Phillip Rau (Host): Hallucinations, forgetfulness, confusion, fear, depression, anxiety, and much, much more. Millions of Americans are living with Alzheimer's or other dementias, and the vast majority are cared for at home by family members and loved ones. These caregivers provide billions of hours of unpaid care each year.

They support and care for parents, spouses, or siblings. They work, raise children, and navigate their own paths into retirement while providing some of the most mentally, emotionally, and physically challenging care. And many, if not most, of them do it without the support and resources they need to care for themselves.

Today, we'll explore some of the realities of at home caregiving and what is being done here in Vermont and Northern New York to address this long standing issue. Welcome to a very special edition of Health Talk. I'm your host, Philip Rau.

Thank you for joining us here on Health Talk today. I'm very pleased to welcome Allegra Miller of Burlington to the program. Allegra is a retired educator and at home family caregiver herself to her husband, Bob Rinckema. Allegra, thank you so much for joining us. And please start us off here by telling us a little bit about yourself and Bob.

Allegra Miller: Sure. First of all, thank you for this opportunity. It's really important to me to highlight such an important role as a family caregiver of somebody with dementia. So a little bit about me. I am a retired educator. I was a music teacher for about 20 years and then an administrator for about 15 years in different schools in Vermont.

I had a great career. I loved being a Principal. I loved being a music teacher. All of that brought me to Vermont, which is how I met my husband. And, we met probably when I first moved to Vermont, but we started circumstances were such that we started dating in 86 and got married in 90 and had a child together.

He had two children from another marriage who were older, kind of already starting to launch themselves. We got married and we had one son together, our son, Peter. And I think part of that question is what drew me to Bob. And, because this is really critical, I think, because you, there are things that you hold onto as you're caregiving.

He has the most amazing blue eyes. He had this wonderful sense of humor that, was just made me laugh all the time. We had a great life. He also had this calm grace and dignity about him. He was never a person that was disrespectful, and always was very positive and encouraging to his family. He was a very, very strong family man with lots of love in him for his family.

Host: I know something you've told me before is that he also put a really high value on community and his neighbors.

Allegra Miller: Yes.

Host: So, tell me a little bit about how you became a caregiver. When did Bob receive his diagnosis or diagnoses, and how did you guys deal with that as a couple, as a family, as an extended family?

Allegra Miller: Yeah. So, he was first diagnosed with Parkinson's disease and that takes a while to officially diagnose. So, we started in 2005, I think, and finally in 2006, after seeing a couple of neurologists, we had a firm diagnosis of Parkinson's disease and then the dementia started to creep in. Just things were changing for him. They weren't quite the same as they used to be. And so that diagnosis was a few, a little bit later. I can tell you when we finally, when we got the diagnosis of Parkinson's disease, that was first, we walked out of the neurologist's office and he looked at me I'm like, Oh, okay, what does this mean?

He just said, you know what? It's not cancer. We can do this. We got this. And that phrase, we got this, we use throughout our whole time. We just, whenever we came across something that was like, well, wait a minute. So initially you get to work. I mean, especially with the diagnosis of Parkinson's, you're going to make sure things are in order and told our family and we're very upfront with our family first. We waited a while before we started telling friends just because we needed to kind of sink into that.

But, you know, you read about it, you read all sorts of things and you look at pamphlets but we knew things would change, but we didn't know how quickly they would start changing until the cognitive piece came in. And that changed a lot, for us. It sped things up because with Parkinson's you can live many, many years with Parkinson's but when the dementia piece comes in, it makes movement even more complicated.

And your life just a lot more challenging in some ways to do certain tasks, which are complicated because of Parkinson's, but then you've got the cognitive piece. So it, kind of wraps around, just daily tasks, daily procedural tasks in ways. But at first, when we didn't know that, we just got through our life.

I still was working. He was still working. He was still driving. And then as things progressed, I went from just caring for my husband as every married couple does, you care for each other to eventually realizing, wait a minute, I am more of a caregiver now.

Host: And that's something I want to take a moment and reinforce, because our conversation won't do it justice, right? This is a period of years, years long period where you're both working, you're both raising a son, you're both doing all of the quote unquote normal things that adults do while also dealing with these life changing diagnoses and how they impact Bob and you.

So I think that's really important for folks to understand before we start talking about at home caregiving and full time at home caregiving, which is where I want to go next. So, when did you realize that you needed to do this full time that this was a full time job, right?

You never stopped caring for someone or caring about them. But when did it start becoming really apparent that this was going to take more time than you had to offer when you were working and doing all these other things?

Allegra Miller: Well, I love, love being a Principal. It's like the best job in the world. And I was working in such great schools, learning so much from just such committed and compassionate people. And so I just tried, I tried my hardest to make sure everything could keep going. And then I realized I wasn't doing my best as a Principal.

I just couldn't keep doing it because I was just getting pulled. And Bob just needed more care, just little things. I needed to make lunch for him in the morning to make sure that he would eat it during the day, you know, and I never had to do that. So in too many of those tasks, I had to start taking over for him.

And then, when he stopped driving too, I realized, okay, I can't just, it just got to the point where I knew I wasn't giving my best at school. I wasn't giving my best at home. And my husband of course, a hundred percent won that. I just needed to stop work.

Host: So that was about 2016 if I remember correctly. So, talk to me about things that you remember from that time period. It has to have been a time period where, you've been dealing with it for years, but things are maybe accelerating, impacts are maybe getting more noticeable for both you and for Bob.

So what memories stick out for you, during that time when you, uh, when you stepped away from your professional interests and devoted everything to caring for Bob? 

Allegra Miller: So I think what I started to realize, I try to, it was so grateful to have a background in education because a lot of working with somebody or being with somebody as their caregiver with dementia and Parkinson's diagnosis is the problem solving that happens. Because each day, you never know what's going to happen. So I was grateful for that. I also tried to keep things as positive as I could because it's really easy to sink down into negativity. And that just, I didn't think was going to be good for anybody, for our family, for me. I'm not saying I was perfect.

I wasn't, but I came to realize that anger that I had and the confusion I had was really, grief. Some people think grief starts to happen when there's an event; someone dies, or something changes dramatically. But it doesn't. So all those little losses that I was experiencing along the way, once I realized that grief and joy can happen at the same time and be side by side, it was really helpful for me because, it's ever changing. There are non stop tasks and yet I still wanted to find a way to maintain my identity and have my husband maintain his identity. So I just got to, one of the things we always enjoyed and was really important was exercise. So I was very grateful. There are a lot of opportunities in this area.

And we started, we had taken some dance classes together, you know, like ballroom dancing, back when we were first married And so we really, we love dancing together. We always dance in the kitchen and just, it was just one of our things, put on music and dance.

So, we started, there's a movement class for people with Parkinson's, and it's centered on dance. And I talked him into going, and we went, and we found this wonderful community. Everybody in there has Parkinson's, many also have some kind of dementia. They're there with their caregivers, some are not, but it was just this wonderful community.

I'm so grateful for, and that's run out of the Flynn Theater, it's still very accessible to people. And we also did another movement class called Pushback. And sometimes I left him off, sometimes I stayed and helped. Through your physical therapist, there's other opportunities. I got him involved in a yoga one on one session because that's really important.

So I tried to do as many of that and also stay in the community, which is really, really important. So I think for me, just trying to find those opportunities that we could still be a couple because your, your role changes. You go from, you know, you're a wife, you're a mother, you're a couple, but things are different.

And, you're also a caregiver and how do you continue with all those roles and also have this responsibility of caregiving. And when you read articles, they all, you know, it's caregiver stress and how to, you know, work harder, don't work hard, work smarter, all of those things.

And I'm like, I couldn't hook into those. It just didn't make sense to me. I mean, I needed to find my resilience in other ways and I, I found it with doing things with him. And I just had to find those things.

Host: It strikes me as really powerful, because you talked about kind of these losses that happen along the way, right. And, not that they're big or small, right. But that they're things that happen at a moment in time, and they accumulate, right. And it seems to me that you and Bob were doing something, you know, you're trying to, you were finding ways to, to prevent those losses from happening, to hold on to things that you both loved and that made you, that went into defining you as a couple.

One of the things I want to touch on really briefly is your love of music, because I know you as a music teacher, that's one of the core aspects of you. I know Bob, uh, loved to hear you play the piano and loved to watch you play the piano. So I wonder if you could talk a little bit about, did that make an impact during this process as his conditions progressed?

Allegra Miller: Yeah. I mean, as I mentioned before that, you know, music, he loved to sing and to the, you know, the, the car radio or anytime music was playing in the house. So, and music is really a way to keep people engaged. So we did a lot of that, but also, yes, he loved, always loved to hear me play the piano, which was great.

And then, so I would play the piano and he would sit there and listen. And I just, I'm just sight reading through all the great songs of the 60s or the 70s, you know, things that I knew that he would, it would strike him, maybe he would sing or, and then all of a sudden he started coming over and sitting right next to me and playing random notes.

And that, I couldn't, I don't know, that was like, wait a minute, those aren't the right notes. I had a hard time letting that go. But it was so great that he wanted to be there and join in. And so I figured out. I tried a couple of different systems and I finally figured out a system that we could play songs together.

And I, I numbered, seven keys on the piano in like the C scale. And I would just say, depending on what chord I was on, I would say play five, play four. So he would play the number and we had the best time doing that. It was just such a great way that we could connect, and through something that was always so important in a way we connected before, we're just doing it in a different way at this point. So.

Host: Let's talk a bit about the impact to you. One of the things that you hear from family caregivers is that it's, it's an isolating experience. It's also extremely rewarding. You know, so it's this dichotomy of it's the most important and valuable thing maybe you've ever done with your life.

But it's also the thing that puts you in a box and cuts off connections that you may be really, really need, to get through the day. So could you talk a little bit about your experiences with those dynamics? How did it impact you and when did you know, I need supports? I need resources.

Allegra Miller: That's, yeah, it sneaks up on you, like caregiving sneaks up on you and you realize, well, wait a minute, this, I really am a caregiver. You start feeling isolated and a lot of it is not, you don't have other people to talk about it with because not, your friends aren't going through it.

And I was also able to do some caregiving for my parents and that's just a more common thing that other people are doing. But caring for a spouse is, not as common, gratefully. But I think I am very lucky in so many ways, first of all, to live in a great community. I'm in the Five Sisters neighborhood in Burlington.

It's a great community to be in. Lots of people, you know, that check up on you and, you know, talk to you when you're on the street and kept talking to my husband, even when he wasn't always able to communicate as he had before. I have a great family. Bob has three children. So I have two stepchildren and they were very involved.

Our own son was very involved. My siblings, as I said, were really involved, his siblings. And I have wonderful friends and, people responded to me reaching out and saying, Hey, can you go for a walk at two? I have somebody coming in. Can we go for a walk at two? And it's not that I really needed to talk to, about what was happening.

I just needed to go and be Allegra, right. And listen to somebody else. So I was able to stay connected. People would come over. I had friends that would just bring dinner to say, here you go. Unannounced, here it is, put it in the freezer if you don't want it. I mean, I just feel really, really grateful for that.

I think I called my sister every day

and, uh, yeah, I know. And I have wonderful brothers who married wonderful women too. So I, I just feel very fortunate that way. And I also think, to try and keep us both Bob and I, to, I mean, I think as you were talking about the isolation, that sense of grief, that sense of loss also brings depression and, you know, trying to focus on what's the positive.

It wasn't always an easy thing, but just for example, you know, one of the things, as you had mentioned in the introduction is hallucinations. Well, he had them every day. And I was like, I could tell him nobody is in the backyard, and argue with him about that. Or I could say, tell me about it. What are you seeing?

And he would say, well, don't you see that? And I said, you know, you get to see on a different dimension than I do. And I want you to tell me about it because I don't get to see on that dimension. So tell me what you see. And we just had this running joke because it was always a circus. I don't know why it was a circus, but it was always a circus and there were performers and there were acrobats and there were drums and all of us.

Sometimes the circus person would throw something that would come in the house and you'd go, Oh, what was that? You know? And it was always a joke because my mother actually was one of the many things she was good at. She was also a clown. And so we always brought up the fact that, hey, maybe mom's out there too.

Is she out there? Do you see her? So I think his sense of humor, and when we had people over his, he could get his sense of humor going so easily. So it was, we always tried to make it as joyful as we could. That being said, it wasn't always.

Host: One of the things I want to talk about next and really one of the big reasons why I asked you to come on and talk with us today, is because you had these experiences, and you said to yourself at some point, or I imagine you did; there's something that I can do to help other people who are going through this.

And I'm sure that part of that was your background as an educator and the mentoring and all of those things that you did during your career. So tell us a little bit about how you reached out. You connected with folks at our dementia family caregiver center at the University of Vermont Medical Center, and you actually helped develop a peer to peer support program, that serves at home caregivers.

So tell us a little bit about how you came to decide to do that, because that's a lot of work and that's a lot of giving of very special pieces of yourself to others. So talk a little bit about why you did it and what you did.

Allegra Miller: So as you mentioned, I, as an educator, I absolutely 100 percent believe in mentoring. I have been grateful to have so many wonderful mentors that have helped me in my professional life and probably my personal life too. Sometimes they're intertwined and I have been able to be mentored. I have been a mentor to several people also, and I'm continue with that now.

I'm still mentoring administrators. I supervise student teachers for St. Mike's, which is, supervision, but also mentoring, so I a hundred percent believe in mentoring. I also, you know, I tried the support group role and it didn't fit what I needed, any kind of the support groups I tried, and they could be very different now and but at that time when I was doing it, didn't, it wasn't something that really matched what I felt was helpful for me.

And then I went to something called the CARERS program, which is also run out of the medical center and the dementia family caregiver center. And that is a therapeutic setting for people who are family caregivers for somebody with dementia and that was so helpful because it made me realize other people, wait a minute, other people are absolutely going through the same thing.

They're having the same experiences. They're feeling the same thoughts. You know, thinking the same thoughts, having the same feelings. And that naturally led me to when that was done after my husband passed, I'm like, wait a minute, how do I still, people also, it's Vermont. So people kept calling me and saying, Hey, I have this friend who's taking care of their spouse, who's been diagnosed with dementia or has been diagnosed with Parkinson's. Would you be willing to talk to them? And of course I did. And yes, and you just start naturally with that. And then in talking with the people at the Dementia Family Caregiver Center, I'm like, I think there's something here. And we realized that people need conversation.

They need to be able to talk to somebody who has gone through the same thing, who's been in their shoes. They don't need sympathy. They need somebody who's, who can, is compassionate and also has the time for them. You go to the doctor's office, doctor doesn't have as much time to talk to the caregiver.

It's really as it should be centered on your loved one. What are some ideas of things that you can do? What are some, I don't know, like, what are the right diapers to use? When do you know that this is, when do you do this? How about this? What are some other ideas? I find it's been helpful for me as a mentor to talk to people who are my mentees.

Also, I'm, I'm gaining a lot from it, as you do with any mentorship.

Host: Yeah. And you're talking in the present tense, right? You're still involved. You're still helping other folks who are going through this right now.

Allegra Miller: Yeah, we're still tweaking it too, you know, it's like, it's organic and like any kind of program. We, very grateful because we wrote, initially wrote a grant, to the auxiliary and got money from them right away. They responded right away.

I just couldn't believe it. And that jumpstarted us. I think I'm a volunteer, I don't know what my official title is, but, yeah, it's a great way for me to give back and to try and help and to highlight. I don't want a family caregiver to ever think what they're doing is not important and people aren't watching and there's support out there. This is a free program. We're very grateful that the hospital's supporting it also. 

Host: And if you're listening or watching right now, we'll link to the Dementia Family Caregiver Center and to the programs that Allegra is talking about in the episode description. Those folks are wonderful folks. Please reach out. Please seek resources. Please connect with the community. It's really vibrant and beneficial spaces as Allegra could tell you.

So what's, what's next? You know, you're doing an awful lot, but there's still so much more to do, especially in this space. So is there anything coming for you, any new projects, in the dementia family caregiver space that you want to talk about?

Allegra Miller: Well, I think we still have to keep working on the, the mentorship program. I hope to do that. I also have been in, involved, another thing I'm doing, we're actually learning a lot from them is this, from Rush University, in Chicago, the Perseverance Program, which is an NIH grant funded study for people with, caregivers of people with Lewy body dementia.

And I got involved with that because when I was trying to find a mentorship for people with dementia, I realized there wasn't one. And I came across this in my internet search and I just kept contacting this Dr. Fleischer. And she emailed me and then the next thing I know we're on, we're talking to each other. And now I'm like, I'm on the caregiver advisory board. So.

Host: And I don't think we covered it when we were talking, but that was Bob's dementia diagnosis is Lewy body dementia.

Allegra Miller: Yes, Sorry. Yeah.

Host: No, that's no apologies. Well, that's wonderful. I guess let's wrap up in a helpful space. You've already talked a lot about this, but what is your core message? What is, you know, if you had a headline in a newspaper or a couple of minutes on a radio show, what do you want family caregivers in Vermont and Northern New York to know about what they're going through right now and about the things that are out there, the resources and the people that can help them?

Allegra Miller: I want them to know that in Vermont, there are a lot of dedicated, compassionate people. I've, been on several committees and I'm just so blown away with people who are trying to wrap their heads around all of this and provide support to the family caregiver. I really feel like it's at a great juncture now and primary doctors and the hospital that has taken a lead that, The Department of Health has taken a lead, the Agencies on Aging; they've all are working together to help the family caregiver and just feel the last few years this is really starting to blossom.

And I also think that as a family caregiver, don't feel alone, don't feel isolated, reach out. It was always so touching when people always said yes, sure we'll come over for dinner or they would call me and say, Hey, we're coming for dinner. And they still kept, you know, even though Bob was changing, there was still so much love for Bob and for our family, supports.

Sorry. I just feel really grateful. And, sometimes you, you know, you think things are changing so much, maybe people won't want to come, but they do. People do. They really want to help. And I think, to always remember that is important.

Host: Well, thank you for all that you've done, all that you're continuing to do. And thank you for talking in a space like this. This is not easy. Anybody who is, who's done this sort of thing will, will tell you this is, this is a very, very difficult to open up and talk about. So really, really grateful for you sharing your experience.

Is there anything that I didn't ask, anything else that you want to say that you think it's important for people to hear?

Allegra Miller: No, just thank you. Thank you so much for providing this opportunity and just such an important thing to do. So I really appreciate that.

Host: Thank you to Allegra Miller. Thank you. If you're out there watching or listening to this, it's been a very, very special edition of Health Talk Here, the UVM Health Networks, podcast. We're going to link to the DFCC, the Dementia Family Caregiver Center in the podcast description. We'll link to some programs and some resources that can help at home family caregivers care for themselves, while they're doing this, uh, incredibly important work and just again, couldn't be more thankful to you, Allegra, for all the work that you've done, and for sharing your story. This has been Health Talk and I'm your host, Philip Rau.