The Bittersweet Season: How to Adapt Holiday Traditions as Parents Age

Dementia, aging, and loss can reshape what the holidays means for our families when the people who created our most cherished traditions can no longer lead them.

In this episode, learn how to adapt long-held traditions when aging parents move to retirement homes, experience cognitive decline, or are simply no longer able to host the holidays as they once did. Remember, the heart of the holidays isn’t perfection—it’s belonging. https://bit.ly/44yXd8i

In this Episode:

• 00:16 - How Christmas Traditions Change When A Family Member Has Dementia
• 04:34 - S3E50 Rebroadcast Intro, What Does it Take to Care for a Partner With Dementia?
• 06:10 - Recipe of the Week, Funeral Raisin Pie
• 11:55 - How Becoming a Caregiver Changes the Relationship
• 14:51 - Interview with Michael Porter: Caregiving for a Partner with Huntington's Disease
• 52:16 - Outro

Chapters

• 0:00 How Christmas Traditions Change When A Family Member Has Dementia
• 4:34 S3E50 Intro, What Does it Take to Care for a Partner With Dementia?
• 6:10 Recipe of the Week, Funeral Raisin Pie
• 11:55 How Becoming a Caregiver Changes the Relationship
• 14:51 Interview with Michael Porter: Caregiving for a Partner with Huntington's Disease
• 52:16 Outro

Transcript

Hello and welcome to Everyone Dies, the podcast where we talk about serious illness, dying, death, and bereavement. I'm Marianne Matzo, a nurse practitioner, and I use my experience from working as a nurse for 47 years to help answer your questions about what happens at the end of life. Today, we are republishing our podcast about caring for a partner with dementia.

But first, let's have a look at coping with changing roles, dementia, and the emotional weight of holiday traditions. Joshua Trapper offers a perspective about Christmas traditions and how those can change when a partner has dementia. Mary's family counted on certain traditions each Christmas.

Her mother cooked the entire meal and served it on the good china, decorating the good tablecloth with holly. The centerpiece was always the same, a Royal Dalton figurine of a little boy with a Christmas tree. Her father sliced the turkey, using the carving set reserved for special occasions.

The turkey dressing was the same every year, Mary remembers. If mom tried to change it, there would be a great fuss that it was different. But eight years ago, Mary's parents moved into a retirement home in Ottawa.

Her father died three years later. Her mother, the chief holiday planner, is now 89 and has dementia. So the onus of carrying on the family traditions has fallen to their children.

Even when both parents were alive, Christmas had become bittersweet and kind of melancholy, Mary said. It was lovely that they could come and we could still carry out the traditions, but it was bitter in that they weren't the focus of the traditions anymore. The holidays are a time when family traditions take on greater relevance.

But at this time of year, adult children must also wrestle with unsettling questions. Should they hold on to cherished family traditions as long as possible? When and how must these rituals change to accommodate aging family members? For a while, Mary's family celebrated Thanksgiving and Easter at the retirement home, so that her parents could still serve as hosts, but in a more supportive environment. While the family lost out on the comforts of home, at least they were together.

At the holidays, you want to create a feeling, an emotion, an atmosphere. That doesn't mean you have to do things exactly the way they've been done in the past. It's the feelings that are important, not the details that elicit those feelings.

Reclaiming those feelings can be difficult when children are scattered across the country. When an aging parent is living with dementia or simply unable to muster the stamina for a day of celebration. Instead, families can focus on more important goals, showing aging relatives that they're not forgotten.

What happens, and it's the bottom line about holidays, is that we all feel we belong to our family, that people remember us, and that there's a connection. Often that means adapting to a family's changing needs and downplaying the importance of specific practices or objects. Rituals change because the people who are engaging in the rituals change.

Even something so basic as gift-giving can be adapted. In advance of the holidays, grandparents can be provided with gifts to give to the grandchildren who will be visiting. Children who cannot visit still unwrap their presents while their grandparents listen on the phone or connected by Zoom.

Cognitive decline shouldn't obstruct an older adult's participation in the holidays. Even if the elder cannot still understand Christmas activities, the family can still provide comfort. This Christmas, Mary will try an adaption of her own.

She's invited a woman from her mother's retirement home to join the family for dinner at her brother's house in Ottawa. She hopes the woman will be able to help her mother recollect the celebration after they return to the retirement home. Rules change, and so do traditions.

Caregiving families find ways to create new ones. When we have the good fortune to still belong to a family, every possible effort should be to bring that family together. From all of us here at Everyone Dies, we wish you and your family a happy-ish holiday and peace for the new year.

This podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording. Hello, everyone, and welcome to Everyone Dies, the podcast where we talk about serious illness, dying, death, and bereavement.

I'm Marian Matzo, nurse practitioner, and I use my experience from working as a nurse for 44 years to help answer your questions about what happens at the end of life. And I'm Charlie Navarette, an actor in New York City, here to answer questions that you may have while listening to our podcast. We are both here because the more you plan, the better prepared you will be to make life-altering decisions.

So please relax and get yourself something to eat and drink, and thank you for spending the next hour with Charlie and me in our multiverse as we talk about loving and caregiving for a partner with dementia. In the first half, Charlie talks with us about the death of the Pennsylvania's forgotten funeral pie, the sweet and somber treat of extravagant 19th century funeral feasts. He also has our recipe of the week, and I bet you cannot guess what that's going to be.

Wait, can I guess? In the second, huh? Can I guess? No. How many guesses do I have? In the second half, I'll be talking about what can be involved when caring for a partner with dementia, and we have an interview with Michael Porter, who talks about his experiences caring for his wife, Janet, with Huntington's disease. So Charlie, the funeral pie has died? Oh, actually, yes.

It's not impossible to find, but near impossible to find. It's dead. It's like poor Judd in Oklahoma.

It's dead. It was, it was... Poor Judd's dead. Oh, Judd, not Judd.

Yeah, there we go. Mr. Theater. Yes.

Yeah, um, it just, you know, fell out of flavor, flavor, favor, and maybe flavor too. Um, but yes, it's, uh, nowadays people pretty much have to have it, uh, you have to order it. You just can't go to your grocery shelves anymore.

So with that, let's, let's delve into the, the history of this bad boy. Live from Castro Obscura, the death of Pennsylvania's forgotten funeral pie, the sweet yet somber treat of extravagant 19th century funeral feasts. In August 1880, a coffin containing the body of Christianere led a procession of 1,500 relatives, friends, and members of the congregation to the Old Mennonite Church in Millersville, Pennsylvania.

Additionally, many funeral runners, a type of mourner that often popped up at Pennsylvania German memorials in the 1800s. These attendees weren't there to pay their respects. They were there for the food.

Culinary historian William Woys Weaver states, it was so common that you didn't even raise an eyebrow. The star of the funeral banquet was raisin pie, a dish so tied to the event that it became a euphemism for death itself. When an ailing member of the community took a turn for the worse, you were sure to hear someone say, there'll be raisin pie soon.

In 19th century Pennsylvania German homes, raisins meant one thing. Death was near. Friends and neighbors would cook, clean, and bake raisin pie, which became known as funeral pie.

Nancy Schmeichel, a historical reenactor, bakes her own raisin pie in an open hearth at the Landis Valley Village and Farm Museum, much the same way the site's founders baked a funeral pie centuries ago. Her recipe combines a flaky, lard-based crust with a subtly sweet, inky black filling of raisins, sugar, lemon, egg, and flour. Raisins were a luxury in the 1800s.

Prior to the seeding technology, producing raisins meant a thorough process of removing grape seeds by hand. Memorial banquets would feature multiple raisin pies and each recipe called for a pound. Schmeichel says it was an absolute labor of love.

Breaking bread after the death of a community member is an ancient tradition that transcends cultural and geographic boundaries. The meal was a way to socialize with the community, to bring everybody together under one roof and feed them. This was tied to the social memories of the era.

Providing the meal was part of an unspoken rule of hospitality. Since many guests were making the journey from far away, it was only right to host a mega-sized feast. Funeral attendants would often number in the hundreds, occasionally in the thousands.

People commonly ate in shifts. Generously feeding these large groups was also a display of status, but people who didn't have the means either went into debt or leaned on contributions from neighbors to achieve a respectable spread. Families were bankrupting themselves on these funerals, Weaver adds.

But funeral feasts continued, although with altered menus. By the mid-1900s, mainstays like funeral pie had begun to fade away. Today, most descendants of Pennsylvania Germans have swapped out raisin pies and stewed chicken for a casserole or pizza.

As raisin pie disappeared from funerary tables, it has also faded from Pennsylvania's cultural consciousness. By the 1910s, younger generations no longer associated it with death. It can be hard to find a raisin pie in bakeries today.

Even in Pennsylvania Dutch country, you need to special order it. Mr. Weaver says it's nice to enjoy a slice without the traditional accompanying sadness. It's great, he says, but I don't want to have a look at a dead body while I'm eating one.

I'm sure Mr. Weaver meant the pie, not a dead body. I hope. So, please go to our webpage for the recipe for raisin pie and additional resources for this program.

You know, many of you have let us know that Marianne's expertise has helped you to better understand how we die and how to get there. So, we ask you for your support in the form of a tax deductible contribution so that we can continue to offer you quality programming. Thank you in advance for going to our website to make your donation, as well as following us on Facebook and Instagram.

Visit us at www.everyonedies.org. That's every, the number one dies.org. Marianne? Thanks, Charlie. You know, as we head into our fourth season of Everyone Dies, we're beginning a series about caregiving for people diagnosed with dementing illness. For the last two weeks, we've talked about frontotemporal dementia, and we've previously produced podcasts about Alzheimer's disease, Huntington's disease, Parkinson's.

As a nurse practitioner, I've spent a lot of time caring for people living with dementia, teaching nursing students how to care for people living with dementia, as well as supporting their care partners in their caregiving by facilitating support groups. The real experts about caring for people who are living with dementia, though, are the family members who do the caregiving 36 hours a day, every day. So, in talking about caregiving, we have a series of interviews for you with Michael Porter, who's allowed us to see what life is like and what he's learned about being a caregiver for his wife, Janet, who's living, who at the time that we started these interviews, was living with Huntington's disease.

If you don't know about Huntington's disease, please listen to our podcast about that disease. But the Reader's Digest version of Huntington's is that it's a rare inherited gene defect. There are about 200,000 people diagnosed with it a year, there is no cure, and there are about 10 to 30 years between diagnosis and death.

The primary symptoms are dementia, movement issues, which are kind of similar to Parkinson's disease, and people also go through a violent period in the course of their illness. Many people do, not everybody. In Michael's case, Janet had been living with the disease for 12 years, and at the time of the interview that I'm going to share with you today, was receiving hospice care at home.

One thing I asked Michael about was how he balances his role as a spouse and as the primary caregiver. I think it's very worthwhile to listen to his answer about his feeling of his loss of place in his relationship with Janet. He talks about the need to cultivate a new relationship with her, that of caregiver, and his need to pull away from his role of spouse, or as he put it, he puts that role of spouse in a box and puts it on the upper shelf of the closet because it's just not used anymore.

To him, the role of spouse is gone and replaced by the caregiver role. So let's have a listen to what Michael has to say. Today we're going to be talking about a disease, and I don't know if a lot of people know of the disease or know what it's called, but we're going to be talking about a disease called Huntington's disease.

Huntington's is pretty rare. There's about 200,000 cases per year in the United States. So this rare inherited disease causes a progressive breakdown or a degeneration of nerve cells in the brain.

Because it's happening in the brain, there are huge changes to the person, both in how they're able to function, take care of themselves, movement, thinking, and psychiatric disorders. Now this is an inherited gene defect, and it's what's called an autosomal dominant disorder. There is no cure for this disease.

What they can do is manage the symptoms as it goes along, but there isn't a cure. The numbers are kind of varied. From diagnosis to death is about 10 to 30 years.

Some people say 15 to 20 years. But people tend to be diagnosed younger. It can be actually anywhere between 6 and 80 years old that you can be diagnosed with this disease.

Now childhood Huntington's is a whole kind of different disease outside of what we're talking about today. Because today we're talking with Michael. Michael's wife has Huntington's disease.

Her name is Janet. She was diagnosed 12 years ago at the age of 58. She has two siblings, and both of them had Huntington's, have Huntington's.

Michael is now caring for Janet full-time with hospice support. She's been on hospice for about a couple of months. Michael, welcome to Everyone Guides.

Thank you. I guess what would be interesting to our leaders, if you wouldn't mind talking about Janet's kind of lead up in diagnosis to Huntington's, because it's really kind of hard to exactly put your finger on that this is Huntington's. Now if you know it's been in your family forever and that that could be a possibility, it might kind of say, oh, maybe we should look at that.

But if you don't, you might not stop to think, oh, maybe that's what this is. So she was diagnosed pretty late, kind of, in life for Huntington's. Can you tell me about how that was discovered and how that was determined? Well, Janet was diagnosed as a result of the physical symptoms.

Her feet were twitching, her hands and arms were twitching. I mean, I tell people one of the big disappointments in my life was I'd be lying in bed next to her and I thought she was getting frisky and she was just sick. But they, you know, they tested her.

At first, they thought it was breastless leg syndrome, then they thought it was this, then they thought it was something else. And finally, we went to a doctor and he was explaining all the symptoms she was seeing. And he said, no, there's something more involved here.

You need to see a neurologist. So we went to see a neurologist, and this was in Washington, PA. And I always like to give a shout out to Dr. Brian Katugna in Washington, PA.

He's like a bulldog in a white lab coat. He looked at her and he says, there's something going on, neurological. He says, I will figure out what it is, you know.

And I mean, she was tested for absolutely everything under the sun. And finally, we went in for a meeting and he says, look, there's one disease we can still test for. It's called Huntington's disease.

And it's bad. And he gave us just a little bit of an intro to it. He says it's hereditary, degenerative.

There is no treatment. But he says, go home, read up on it, get online, read up about it, and then come back and tell me whether or not you want to test for it. And so is he going to do genetic testing? Is that what he was saying? Yes.

Yes. Okay. Yes.

Yeah. Unlike some other neurological diseases like, well, Huntington's and Parkinson's actually, there is a definitive test for Huntington's. And so we went home, we looked it up and we decided, well, you know, whatever it is we need to know.

And so we went back and she was tested and came back positive. Yes, she does have Huntington's. But back before the physical symptoms started, back as long as Jack and I have known each other, and in fact, as long as our children have been alive, we realized that there has never been a time when they did not know their mother when she was not experiencing symptoms from Huntington's.

Really? Yeah. Shortness of, yeah. But then it showed up prior to the onset of the physical symptoms, it was emotional, mostly emotional, a few cognitive things.

Emotional in terms of she, you know, very short flashes of temper, where she would get angry and would just blow up and two minutes later it would be all gone. Just like a firecracker going off. And then there's a symptom called perseveration, which is just like where your mind gets stuck on an idea and you just go back to it over and over and over again.

And that was very prominent in our relationship, earlier relationship, and the kids growing up. In fact, when the first conversation I had with my son about Huntington's, I was telling him about the symptoms that she was experiencing and that I was noticing, and his reaction was, well, yeah, Dad, but Ma's always been that way. Wow.

You know, and so it was just, you know, one of the advantages, if you can call it advantages, I mean, when Janet got her disease, got her diagnosis for the disease, it gave people a new perspective on her father, because her father was probably the one she inherited it from. And people just universally assumed that her father was a ass. He was a jerk.

And everybody just assumed that's who he was. And then when Janet got her diagnosis and they started looking at what the symptoms was, it's, ah, well, maybe he was sick after all. Maybe he was sick too.

Now, was Janet an only child? No, she's got two siblings. So did anybody, oh, yeah, you told me both of the kids, both of her siblings did have, do have the disease. Yes.

Yeah. And so it's, and that's the thing about it. I mean, you have, if you, you know, you get, you inherit it from one of your parents, and you have a 50-50 shot of inheriting it.

And it was, I mean, most times people know about it, it's because they're musicians, basically, or they have somebody in their family with it. I say musicians, because Woody Guthrie died of Huntington's disease. And yeah, and it's, it's a terrible condition.

And his wife, Marjorie, basically established what is today the HDSA, Huntington's Disease Society of America. And she founded it, pushed for it, funded it. And it's, it's a wonderful organization in the United States here.

But the thing about Huntington's is that even if you, is that it has a lot of diseases in, or a lot of symptoms rather, in common with other conditions. For instance, dementia is a major issue, and which it obviously holds in common with things like Alzheimer's and Lewy body and, and those sorts of things. And then you have the uncontrolled body movements, which it has sort of in common with the, with Parkinson's.

Parkinsonian movement is different though, it tends to be more like tremors, you know, fine motor issues. Whereas Huntington tends to be large, you know, more gross motor movements, like uncontrolled shrugging, or your whole arm or your whole leg flopping around. And as I've seen, you know, folks with advanced stages of Huntington's in special wheelchairs that they literally had to be strapped into.

Otherwise, the convulsions would have basically thrown them out of the chair. Now, did Janet progress to that, that movement beyond just her hands and her feet? Not really. I mean, it grossly affected her balance, her sense of balance.

She also had, at one point she had, was constantly biting her tongue, and, or biting the inside of her mouth, which is again, very common with HD. Her symptoms were primarily not physical though. Her primary symptoms were, was emotional and cognitive.

I mean, there were, who I refer to as there was her violent period, where she would get angry. And yeah, I got punched, I got scratched, I got cut, I got bit. And I mean, there were times when basically, I would just grab her, hold her in my arms, hold her like a bear hug, until she calmed down.

Because, you know, to protect her, keep her from injuring herself or somebody else. You know, thankfully, that period passed. But then there's another portion of stuff, like, you know, you're dealing with, and by the way, I guess this is common with dementia patients in general.

But she would get in my face, she would just yell, you know, how much she hated me. And how, what a mistake it was that I should, you know, she married me. You know, and these sorts of things.

And even though you know, it's the disease talking, it still must hurt your heart to hear that. Oh, yeah. Yeah.

And it's such a common thing. Yeah. I got a, you know, I'm constantly seeing notes on the support forums.

And for, you know, Huntington's, as well as Alzheimer's, and Parkinson's, and Lewy body, vascular dementia, and just, you know, dementia forums. And, or people saying, you know, how do you deal with it? And I said that you, it's really, really hard, but it requires a carefully cultivated lack of emotional connection. Because, and the way I explain it is, you know, you have, you know, you have whatever your old relationship was, say a spouse.

All right. And, okay, where you're, the one you're caring for is your husband. And so your, your relationship has always been wife.

Okay. But now, because it's a disease, you have another relationship that is coming to into the coming to the fore, which is caregiver. And the problem is, is that sometimes the wife relationship can get in the way of the caregiver relationship doing what it needs to do.

Right. And so what you and I said, it's, I know, it's incredibly hard to do. But you need to be able to figure out how to sort of take that role, that wife role, put it in the box and put it up on a shelf for a while.

So you can concentrate on being caregiver. Because you can't do both at the same time, because one will get in the way of the other. And Michael, do you think that you ever then get to take the box of being a spouse down again? Oh, yeah.

Oh, yeah. I was reading a book about a woman whose husband was suffering from Alzheimer's. And the way she dealt with it, she took her wedding ring off, literally put it in a box in her bedroom.

And then at the end, after he passed away, and she had done everything she could care for him, then she took the box down, put her ring back on. And now she's no longer caregiver. Now she's widow again.

Now she's a widow. But what I'm asking... For her, that was how she dealt with it. But I mean, on a shorter term basis... Do you ever get to take the box down and just be Janet's husband? Yes.

Yeah. And it hurts. And you do.

And I mean, those are the times when you just sit and you cry your eyes out, remembering. But the important thing is to remember not just the pain and not just the sorrow, but to remember all the good times and to sort of be in that place. In other words, people tend to remember, like, say, their weddings.

People remember their weddings, but it's overshadowed by what comes that came later. Okay. And that, you know, the trick is to learn to remember those memories and be in the place of those memories.

In other words, be with them on that wedding day. There is no future yet. There is no Huntington's disease yet.

There is no Alzheimer's yet. There's none of the family problems that everybody always has yet. All you have is one other person that you love and you're getting married and you're exchanging vows.

You know, learning to be in that moment with them right then. So, can you tell me, you know, I don't know if this is too personal, but when, in Janet's current situation, when do you get to take the box of being her husband down? Oh, in the evenings. Recently, I wrote about, she went into a five-day, well, it turned into a six-day, you know, temporary inpatient hospice.

And so, my daughter Frances and I, we had six days where we didn't have to take care of mom physically and emotionally too, for that matter. But it's, and so, there was a time, you know, for that, you know, being able to relive and rethink some of those things and remember. But also for me, and one outlet that I have that a lot of people may not or don't, is that I write.

And so, a lot of times, my writing is an opportunity to take that box down, open it up, put all the good stuff in it, and to relate some of those things and to replay some of those things and to remember all the good things, you know, that my wife did, that my wife accomplished. Like, for instance, you know, if you ever, if you're a woman and you enjoyed playing sports in high school or in college, and you live in the era of Title IX, then you owe Janet a debt of gratitude. Because in the 1970s, when Janet was teaching school, middle school in Massachusetts, she worked, of course, for the implementation, for the creation of the Massachusetts State equivalent of Title IX, which then became the model for the federal Title IX law.

And, you know, my Janet, all five foot four inches of her, she coached girls basketball. And it was... I'm only laughing because it must have been kind of cute, you know, somebody so little. Oh, yes, yes, yes.

Her idol was always, there was a really short guard, spud something, I forget his last name. But he would always, you know, he maneuvered so well and got around, you know, the big men couldn't stop him. He literally would run underneath them.

But, you know, and Janet was always involved in politics. And she's addressed at the state level, she's addressed, you know, legislative assemblies and hearings and these sorts of things. Back when, you know, before you had computers and the internet and whatnot, she taught ninth grade math.

And she would sit every night and she would put together an individualized lesson plan for every one of her students with no computers, no laptops, no PCs, no internet, nothing. How did she ever do that? Oh, it was just, I mean, she worked just unbelievable hours, but that's who she is, you know. And, I mean, you know, one last example is the other day we were talking, and she asked me about her neurologist, Dr. Furst-Deming.

And she said, how's Dr. Furst-Deming doing? I said, fine, she's doing well. I said, why is this? She isn't feeling bad or anything, is she? I said, well, why would she feel bad? Is this because I'm dying? Because she wasn't successful? And I just, you know, she was, they're literally lying on her deathbed. And she's worried about her daughter, about the emotional state of her doctor.

How incredible. She sounds like an incredible woman. She was.

She is. She still is. Because with late stage dementia, you wouldn't have that kind of conversation with somebody.

So is she still cognitively intact? There are big holes. Okay. It's like Swiss cheese.

I mean, it's not like, at least in Janet's experience of it, dementia isn't like this metal gate coming down and you don't remember anything past four days ago or something like that. It's like Swiss cheese. There are things she remembers clearly, and there's things that she doesn't remember at all, like family relationships.

The other day, she was talking about our two daughters. And we only have one daughter. And I said, you know, our daughters? She says, yeah, Frannie and Catherine.

Well, Frannie is our daughter. Catherine is my daughter from a previous marriage. And it's like, she's in her mind and in her heart.

She has adopted Catherine as her daughter. Really, really sweet. Yeah.

And one of the things I've noticed recently is she sort of lost contact with her sense. I don't know how to explain this other than like sense of place. She'll be lying in bed.

She'll ask me to come over and help her. I said, what do you need? She says, well, I need help lying down. Well, you are lying down.

Oh, I'm lying in the bed? Yes. Why does it feel like I'm standing up? Well, I don't know, but you're not. You're lying down in bed.

Oh, okay. Thank you. So she loses track of things like that.

But I mean, one of the- And considering she had like the balance problems as part of her symptomatology, it kind of makes sense, the particular place of damage in her brain. That makes sense, right? Oh, yeah. I mean, one of the things you need to understand is that anything that affects your brain is going to... It's like modern cars have the black box that's under the hood that controls absolutely everything.

And because everything goes to that same box, you can have bizarre symptoms that make absolutely no sense. I had a car one time where if I turned on the right turn signal, the radio would turn off. It made absolutely no sense.

And I went in the dealer and said, you're going to think I'm crazy, but every time I put on the turn signal, the radio goes off. He says, the right turn signal, right? He says, yeah. He says, yep.

Know what the cause is? It's because everything runs right through that box. And there was a known failure mode in that model car, with that particular model of controller. Something would fry on the inside where you turned on the right turn signal, it would cause the radio to go out.

And the guy had seen it before. It was a known problem. And so you can have a situation like that where things that seem to be totally disconnected suddenly have an impact or suddenly matter.

There was a young African-American man in our local support group that one of the things that hunting did for him is it totally messed up his body thermostat. I've seen him sitting in a 72-degree conference room in a hospital, just sweating bullets. I mean, just water just coming off in rivulets.

Because he was feeling so overheated, and he was. I mean, the way he was getting by is he would have these ice packs that he would strap to his chest to keep his core body temperature down. Otherwise, his body temp would have gone up to like 104, 105 and just stood there, stayed there until he died.

Then you have the physical symptoms, you have the emotional symptoms. There's a story, you get 12 Huntington's patients in a room and you'll have 12 completely different sets of symptoms. Right.

There'll be some commonalities across some of those people, but it's a whole different story. And sometimes it depends on the day. You'll get a whole different story too.

Oh, yeah. I mean, this is why when I first started writing, I wrote about Huntington's. And then I started realizing that people who are dealing with Huntington's, Parkinson's, Lewy body, what the results in England is called vascular dementia.

What it is in the United States is the dementia resulting from like a stroke. Right. But all these people, they're confronting a lot, 99% of the symptoms that they're going to be experiencing are going to be the same.

So I started getting into contact with these other groups on Facebook and getting tremendous response to folks that are dealing with all these different forms. I mean, one thing that was amazing to me is the number of different medical conditions that can produce dementia. Right.

Yeah. It's mind boggling. Yeah.

Literally, right. The other thing too, what we were just talking about how we cope with that is you said, you put that role of spouse in the box and you put it away when you're being the caretaker. And I used to facilitate an Alzheimer's support group.

And one of the ways that the group would conceptualize some of the ugly things that their significant other was saying to them was that they would say, that's the disease talking. That's not, you know, that's not Janet, that's the disease talking. And then that, you know, and it kind of results in the same sort of thing, like what you're talking about and that you separate yourself from them.

Like they're not, because you see a lot of daughters and daughter-in-laws who are caretakers to wives. And, you know, when someone's screaming at you, how much they hate you, or like, you know, you said, you know, I shouldn't have married you, you know. If you take that as they're really saying that, it breaks your heart.

But if you're able to realize the disease is talking and it's not being very nice right now, you kind of shut that off and, you know, have a key line or something, some way that you respond when your feelings are being hurt. Does Janet realize or remember when she has those kind of outbursts? Sometimes, sometimes she has in the past. And a couple months ago, she, as the, her angry phase was sort of tailing off.

One day, she, she was talking to me, and she says, you know, I just want you to know that I really do love you. You know, I know I've said some things in the past, but I do love you. And, you know, there are, there can be moments of clarity.

And, I mean, they're priceless when they happen. And, like, when Janet's dad was dying, Janet and I had gone to see, visit him with Janet's mom. And we, we, at that point, we did not know about Huntington's at all.

And we were, we were in his room. And, and he said, you know, Mina, his wife, you know, why don't you take Janet downstairs and show her the cafeteria in this place? They got a really good cafeteria. And I was like, cafeteria? Really? Just go show her.

Okay. Not sure what this is about, but okay. So, as soon as they're gone, he called me over, and he held his hand out, and he says, Mike, I just wanted to say, I'm sorry.

You're a good man. Thank you for marrying Janet. And he shook my hand.

And, I mean, this is a man who at one point had, had declared very loudly what he wasn't even going to attend our, our, our wedding. And had thrown fits about, you know, that he'd, but it was just, you know, and the thing is, is that, you know, one of the things I've learned is that it's a matter of education. It's a matter of learning what's going on.

I, for instance, at one point when our son, Michael, was a little like four or five, he, he did something. Grampy got angry, just blew up at him, said something nasty. And Michael just went off crying because, you know, how could Grampy say that, right? Well, I went, went to check on him, and one of his older cousins, who was, well, there was two of them.

One was 10, one was 10, one was like 12. And two of them had him sitting, they had him sitting down in one of the backbridge rooms and explaining to him the facts of life. They, okay, Grampy said something upsetting.

Don't worry about it. He just, sometimes he just gets upset, but you give him a couple minutes and he'll be fine. And that'll be, you know, and they were explaining, you know, they, they had no idea about Huntington's or anything else, but they just, they had this, they had a sense of, all right, this is what happens.

We don't know, it doesn't, don't, not sure why it happens, doesn't matter. But, you know, give him a couple minutes and he'll be okay. And they're, and they did a good job, as good a job talking to him as I ever could have.

But, you know, that one of the things I've noticed about, about Huntington's is that when you get your, your diagnosis, it's half, oh no, and half, oh yeah, where suddenly things that, things start making sense. Yeah. Why things happen, you know, like Janet's older brother, um, who has since died of an unrelated heart condition, uh, everybody's thought he was a drug because he wouldn't, and they think, they said, well, he came to his daughter's wedding, you know, intoxicated.

And then the wedding was at like nine o'clock in the morning. And, um, and what it was, was the chorea is a very common symptomology is people would have these very broad movements and they look like they're drunk. And, and so everybody looked at the way John was moving and the way he was acting and his speech was slurred.

And they said, oh, he's snoggered. How could, you know, what kind of a drunk is he going to come to his own daughter's wedding? You know, and, and then, but then after Janet got her diagnosis, she would call, talk to his wife, explain the situation to her. And so John went in next, next neurologist appointment, which by the way, you were seeing one of the main neurologists at mass general.

I mean, it was, I mean, this was not like, you know, some guy at a little country clinic somewhere. I mean, this was like one of the foremost neurologists probably in the United States at mass general. And it hadn't even occurred to him to test John for Huntington's because, you know, when Jenny said to him, we need you to test him for this.

And he says, what for? Did you realize how rare a disease that is? And she says, yes. And his younger sister just got diagnosed with it. Oh, so yeah, let's, maybe we do need to test for that.

You know, I mean, it's, it's, you know, Janet's neurologist here at, in Houston, a doctor for stemming. She, she teaches at the McGovern medical school here in Houston. And she set up a session where Janet could come or Janet and I both would come and talk to her second year medical students about Huntington's.

And, and just so they could, they should, so they could see that. And she allowed herself to be examined and, you know, the neurological tests and all that kinds of stuff that they do. And basically be shown off like a prize guinea pig.

And she, but she did that because she's, she's a teacher. And students will never forget what they learned from her either. Oh, right.

Oh, absolutely. You know, I, one thing they're asking, asking me to comment and one thing I said, for one thing, for Pete's sakes, don't ever just play the odds. Is that there may be, you may have a situation where you have a disease like Huntington's, where there are like 30,000 cases in the entire United States.

That person sitting in front of you might be one of those 30,000. You don't know. Don't ever just play the odds.

And it's, like the clinic Janet goes to covers the western half of Louisiana and, and, and all of South Eastern Texas. And the clinic has about a hundred, a hundred or so patients coming to it every month. I mean, that large of an area is, I mean.

Yeah. And that's what you have. Well, you know, Michael, this has been such an incredibly fascinating chat.

And you, you're so articulate with what's going on with Janet and even what's going on in your own head. And I really appreciated you letting our listeners hear, you know, about this story. And I think there's so many other parts to the story that I'm, maybe we can get you to come back and talk more.

Oh, absolutely. Yes. Absolutely.

I would enjoy that. And I want to let our listeners know that Michael has a blog that he does. It's called Reaching Out in Love.

And you can find it, reachingout, all one word, R-E-A-C-H-I-N-G-O-U-T dot L-O-V-E. And go read his blog. He's as good a writer as he is in terms of telling his story.

So Michael, thank you. Thank you to Michael for that interview. And please stay tuned for the continuing saga of Everyone Dies.

And thank you for listening. An octopus's garden is unlike sand through an hourglass. This is Charlie Naborette.

And from poet E.E. Cummings, unbeing dead isn't being alive. And I'm Marianne Matzo, and we'll see you next week. Remember, every day is a gift.

This podcast does not provide medical advice. All discussion on this podcast, such as treatments, dosages, outcomes, charts, patient profiles, advice, messages, and any other discussion are for informational purposes only, and are not a substitute for professional medical advice or treatment. Always seek the advice of your primary care practitioner or other qualified health providers with any questions that you may have regarding your health.

Never disregard professional medical advice or delay in seeking it because of something you have heard from this podcast. If you think you may have a medical emergency, call your doctor or 911 immediately. Everyone Dies does not recommend or endorse any specific tests, practitioners, products, procedures, opinions, or other information that may be mentioned in this podcast.

Reliance on any information provided in this podcast by persons appearing on this podcast at the invitation of Everyone Dies, or by other members is solely at your own risk.