Not-So-Expert Advice

It’s been a year since my last blog post. I’ve wanted to write many times this year (in fact, I have written, but I’ve never posted anything). I have a million reasons (excuses?) for not posting, but there’s one in particular I’d like to share (confess?):

I’m afraid I don’t have anything useful to say.

Before you tell me I’m a silly girl and of course everyone wants to hear my story in Show-and-Tell, let me explain.

I’ve written a good bit about my mother’s dementia in this blog, and I’d like to think I’m helping foster a better understanding of what dementia is and isn’t. I want to see myself as an activist-crusader for person-centered care, or an innovative care partner with new ideas to help make the world safe for people with dementia. I’ve even spoken at caregiving conferences, and I’m planning to do that again in September.

But.

Something new has crept into my caregiving journey with Mom: humility. Not that it wasn’t always there in some form; dementia has a way of knocking you off your high horse. It’s just that as the years go by, I find myself around people who are doing amazing work in the field of dementia awareness, people much better qualified than I am to be crusaders for the cause. People who are actual experts. People like Karen Love and Jackie Pinkowitz at the Demenia Action Alliance; Teepa Snow at Positive Approach to Care; and the many smart, generous, feisty people with dementia who are starting to blog about their own journeys. (Yes, it’s possible to have a dementia diagnosis and still blog.)

Topping the list of people whose writing I admire is Dr. Elaine Eshbaugh, a gerontology professor at the University of Northern Iowa whose blog, Welcome to Dementialand, is the first resource I would recommend to anyone, anywhere, who might at any time interact with dementia. In fact, I authorize you to stop reading this blog right now and head over to Elaine’s. Go ahead. You won’t be sorry.

Still here? Okay. I’ll tell you what I think I can write about, and maybe you’ll let me know what you think. (You can always check out Elaine’s blog later.)

I can write about my feelings, my observations, my personal experience of my own mother’s dementia. Though there are symptoms and behaviors that nearly everyone with dementia shares, I’ve come to understand that the way they play out varies from person to person, depending on their circumstances and relationships. All I can chronicle here is my own path, including the specific conditions of my daily life: a career in the arts, a marriage to my junior-high-school sweetheart, a 21-year-old offspring, a house in the suburbs, a cat, and a mother in assisted living.

I’m not a professional caregiver, working a stressful job in an understaffed nursing home; I’m not a harried working parent whose mother-in-law just moved into the guest bedroom; I’m not a gerontology professor. I don’t have dementia myself. Other people can speak eloquently about those situations. I can’t. Sometimes I can’t even talk about dementia; I need to walk away from it and pretend it doesn’t exist. However much I’d like to change the landscape of dementia care, I don’t think I’m cut out to be an activist-crusader.

Dementia has made its presence known in my life, and I’m dealing with it. I can share that. If dementia has shown up in your life, I can witness to the truth that you’re not alone. If it hasn’t, I can gently remind you that it probably will someday, and that when it does, you’re going to be humbled by it. And that’s okay.

Humility is a good thing. It’s one of dementia’s gifts, delivered periodically like a fresh bouquet of flowers, reminding us not to take life so seriously. We can’t all be experts. Let’s just be ourselves, shall we?

June Sparks, Mother's Day 2018

Mother’s Day, 2018

P. S. I really meant it — you should check out Elaine’s blog! I don’t know her, I don’t get any money from her, I just think she’s great. Here’s a post to get you started: Tips on Communicating in Dementialand. Tell me what you think!

8 thoughts on “Not-So-Expert Advice

  1. Hi Carolyn. I’ve checked back to see if you’ve written a number of times in the past year – hoping, hoping, hoping. I just thought to check again and here you are today :)! Your sharing has meant a lot to me as I journeyed through dementialand with my mother (yes, I’ve saved the link to Elaine’s blog to check it out!). I especially appreciate the ways in which you express your feelings, observations, and personal experiences – so tender and heartfelt no matter what the emotion.

    My mother died in March. Our last visit together consisted of her repeatedly opening and closing a music box her sister had sent for her enjoyment and oh, how she enjoyed it! Over and over and over again. We also had some very challenging times in our journey but I am ever so grateful that I got to be there with her, challenges and all, and that you and others who have also travelled this path were there with us, whether you knew it or not. Thank you ❤️

    Joanna

  2. Carolyn, I think your sharing of your experiences and feelings is more than enough, regardless of whatever level of “expertise” you do or do not claim. Though my parents don’t suffer from dementia, (though my mom is not very lucid anymore), both of them are struggling in the day-to-day. I think of your journey often as I settle into the next stage of mine and take heart in your humanity, empathy, and effort to make sense of it all. I say that to say, keep sharing if you feel compelled to do so. I welcome your wisdom and honesty with an open heart. And I very much feel like you do in regards to my writing: who cares, I have nothing new to say, no one is reading, I should put my energies elsewhere, etc. But then I do it anyway, at least sometimes. I encourage you to do the same, as life and the muse allow. Love you.

  3. You know what Carolyn? You are an expert. Maybe not in Dementia care, maybe not in the science of the brain. But you ARE an expert, and a professional, in communicating all the minutiae and vagaries of being a human. More than many others, as this blog shows, you have an emotional self-awareness and honesty that transcends the abilities of many arts professionals. Thank you for that, and I’m glad to see this post. Keep blogging! About anything you want to. No foolin’.

  4. Writing your journal of love for us to read is like making a scratch meal for a family to eat. Sure, the practical results can be compared to commercial alternatives, but that’s not why you do it. We’re here not merely for the food. Which, by the way, is delicious. Thank you!

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