of my interaction with people who have dementia is overwhelmingly positive. To be fair, I’m not the person who must insist individuals take a bath when they don’t want to and take medication they think they don’t need. When I spend time with people, the purpose is to spend time with people.

There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.)

In fact, I was recently at a nursing home where two women with Alzheimer’s sat by the nurses’ station holding hands. An employee explained that one was a mom of six with a grade school education and the other was a never married lawyer who broke gender barriers by being the first female attorney in her area. Day in and day out, they sat together holding hands and exchanging smiles. They never talked to each other (or to anyone else, for that matter), but were best friends nonetheless. I wondered if they would’ve been friends 40 years ago. They had little in common. Somehow, at this point in life, they brought each other comfort. I’m not sure I know of a more genuine friendship. Life has this funny way of bringing people together.

People with dementia tell me that I’m pretty, that I have a nice smile, and that they like my haircut. If I wear heels, I can be sure somebody is going to comment on my fancy shoes. A while back, a woman living at a memory care community literally chased me down the hall yelling, “You’re so good at your job, honey!” It took her comment to heart, even though I know she had no idea what I did for a living. I’m not discriminating about accepting compliments. In fact, I went back to the office with a little extra swagger.

They don’t care if there are three baskets of laundry in my laundry room that I haven’t had time to put away (or maybe I have had time to put them away but am just lazy). They don’t ask about that report at work that’s due in a week that I haven’t started yet. People seem to think I’m some kind of saint for spending time with people who have dementia. Au contraire. I feel like I’m tricking the world…my friends with dementia are good to me.

Every once in a while there is a comment that’s inappropriate, but that’s a rarity. A while back someone mentioned that I had gained weight. I wasn’t offended…it was a true statement delivered purely as an observation with no judgment attached. I was actually rather impressed a guy who couldn’t remember his wife’s name remembered me well enough to identify I was carrying an extra ten pounds. Good for him.

I turn 40 this week. To be clear, this is not one of the reasons I’m struggling to remain positive lately. I’m fortunate to be healthy and live an imperfect but good life. Complaining about turning 40 would be disrespectful to all the people I’ve known who never made it to 40. Last week I walked into an adult day center that I visit and found that they had made me an entire stack of homemade birthday cards. Is there anything better than a homemade card? The only problem is that there isn’t room for all of the cards of my fridge.

Finally, I am grateful for those of you who regularly read my blog. There is something that is still a bit scary about putting myself out there. Are people going to think this idea is stupid? What if they think I’m trying too hard to be funny? Worse yet, what if I accidentally say something that is misunderstood and offends my readers? I’m less confident than I sometimes seem. Thank you to those who subscribe and reach out to me with positive comments. I’d like to say I’m not dependent on the approval of others, but I would never have kept writing if it weren’t for you.

If you’ve read to this point, I thank for indulging me and should let you get on with your day. I’ve realized this blog post wasn’t really for you. It was for me. And I feel a little better.

As my mom once commented, “This world is messed up. But I’m happy to be here.”

I’m ready to ring in my 40’s.

XOXOXO,

Elaine