Nancy Poland: 0:00

Like I said in my book, I wrote about him, it was just precious times that, I could just really get closer. And I would say it taught me a lot I really had to learn grace. I had to learn patience and mostly I felt like God is really teaching me about faithfulness.

Rayna Neises: 0:15

That’s our guest today, Nancy Poland, welcome to Season of Caring Podcast where there’s hope from living, loving, and caring with no regrets. This is Rayna Neises, your host and I would like to introduce you to Nancy. Nancy is a writer and speaker focusing on caregiving as a volunteer educator for the Alzheimer’s Association, she brings her experience as a caregiver for her dad who had Lewy Bodies Dementia. She published her first book Dancing with Lewy, narrating, their experience. Her second book Remarkable Caregiving is a collection of true stories from six caregivers, thrust into unplanned circumstances as they emerge wiser and more resilient. Nancy is monthly newsletter Caring for the Caregiver and her website contain up-to-date resources. She’s a speaker, trainer for all events relating to caregiving topics, weaving in her faith story and offering practical advice and emotional support. A lifelong resident of Minnesota, Nancy and her husband raised their two sons and they continue to contribute to their community. Professionally Nancy is a contract and compliance manager where she utilizes her writing skills to support a nonprofit corporation. She loves to read, learn, and travel. Welcome Nancy. It’s great to have you here today.

Nancy Poland: 1:29

Oh, thank you Rayna, I’m so happy to be here with you.

Rayna Neises: 1:32

Well, first of all, I just love the fact that you’ve taken the time to share your story in your books. I think it’s so important for us to be able to share with others. Lewy Bodies is one of those dementias that we really don’t hear a lot about. So I’m sure that it was a difficult journey and just even being able to learn what you needed to know to be able to support your dads through that journey. So thank you for that. Let’s get started caregiving can come either slowly or suddenly, and oftentimes we’re not ready for either one, but what would you say? What can people do before a caregiving crisis comes? How can they be prepared?.

Nancy Poland: 2:12

Well, one of my messages is especially to like the sandwich generation, the 40 to fifties, or anyone who sees their parents or might be an aunt or uncle or another loved one aging, to just really think about what could happen, what they can do to be prepared. One of the most important things is to get legal paperwork in order. I I’ve just seen disaster situations where people, don’t have power of attorney or a healthcare directive and they end up having to go to court. You know, and spent thousands of dollars where they could’ve spent a couple of hundred to get the legal documents in place. And so it’s just, it’s important just to think ahead of, what could happen and don’t think worst case scenario, but just be prepared. If you notice your parents maybe are having problems in their house, or even if it’s you, as you know, we’re all aging here, maybe put up some hand bars in the shower, get a raised toilet seat. Make sure there’s not rugs where people can slip, just if you can try to mitigate any possible crisis that come up, life will be a lot easier as time goes on.

Rayna Neises: 3:20

Definitely preparation is something we don’t think about a lot of times, because we’re just so busy that we aren’t even thinking about the fact that we’re getting older every day.

Nancy Poland: 3:29

Yeah.

Rayna Neises: 3:29

And that’s part of the reason why the crisis has happened. And when the crisis happens, it changes everything so many times, especially with a fall, which those were a couple of things that you mentioned how to prevent those is to really pay attention to rugs and having those grab bars and some of those things, so really helping to be proactive by thinking about what the possibilities are. I think another piece of really being prepared is talking about it and none of us like to do that.

Nancy Poland: 3:57

Oh, you know, I look back on my parents as they aged and some conversations went well, but many didn’t go so well. And my dad had, as we mentioned, Lewy Body Dementia. And even before he’s diagnosed with that, they said he had Vascular Dementia and his, what they call executive functioning in the brain was kind of going. So, and he was kind of stubborn, I must say but of course, so was I ,but so we tried to talk to him like about driving. Just, Nope, I wasn’t gonna talk about it. He drove fine. So, you know, we laugh because we’re from Minnesota, we’re Minnesota nice here. I remember one doctor appointments sitting behind him and holding up a sign saying driving. So the doctor would talk to him about driving, you

Rayna Neises: 4:37

yeah.

Nancy Poland: 4:38

and kind of, instead of just directly saying, Dad, I’m really worried about you. I’m doing this cause I love you, dad. I want you to be safe. The conversations wouldn’t always go well. So that’s communication is so much the key. And even if you have to script it out ahead of time or have two or three conversations with your loved ones, it’s we just, we really all need to be more loving, more compassionate and better communicators.

Rayna Neises: 5:02

I agree, the communication is such an important key. And I think the other piece of that, that can really make it easier is if we have to take something away, a freedom away is making sure we provide an alternative. So just telling them they can’t drive anymore it means they have to give up everything that they’ve been doing, and that’s not fair. And I wouldn’t want to do that. So, really looking at how we can provide alternatives, whether it be a friend to pick them up or, something else to be able to allow them to continue their activities.

Nancy Poland: 5:32

Well, exactly. And that comes into another thing I’d like to talk about is getting community resources. So when finally my dad couldn’t drive the highway patrol finally had him tested and pulled them off the road. I would still drive him to his office where he could putz around. We got Metro mobility, which is here in the twin cities where, you know, he could schedule rides or when he got the point, he couldn’t do it I would schedule them for him. So he could at least, run to Walmart or get to church and that type of thing. And we’d talked to friends, maybe you can pick them up and take them out for breakfast. So it’s really, not trying to do it all yourself, but trying to give them some independence and tapping into resources.

Rayna Neises: 6:11

Definitely. And those resources can be tricky to find, but that’s where the support of others that have already been there or in that season can make such a big difference.

Nancy Poland: 6:20

Oh, definitely just talking to, people at work or your friends who maybe have taken care of their parents, or sometimes we’re talking about caring about a handicapped or disabled adult or a disabled child, you know, and those caregivers they go through a lot too, and just maybe joining a support group. My mom and I went to an Alzheimer’s Association Support Group for a while for our dad. And I learned a lot there. So it’s, you know, being inquisitive and asking people, what have you done? What would you recommend?

Rayna Neises: 6:49

There was a lot of wisdom out there. We just have to tap into it.

Nancy Poland: 6:52

Yup. Yup.

Rayna Neises: 6:53

So what surprising insights did you have from caring for your aging parents?

Nancy Poland: 6:59

I think just the sheer volume of effort it took. I mean, our mom, she had more physical problems. She had a stroke actually caregiving when she was. In her late fifties for her parents and she pretty much got over it, but there’s still some cognitive kind problems there with like sequencing or making meals. She had high blood pressure and the meds she took made her really tired. But the biggest problem was she had a crumbling spine. We went to almost every doctor appointment with her. Our dad had dementia, like I mentioned so it wasn’t just me. My husband who had a different work schedule than me would take my mom to doctor appointments. My sisters would trade off and take a day off. When we had to move out of their house, my brother-in-law got a trailer and help clear it out. So it was just, it took a lot of us to take care of those two people. And I think that’s another thing people don’t anticipate that. Sometimes caregivers need to quit work to take care of a loved one or so it’s just, you know, you just kind of have to look ahead and think, you know, what, how are we going to manage this situation?

Rayna Neises: 8:00

And you don’t always know what they’re going to need like you mentioned, because the progression of aging happens and sometimes it’s disease, sometimes it’s just getting older and not being as independent. So the amount of time it does increase as they age, but at the same time, a lot of times we just don’t think.

Nancy Poland: 8:20

Yeah. Yup. And you know, it’s so hard and I’m doing COVID because I have a friend who’s going through breast cancer treatment and she needed rides to get treatment like every day for four weeks. And it used to be the insurance companies would have rides or maybe the county would have like a senior helpline. Nobody was doing it nowadays. So

Rayna Neises: 8:42

Even the non-profits a lot of them had to cut that out.

Nancy Poland: 8:44

Yeah. Yeah. So it’s been even harder and bless her heart. A lady at church ended up taking her almost every day. And when she couldn’t some other people from church filled in, but I mean, sometimes you’re finding the resources for your, to yourself. Sometimes you’re helping a friend and sometimes it’s just hard and you just have to, you know, pray that God will provide what we need at the time that it’s needed.

Rayna Neises: 9:07

And even with COVID, it’s not like you can, you used to be able to go and stay with them as well. And now you can’t even get in. So then you have to spend two hours in the car or whatever, that’s needed or run your own errands or whatever. So it has COVID has changed everything when it comes to support and so difficult. I cannot even imagine having a loved one with the inability to communicate like dementia or something else in a situation right now where you can’t be with them. I just can’t even, it breaks my heart thinking about it.

Nancy Poland: 9:39

Well, I know it breaks mine too. And we have a neighbor across the street he just died this week, an older gentleman, but they’re from Bosnia, a different country. And he was in the hospital after a fall and then maybe let one family member in a day. But nobody there. He spoke some English, but nobody could even help them cause they couldn’t speak Bosnian and they wouldn’t let the family in and just a heartbreaking situation.

Rayna Neises: 10:05

It is, it is amazing. And those things, if you’re dealing with that, you always assume I’ll be there. Or somebody from the family will be able to be there. And this is healthcare has been turned on its head when it comes to this not being able to be present. Such a difficult situation.

Nancy Poland: 10:21

Oh for sure.

Rayna Neises: 10:23

What would you say are some positive aspects of caregiving? There’s lots of stress, but what about the positive.

Nancy Poland: 10:29

No, I really got to spend more time with my parents when we were caregiving. We still had a teenage son at home, so there was still a lot of running around at home. And I was working full time, but like when my dad couldn’t drive and he had a little office downtown Minneapolis, I would drive him to it. And I got to hear stories from him. You know, he had dementia, but he could still talk and he could still remember things back from the old days. And, like I said, in my book, I wrote about him, it was just precious times that, I could just really get closer. And I would say it taught me a lot I really had to learn grace. I had to learn patience. and mostly I felt like God is really teaching me about faithfulness. I, you know, financially, I thought, how are they going to get by? Because he never saved a cent for retirement. And I just heard God say, I will be there. I’ll provide. And, and He did in some times, very miraculous ways. So. You know, it just helps to be a Christian. And to know that you have that help beyond our natural world and it just helps you become a loving, more kind person.

Rayna Neises: 11:30

I agree with the character development in the season is amazing. I think to myself, how do I get this old and not get better at this?

Nancy Poland: 11:37

Yeah. Oh, I know.

Rayna Neises: 11:39

We get there eventually, I guess. So that’s, that’s the goal and I agree. Faith is such a, a foundation. It was such a huge difference for me in my caregiving season. It really impacted, I think my resilience and my ability to just find the good, because there is a lot of heartache and there is a lot of struggle, but there is a lot of good when we learn to look for it. So those memories and opportunities to hear stories. I know one of the things for me my dad’s sister, I was able to spend more time with her than I’d ever spent. And so really getting from that relationship that at one point was I really didn’t know her very well and kind of, wasn’t sure about it, to a place where we just have a precious relationship. Now, even now that he’s gone, you know, just hearing stories that I never heard from him or getting him talking with her about those things, it was amazing to be able to invest that time. And I often say, as an adult, I would never have spent the amount of time with my parents and I didn’t get to with my mom. I was a young adult with my mom and my dad was her primary caregiver. So I would spend a week at a time, a couple of times a year, but never that concentrated time that I spent with him. It can definitely be a gift, but we have to see it that way too.

Nancy Poland: 12:58

You do and, and we’re all gonna get frustrated. And, you know, it’s, even after I felt like God would supply for them, there was quite a bit of testing of our faith and we just, we had to learn to trust God. And like I said, I mean, my dad and I butted heads many times. And, after he, he kind of had dementia, he couldn’t remember, I have three sisters, one time he was talking about what he’s supposed to do. And he points to me, he goes, well, ask the bossy one, what to do. So it’s like, okay, you can either be hurt or you can laugh. And my sister still tease me about that, but know, those are those moments of humor. And my dad would still crack jokes sometimes. And maybe they were jokes we heard a lot, but you know, there’s this moments of joy too, in the process.

Rayna Neises: 13:44

So tell us a little bit more about your books. What are they about and why did you choose to write these stories?

Nancy Poland: 13:50

Okay. Well, my first book I wrote is called Dancing with Louie and It’s a Father Daughter Dance Before and After Lewy Body Dementia Came to Live with Us. And, I knew while I was caring for my dad, I had to tell this story. I mean, there are times that were so hard and so testing. And so I took notes and I kept like letters we’d written to the doctor, to the driver’s bureau and different things. So I had a lot of notes, for a couple of years after he died, I would make outlines. But I just, I never got to the point where I could write the book. And about six years after he died, I thought I’m just going to do it. I was going out of town on a conference. I went early and I locked myself in an Airbnb and I just started to write and it just kind of poured out of me. And yeah. And then there’s the whole, how much do you talk about your family? How much you talk about yourself? I have three sisters. I don’t want to reveal any privacy things for them. So, it took a lot of editing and my oldest sister actually helped me a lot with proofreading and editing. So it’s just, it’s a story of caregiving and how dads, aren’t always really thrilled that their daughters are suddenly have to count their money or go to the doctor with them or that. I just wanted people to know my faith story with that. And then after that I thought, well, this one pretty well. So then I decided to write a second book. It’s called Remarkable Caregiving, The Care of Family and Friends. And so I wrote that book. I interviewed six people. Caregivers in different situations, and there was two who had children born with disabilities. One was with down syndrome. Several with adult situation, somewhat dementia, some other things. And then, I interviewed one man who took care of his friend who had Parkinson’s for help take care of needs called himself the relief pitcher. And these stories are just amazing of how innovative people are and how they figure out how to use resources and or how they try to go out on their own. And it’s is just amazing. So I’m excited about that book that just came out. I’m using the book right now for Christian education, my church, you know, to talk about how can we care for the caregivers. I’m particularly excited about my second book now, just because it’s new one, it’s just launching.

Rayna Neises: 16:06

Yes. So this is exciting. And I love that you’re sharing other stories because one of the things that I found that made me motivated to share my family’s story was I felt like we did it different. Then what people assumed or expected. And I think it’s so important to have that innovation, to look at your family situation and define what fits for you, but don’t feel like you have to do it like somebody else did it or that you don’t have any options. I think so many times people feel like, well I work, there’s no way I can take care of my parents. You know, it’s,

Nancy Poland: 16:38

right. Yup,

Rayna Neises: 16:39

just kind of an assumption that it’s either going to be this way or this way. And there’s no other option.

Nancy Poland: 16:44

Exactly. And I know after my mom passed away, we ended up moving our dad in the kind of a modified, assisted living where we could pay for services, which were pretty well for a year and a half. So He finally fell. He must’ve had a stroke or something we don’t really know. And then none of us had the ability to care for him at home. But, the, the situations we found worked well, he was in memory care and it was a family setting and we could go visit him. I would’ve liked to have taken care of him at home. And one of my sisters was she would have, but I, I like what you talk about, no regrets, we, I wish I had done this. I wish I’d done that. I wish I’d had home health care, you know, but. Especially when you’re a Christian, once they pass away, it’s like, they don’t have any regrets in heaven. They don’t say, oh, I wish my daughters or my son, or whoever had done something different it’s just us on this earth that can be plagued with I wish I’d done this and that.

Rayna Neises: 17:36

That’s why it’s important just to do the best you can and to really, examine those things. And in the moment you did everything you.

Nancy Poland: 17:45

Yup. Yup. So, I mean, I hope that’s, and that’s why I’m speaking. And I have my books. I hope to help other people maybe avoid some of the problems that we ran into or that other people run into with a little bit of planning, you know, a little bit of researching resources, you might find some answers before you even need them.

Rayna Neises: 18:04

And that is definitely the ideal way to do it. Yes. So tell our listeners, Nancy, how they can get in touch with you and where they can find your books.

Nancy Poland: 18:18

Okay. So I have a website, www.NancyRPoldand.com, just like my name. And you can order books from there. You can sign up for my newsletter and on the front page of my website, I have a really neat document. You can get. It’s called the important document checklist, where you can write down where are my insurance papers? Where are my legal papers? Who would you contact at work? If my husband and I got in a car accident, it’s like our adult sons, would need to figure all this out. So it’s kind of a, it’s a free little checklist and you can also buy my books off amazon.com, Barensandnoble.com. Any of those type of websites where books are sold. And I also have a newsletter you can sign up for, if you sign up for the checklist, you can get a subscription to my newsletter. Also, you can just sign up for the newsletter where I it’s free. There’s no, pop-up buy ads. It’s talks about caring for the caregiver.

Rayna Neises: 19:11

Excellent. And I know Nancy, you are a part of www.AlzAuthors.com just like I am. I love their work. It’s important that we share our stories and that we encourage other caregivers with our stories and that we also then share all that we’ve learned to be able to help them through their journey. I love the scripture that tells us to comfort those with the comfort that we’ve been given. And that’s the way I look at this season is just really offering as much comfort and encouragement as we can, because it is difficult, but it is doable. Thank you for sharing your story Nancy really appreciate having you here today.

Nancy Poland: 19:48

Well, thank you, Rayna. It’s been a pleasure speaking with you.

Rayna Neises: 19:51

Just a reminder, A Seasonal of Caring Podcast has been created for the encouragement of family caregivers. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of caring.