Next Generation Alzheimer's

05/02/2024

Several months ago, I was asked to join the podcast Love Takes Action to talk about the book I'm researching/writing -- Next-Generation Alzheimer's.

I'm grateful to host Ellen Adair for asking me so many of the RIGHT questions about that book and what I'm learning in this journey, as a daughter, storyteller, and human.

You can listen to the episode for free on Spotify (linked below) or wherever you listen to podcasts.

I am still interviewing people for the book -- if you are, or know someone who is, a child or grandchild of a person diagnosed with Alzheimer's, I'd like to talk to you.

Message me for more info on that. Thanks for listening and sharing!

Listen to this episode from Love Takes Action on Spotify. Katie Parsons, a writer, performer, and storyteller from Satellite Beach, FL, challenges stereotypes surrounding dementia and Alzheimer’s and fosters a sense of community for families navigating the disease. Learn more about your ad choices...

14/05/2023

For the children and grandchildren grieving a mother or grandmother suffering dementia - I’m holding space for you today.

Tonight, as I read a book in my car, waiting for my daughter to finish a music class, a single lilac bloom floated through my slightly-cracked car window and landed on my passenger seat.

My Mom’s two favorite flowers are irises and lilacs — and her favorite scent, natural and artificial, has always been lilac. This tiny bloom immediately filled my car with that fragrance and I had an immediate urge to call my mom. Well, to call my dad who could put his phone on speaker so I could loudly wish her a Happy Mother’s Day.

So once my daughter returned to the car, that’s what we did. Even through the muffle of speakerphone, I could hear her joy at hearing my voice. Even if she didn’t know it was me. Even if she didn’t know why.

Today is hard for many people, for many reasons. I know the pain of missing our living, breathing mothers and grandmothers and I’m sending you love today if you do too.

24/09/2022

💟 What good will a walk really do?

I wondered this when I saw ads pop up on my social media to sign up for our local Walk to End Alzheimer’s through the Alzheimer’s Association.

Rationally, I know these events raise important funds and awareness but I was feeling hopeless. Helpless. Cynical.

But then my friend Jenora, whose own mother is similar to my mom in age and going thru the Alzheimer’s journey in a similar way, said she was going to walk it with her kids — and invited me and my family to join.

And all of the sudden it felt like there was some purpose to the walk — because it was a way to support someone besides myself. With the craziness of other activities, only my daughter Erinn was able to come and her energy renewed my hope for my own mom and for myself one day.

I ended up running into other friends and colleagues at the event that I had not expected to be there - whose own connection to dementia I had not known before today.

And suddenly the walk that seemed pointless had more meaning than I’d ever expected.

I was reminded that we are all in this fight together. We get to carry each other. And that’s the point. 💟

15/09/2022

A few days before thanksgiving, my parents were in a bad car accident. My mom was injured pretty badly, including a gash near her forehead that required stitches.

Because of her Alzheimer’s , she kept scratching at the wound. Trying to leave her hospital room. Taking off her clothing when she was too warm.

My dad, her primary caregiver, couldn’t be with her in that hospital room — and I flew up from Florida. When I arrived at the hospital, the staff wanted to release her, despite scans and tests still inconclusive on the severity of her injuries. I asked what the rush was and a nurse told me frankly: we don’t have anyone to babysit her.

While I appreciated this honestly, and said I’d stay by her side until she was truly ready to check out, I was also angry that this hospital seemed to have no care plan in place for people with dementia who were critically hurt.

There weren’t enough “babysitters” to go around.

So I did the unpaid work of keeping my mom safe in that hospital space until I was sure she was physically ready to be at her own home.

Soon my dad joined us at home. I cooked an abbreviated thanksgiving meal & got to spend time with my brothers & nieces.

After that dinner, about one week following the accident, my mom sat so close to me that she was almost on my lap. She talked to me about the great thanksgiving meal her mother had just made (I was ok sharing that credit). We held hands. I looked at the gash on her head & felt grateful that the sticky, crusty scabbing showed it was healing. She was going to be okay - or at least as okay as she was before the accident. And though it was small consolation, I was relieved she didn’t seem to remember it or be exhibiting any signs of trauma or anxiety.

I took this picture with the bruise on her head cropped out, so I could remember this moment of happy conversation without a wound in it. I tell this story now because it’s a reminder that we don’t have the systems in place to care for our loved ones with dementia yet - this is evident in my example and in so many others shared with me since I started really researching dementia and its societal impact. We can do better. Let’s do better together.

21/08/2022

When we add children to our families, one piece of advice is always “Take lots of pictures because they change so quickly.”

I, admittedly, have followed that advice to an extreme degree. 📸

And now, I’m applying that advice to time with my mom, particularly since her early-onset Alzheimer’s diagnosis. She is changing rapidly, too, and I only see her every few months.

She’s now shorter than me for the first time in our dual existence. Her hair has turned it’s natural shade of silver. She weighs 30 pounds (and counting) less than she did a few years ago.

And each aesthetic physical change is different, and likely different than she would otherwise choose.

But like a mother looking at her newborn baby, she’s the most beautiful version of herself I’ve ever seen.

That being said, not all of the physical changes associated with dementia long term are good ones, or these simple. And it’s important to acknowledge that some of those are difficult to process and difficult to manage as loved ones and caregivers.

It is okay if we can’t simply accept all of them or if we grieve the changes.

But take pictures. They won’t be the same people tomorrow. ❤️

19/08/2022

When it’s over 80 degrees outside but Mom wants to sit in a lawn chair in a flannel shirt — so you just bring some extra ice water along.

As many of you know, I live 1,200+ miles from my mom so I am not part of her everyday caretaking. I try to fly up and spend a few days with her, and give everyone else a break, every few months or so.

Usually she doesn’t know who I am. But she’s always willing to sit with me. Get in the car with me. Go for walks with me. She’s familiar and comfortable with me — even if she isn’t sure why. And that’s enough.

Because of this distance, changes due to the progression of her Alzheimer’s disease are very apparent to me. I try to take notes on the changes I notice.

But more than anything, I try to just be fully with her. To say “tell me how you want me to help” to my dad, brother and her other caregivers. I try to continue making memories and letting her know she is loved, cared for and safe.

I just arrived this morning and already she has me laughing at the neighborhood squirrels with her. There’s a breeze and we’re both happy. And that’s enough, too.

08/08/2022

The lifetime costs for treating and caring for loved ones with Alzheimer’s disease and other forms of dementia is staggering — and rising.

These figures don’t even include the unpaid work of caregivers, which further cascade if spouses have to retire early, adult children have to reduce their work hours and other direct hits to income.

It’s not enough to treat dementia when symptoms begin. It’s not enough to accept it as a normal part of aging (it’s not). It’s not enough to expect families to carry the financial and emotional weight of dementia without a system and treatments to support them.

Thank you for being part of the change we need.

Excerpt is from my book in progress, Next Generation Alzheimer’s. More info at the link in my bio.

26/07/2022

Even If They Won’t Remember

On a cold walk at a county park one morning, as we quietly scooted down the plowed pathways with stacked snow on either side, I observed my mom smiling and inhaling deeply.

She held the air in her lungs, looked up into the pine trees, and then let out the air in a long, satisfied breath.

"It's nice out today," she told me. I nodded. As I tried to enjoy that moment, my own mind started to attack it.

"Well, damn. She won't remember this moment."

And almost as soon as I thought it, I regretted it. Of course it was true. But my next thought was: "Who cares?"

She may not remember that happy moment out walking with me -- but she was happy IN that moment.

She was enjoying the feel of the cold air in her lungs. She was having a good time walking with me.

She felt safe, and engaged, and comfortable, and loved. That moment mattered, even if she was never going to relive it.

** You can read my full piece at the link in my bio. **

19/07/2022

Do you ever look back on your journey and think - gosh, all of that was preparing me for THIS?

I’ve always been a writer, from the time I could hold a crayon, but I fell into journalism haphazardly.

I didn’t study it in college. I didn’t even write for my high school newspaper. My degree is in Creative Writing, but I’ve always been drawn to true stories. To the stories of my own life, and the stories of my friends and community.

My first job as a journalist was at a small newspaper in Indiana, attending school board meetings, in a town I had only lived in a few months. Going to those meetings and getting to know the other reporters at my job taught me more about information gathering and true storytelling than any of my college classes ever had.

In the 15+ years since, I’ve worked as an information gatherer and story teller in all sorts of realms, from a researcher’s role at one of the nation’s largest newspapers to blogging about my own family and community.

My mom was diagnosed with early onset Alzheimer’s three years ago and I immediately felt a push to “tell the story.” Not just my mom’s story, or my own, but the story of Alzheimer’s and other forms of dementia in society.

Since starting that storytelling path, I’ve been able to research these diseases, interview loved ones of dementia patients and interweave this beautifully messy story that so many of us share.

I’m grateful that all of my roads have led me to the privilege to write this book. I’m still working on it - and if you’re interested in being a part, here’s how:

First - I am looking for more interviewees, children and grandchildren of patients with Alzheimer's or other forms of dementia.

If this sounds like a fit for you OR someone you know, visit the form in the first comment.

Second - I am still looking for an agent and a publisher who are the right fit. The book is meticulously researched & comes with a social following of 75K+. If this is YOU or you know an agent or house that would be a good fit, please send me a PM.

Thank you for sharing your stories with me. 🙏

06/07/2022

Alzheimer's disease has never been a straightforward path -- and even within families, the perspective of the disease is experienced differently by each person.

I've interviewed people from several generations, including twin sisters Harrietta and Virginia, who spoke with me separately about seeing their grandmother and mother struggle with dementia. Many of their stories intersect, but some of their anecdotes and how they individually experienced these shared family struggles differ.

I look forward to sharing more snippets from those interviews here. Thank you to both of them.

05/07/2022

Alzheimer's disease is not just "something you have" until you die - it is actually a cause of death. Alzheimer's disease kills more Americans than breast and prostate cancer combined -- but what true preventative medicine is in place?

Women with a family history of breast cancer receive early mammograms. Men with family prostate cancer history are examined for the disease in their 40s or younger.

Where are the brain scans for those in their 30s, 40s and 50s with a history of Alzheimer's or other forms of dementia? Where is the checkbox on the family history form for Alzheimer's/dementia?

To start treating Alzheimer's and other forms of dementia effectively, we need to start earlier -- MUCH earlier than the first signs of mild cognitive decline.

Making that prevention and treatment a regular part of healthcare and wellness for people in their 30s, 40s and 50s is a big goal of mine -- let's tackle it together.

30/06/2022

An excerpt from a personal essay I wrote last year after a winter visit with my mom, who lives with early-onset Alzheimer's. Link to full piece is below:

Excerpt:

"It's nice out today," she told me. I nodded.

As I tried to enjoy that moment, my own mind started to attack it.

"Well, damn. She won't remember this moment, either."

And almost as soon as I thought it, I regretted it. Of course it was true. But my next thought was: "Who cares?"

Everyone deserves engaged love and attention -- even if they'll never remember that you gave it to them.