alzheimer's, dementia, dementialand, nursing home

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

27 thoughts on “Positive Things in Dementialand”

  1. Well, this is a bit late, but HAPPY BIRTHDAY, Elaine! I read your blog regularly and I love it. I think you capture the experience of sharing life with friends who have dementia better than anyone else I know of. I’m glad you write. Thank you, and enjoy your 40s! (A great decade, if memory serves . . . )

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  2. Happy 40th Elaine! You are beautiful both inside and out! I love the way you write as it’s from the heart and your passion for people shines through with every post. My mom has alzheimer’s and I visit often. It is interesting how best friends are formed there and I love to see and think about it as you have done so well in this post.
    Keep shining and doing all that you do! You are making a difference in so many lives! I’m grateful we connected! Enjoy every moment of your birthday! 40 is a wonderful age and it keeps getting better. I should know, I just turned 50 this year! LOL ♥

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  3. Happy happy birthday and thank you for sharing your heart and your wisdom with us. I just turned 45 a couple of months ago, and after 3+ years of caring for my mom full-time and 4 more years of part-time caregiving, I feel like I know WAY more about Alzheimer’s and other dementias than most people my age. I just assumed that you must be way older than me because you were so incredibly knowledgeable–it seemed like you had at least 40 years of experience! I just assumed your photo was a really old one! 🙂

    Again, happy birthday and thank you for helping to keep us positive!!

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  5. Facing 40 was the scariest age for me. It felt like something big was going to magically happen when the ill-fated day arrived. However, no major changes occurred and life kept going. Facing 60 now, I see how young 40 still is. I enjoy your blog posts and always take the time to read them. They validate and inspire my advocacy for people with dementia and help me remember all the years I spent with my mom and aunt in assisted living, memory care, and skilled care. I had worked as an activity director in a memory care unit when my grandmother had dementia and cared for her as well. Life in dementia land is where I am fully myself. Beth @caregiversunite.org

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  6. Thank you for sharing your experiences in dementaland! You are a ray of sunshine and a positive boost in my day. I am forever grateful for you and your continued work; I don’t feel as though I have been forgotten as with the rest of the world. Thank you so much, Elaine! ❤️

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  8. Thanks Elaine for all you do. Sadly, I lost both parents this past spring and summer. Mom’s dementia had been going on for the better part of 10 years. Reading your blog helped me interact with her in ways that helped both of us. I no longer felt the urge to correct her and realized that just appreciating every day and being a nice stranger that visited her was really enough. Thanks

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  9. I receive your newsletter because my granddaughter sent a copy to me and I asked to receive it every month. My granddaughter. Mallory Hymes, got some of her training at UNI graduating with a degree in Gerontology in May 2016. I say “some” because she worked at Friendship Village Assisted Living for 2 years of her 3 years at UNI. She also learned a great deal from her internship. She has great interest in Alzheimer’s Research along with her love for all elderly. Mallory says they are her “peeps.” Upon graduation, Mallory immediately became the Administrator at Tripoli Care Center and there is nothing like on-the-job training. It was the best job for her…at a small facility like Tripoli she got instant training in the ever-shifting world of Medicaid, in employees calling in sick with no one to call to substitute, employee relations, and what to do with half a care center’s residents when a boiler goes out and half the care center is without heat on a 20 degree evening and it won’t be fixed until at least morning. Why, one just calls other care centers nearby to see how many empty beds they have. I have a picture of Mallory’s car packed to the brim with walkers and wheelchairs that she took to other centers for her residents. At Tripoli, Mallory was 4 hours away from home and her boyfriend. She wanted to move closer, so she started looking after a year at Tripoli. She was hired at Sunnybrook Assisted Living and Memory Care in Burlington as the Executive Administrator this past August. This gives her perspective in assisted living once again and in memory care. She and others took 12 residents to Harvestville Pumpkin Patch last week, 9 of whom were in Memory Care. I asked her how that was, and she said it went fine. In fact, she said “I love my Memory Care residents. They know how to have fun and often boost me up on any given day. They may be the most honest people on the planet.”

    This next Thursday, I will start a small poetry group and we will meet in Memory Care, one of the members lives there. I have read her writing in the past, and I can’t wait to see what she writes now.

    Thank you for whatever part you had in this 22 year-old’s learning while she was at UNI. She is doing all right.

    Karen Osborne

    Elaine M. Eshbaugh, PhD posted: “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 comp”

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  10. Thank you Elaine for writing your blog. It certainly teaches me and I love learning. As you turn 40 this week remember to take that moment to step outside to see and smell the beauty around you. I turned 65 yesterday and who would have thought that. It’s a number that we can’t control, so live each day as it was the first as we never know not what’s ahead.
    Keep on writing this blog and teaching us as we thrive to learn new things each day.

    Happy 40th youngster🎉

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  11. Your positive thoughts were just what I needed this morning. Thank you. It is SO easy to get bogged down by the day to day trials of dementia care. Lately, I haven’t been able to find the laughs. I’ll look harder today, thanks to you. Happy birthday — 40? Your best years are still ahead.

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  12. Elaine, you ROCK!! I only recently subscribed to your blog but I just love your quirkiness and your advocacy. This is my favourite post so far, because I really identify with the blessing that people living with dementia can be. After mum died last year after living with dementia for about 15 years, I dedicated my nature solos to her for a few months. I wrote a bunch of poems called her ‘dementia blessings’. And there were lots of blessings … she was my wise woman to the end, and her journey was a big part of my own transformation. Here’s one of the poems as a happy birthday gift … http://heartofnature.co.za/heartofnature/2016/05/15/my-wise-woman/ – Hugs to you as you enter a FABULOUS decade.

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  13. If only I lived closer to you, I’d be inclined to take some of your classes and work on another degree. I look so forward to your weekly messages. Your encouragement and insight make my journey as caregiver much more tolerable. Don’t sweat 40. I stressed about 50 last year, and honestly, it’s just a number. You are beautiful inside and out. Happy Birthday Elaine.🎉🎈🎁

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  14. Have a great birthday, Elaine! I’m a big fan of your blog – you hit just the right note, funny, perceptive, articulate – and helps me feel better about my own plight as caregiving spouse.
    Thanks!

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  15. Thank you for your uplifting thoughts! I teach as well…nursing students across the board, from pre-licensure to post-docs. Love ‘em! On another note, my colleagues and I are wrapping up a study about advance care planning. We included people with mild to moderate dementia. To my knowledge, we are the first to do so!! Keep on blogging’

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