Nancy Poland 10/14/25

Selma: Welcome, Nancy. Let’s start by having you share your caregiving journey with us.

Nancy: I thank you so much for having me with you two today. It’s such an honor. I’ve

been a caregiver my whole life, with grandparents and children. But it got very intense

as my parents aged. My mother, among other physical ailments, such as deterioration

of her spine, developed kidney cancer and had a kidney out. Meanwhile, my dad had

started experiencing dementia. They first diagnosed him with vascular dementia, mini

strokes in the brain. They both needed a lot of care, and for a while, they took care of

each other. My dad could do the physical things, my mom could do the pills, cook

simple meals, and pay the bills.

After my mom passed away, my dad went downhill, and we moved him into semi-

assisted living, where he could get help. We would visit him often, taking him places

such as doctor appointments. But it got harder and harder. He was a very independent

man, a World War II veteran, a business owner, with four daughters. He didn’t want us

telling him what to do. Well, long story short, he fell, and we ended up having to put him

in a nursing home for a total of fourteen months.

Several months before Dad died, they said he had Lewy body dementia, which I had

barely heard of… I didn’t know much about it. It is similar to Parkinson’s, but different

symptoms. He became stiff and unable to move his limbs much. Eventually, he couldn’t

even lift a piece of bread to his mouth, as his brain could not connect with his limbs. We

knew none of us could have cared for him at home; he had to be lifted out of bed and

assisted with toileting. It was devastating.

I had kept notes and correspondence from those caregiving years. As time went on, I

thought, I need to tell the world this story. I first wrote a blog about Lewy Body dementia.

Then I turned it into a book: “Dancing with Lewy, A Father Daughter Dance Before and

After Lewy Body Dementia Came to Live With Us.” And that started my caregiving

journey of educating people. I’m not a big business; I’m just me, one person, and my

sister helps me with proofreading.

I wrote another book, “Remarkable Caregiving: The Care of Family and Friends,”

featuring six true stories about remarkable caregivers. I continue to write about

caregiving, and often focus on dementia.

Selma: Can you talk about how you transitioned from being a caregiver to working in

caregiving? And can you tell us about your business, Grace’s Message?”

Nancy: I went through three different name changes for my business and finally

decided on Grace’s message. Because Nancy means grace, and we just all need so

much grace, especially caregivers. We just have to be kind to ourselves and to each

other. I also believe in the grace of God, who will help us through trials.

Selma: You wrote a chapter in the newly released book The Caregiver’s Advocate, Vol

2. Your chapter was on Lewy body dementia, and one of the comments that you made

was that the medical profession knows very little about this disease. Can you talk a little

about that?

Nancy: It’s been over a dozen years since dad was diagnosed with Lewy Body dementia.

The first neurologist didn’t recognize it, or maybe dad had other symptoms more similar

to vascular dementia, the initial diagnosis. Dad wasn’t exhibiting all the LBD symptoms

at first: the gait, the walk, and hallucinations. But I am surprised they didn’t recognize it

for a long time. I even remember asking, “Is this Parkinson’s disease?” And they said,

no, it’s not Parkinson’s. (Lewy Body and Parkinson’s are somewhat related.) I think it’s

diagnosed more often now -- or maybe I just see more. But I don’t think the average

family practitioner is aware of this… there’s just so much education needed. That is true

about regular dementia, and then you add this rather unusual disease on top of it.

Selma: When people read your chapter, what do you want them to walk away with?

Nancy: I want them to know that this is really hard. Alzheimer’s is very hard, I’ve had

relatives with Alzheimer’s. In this disease, they may retain some memory. The memory

goes first with Alzheimer’s and last with Lewy Body. Even though my dad couldn’t talk,

he knew us till the end, because he would get emotional. I had a long-distance sister

who would call, and he’d cry.

In the middle stages, similar to Alzheimer’s, the behavior can be so erratic. One day,

they can function and do something, and the next day, they’re just sitting there. It is

proteins in the brain, and they move around or shift, and affect the different parts of the

brain.

Zack: Let’s make sure our readers get the book. They really need to read your chapter

as well as Selma’s chapter. You guys both did an amazing job in this book. I was a

caregiver for my father long-distance, and currently for my mother long-distance. I’ve

been very active since 2006. Fortunately and unfortunately, I’ve been in the caregiver

role for quite some time. When I was reading your chapter, I was really moved by how

you described your mother, having to move to a single bed in another room because of

what she was going through at night. You have to give yourself some grace. You were

kind of beating yourself up a little bit and saying, Hey, I should have seen this. There’s

no way you would know this. Right? So I just want to step back in that time again. Were

you working this whole time while this was going on?

Nancy: Yes, full-time plus traveling for work.

Zack: So how did you deal with that? How did you work and travel full-time and care for

your parents? And after your mother passed, your dad moved into assisted living, then

he went to memory care. This is a lot to take on. How did you deal with all that and try to

keep a job?

Nancy: I also had a teenager at home. My husband and my sisters, we all kicked in to

help. I did all the administrative things, organizing, and medical care coordination. I

didn’t take them to every medical appointment, but quite a few as I lived the closest. I

remember care conferences, at the nursing home, they’d be scheduled for 2:30 in the

afternoon…We didn’t have the luxury of Zoom… It was far enough away that when we

got done, I couldn’t go back to work… So yeah, it was very stressful.

Zack: Did your employer or manager know about your situation? Did you share?

Nancy: There were a couple of people I worked for who were supportive. My first

manager was an attorney; when I went in there to tell him about my dad’s dementia, he

almost started to cry. He said, “My grandma has dementia and we’ve had to take care of

her for years.” And later, I had another manager who was so understanding. I’m still

very close to her, even though I’m retired. They were good about it, but still when I had

to say, “I’m taking another half day off to go to this care conference,” it was stressful.

Zack: You’re fortunate because many of the caregivers we talk to do not share for

whatever reason. Do you have a suggestion for an employee who may feel

uncomfortable sharing? What are some steps that they can take to maybe talk to their

employer or HR manager?

Nancy: I think it’s very important for people to understand the benefits available. And

again, every company and every workplace are different. Many have Family Medical

Leave Act; it’s really important to understand that. If you don’t want to talk to your boss

about it, you can talk to HR. Don’t just wonder if you are going to be punished for taking

a week off work. When my mother was dying, I wish I’d taken advantage of FMLA more.

Understand the benefits that are offered and know your rights. That is my first piece of

advice. Also, honesty is best. I was a manager for 18 years. I would rather have

somebody tell me what’s going on at home than guess -- Oh, why does she have to

leave again?

Selma: In your podcast, Working Caregivers and Business Owners: A Necessary

Partnership, you mentioned some things that employers might be able to do to better

support their working caregivers. Can you talk about that for a minute?

Nancy: There are a couple of ideas I’ve had. One is to make long-term care insurance

available. Another, in this day and age, there are a lot of technological resources.

There’s remote monitoring, the emergency call wearables, digital notebooks, and more.

Maybe the company can negotiate bulk discounts on some of those items and then let

the caregivers take advantage of that. It might not even cost the company anything.

For years, I was a community educator for the Alzheimer’s Association. We would go

out and talk to caregivers, and sometimes we would present to companies, and that’s

free. Also, the AARP or the VA may have people who will come out and speak to

employees, and that doesn’t cost the company a thing. I know we had hour-long lunch-

and-learns where you could bring your bag lunch and learn.

Even though some caregiver benefits might cost money -- providing long-term care

insurance, bereavement leave-- it’s important to look at these benefits. So that’s a few

ideas I’ve had.

Selma: In addition to having that difficult conversation with their managers and sharing

their caregiver status, what else do you think employees can do to be more visible at

work to get the support they need?

Nancy: There’s a huge amount of education needed. So I could say to my coworkers,

depending on the situation, my dad’s just been diagnosed with dementia, and I want

you to know that I might have to leave in a hurry, or I might get a phone call that upsets

me. I appreciate your support because I know you have this situation with your child at

daycare, and you have to leave sometimes, while I’m on the other end. I’m going to

have to leave if my mom falls or my dad has a crisis. Here we are on opposite ends of

the spectrum, but still on the whole scale of life.

Zack: To your point that you just shared, one of our recent guests said, You should put

in your calendar, I am going to my mother’s doctor’s appointment. I am going to the

social worker meeting, you know, and put that in your calendar, just like we do when I’m

going to my kid’s baseball game or I’m doing this and that. Maybe that will spur some

good conversation.

Nancy: And we know the young ones are going to have older parents or older relatives

or a spouse someday that needs care.

Zack: As you mentioned earlier, in addition to your chapter on Lewy bodies in The

Caregiver Advocate Vol 2, you’ve got two great books out there: Dancing with Lewy,

which I love that title. I love how you talk about caregivers as imperfect. Thank you for

that because none of us is perfect at caregiving. And Remarkable Caregiving. Both

those books are out there.

But Selma and I love to ask this question: If you were to go back in time when you were

starting your caregiver journey, wherever you feel that might be, what would you be

telling your younger self to get ready for this journey?

Nancy: Well, I would say, you did some things right. We got the legal paperwork in

place… I would say don’t take it so seriously… sometimes things are just funny… I’d lie

awake at night and think about it, and I would have so much anxiety… There are so

many resources out there… now, a dozen years later, you have so many resources on

the internet, and you have books. First of all, learn about it, but don’t get so upset. It’s all

part of life and part of aging, and there we go in a few years.

Zack: I love that, Nancy. You’re right. You’ve got to make it a little lighter.

Nancy: Now days, there are so many resources people write about. For example, I’ve

read about dementia kits, or art, or other projects you could share with your loved one

with dementia. And I thought, that would have been a good idea, just bring dominoes

when I’m going to see my dad. We would play music for him on DVDs, which he loved.

Have fun with it … like I said, caregiving is part of life, and you’ve got to learn how not to

be miserable all the time.

Zack: One more thing, Nancy, how can people find you? What’s the easiest way to find

you?

Nancy: My website is https://www.gracesmessage.com, and you can send me

messages through there. My email is author@nancyrpoland.com

Selma and Zack: Thank you so much, Nancy!