Caring for a partner with dementia: a conversation with Fay Martin

"You don't know what's going wrong. And you have all these theories, but it's a long time before dementia is one of the hypotheses..."

Fay Martin is a retired social worker who lives in Haliburton County, a small rural community in Ontario. She cared for her husband, who had dementia, until his death in 2022. He died with - but not of - dementia, sparing them the ravages of the later stages of that disease. Nevertheless, it knocked their lives sideways. 

Learn more about the Strengthening a Palliative Approach to Long-Term Care project at: https://spaltc.ca/

Transcript

SPEAKER_02 0:00

Welcome to the Strengthening a Palliative Approach in Long-Term Care Alliance podcast, exploring challenges and best practices and palliative care approaches for individuals in long-term care.

SPEAKER_01 0:14

Dr. Faye Martin is a retired social worker who lives in Halliburton County, a small and underservic rural community in Middle Ontario. She cared for her husband who had dementia until his death in June of 2020. He died with, but not of dementia, and so they were spared the ravages of the later stages of that disease. Nevertheless, it knocked their lives sideways. Welcome to the podcast, Bay.

SPEAKER_00 0:41

Thank you very much.

SPEAKER_01 0:42

I'd like to begin by um asking you to tell us a little bit about your journey as a social worker and your career and how you chose that career and how it may have prepared you to become a caregiver later on.

SPEAKER_00 0:55

The skill set of social work is very useful when you're dealing with any kind of dysfunction in your family. I became a social worker because I didn't want to be a teacher or a nurse or a secretary, which were the three other jobs that were thought of suitable for women of my era until they became women when they were supposed to go home and raise kids. And I wanted a career. I started out doing child welfare and then decided I knew I did not know enough to do that well. Went to get a master's degree in order to learn more about that, and really just wanted to help with um with little problems, and I was much more interested in kind of systemic problems. And so when I graduated, my husband of that time and I went off and did community development in the outports of Newfoundland for a couple of years, but then a time to start a family, so we came back to Toronto. We then started a little not-for-profit, which basically was going to support people who'd been doing what we'd been doing in the field. We were working with indigenous people at a time when that was a not a safe thing to do. We got basically totally crunched by the system. And I decided that by then I was single and had um two little kids. So I thought, okay, I got to brush off my MSW and go back and be a proper social worker. And at that, that's how I met Michael, my husband, who had dementia. So then I was a proper social worker for the next few years, mostly working in child welfare. I then switched and worked in other venues, the hospital system, the legal system. I worked for Family Court Clinic. And then I did a PhD to basically take some time to figure out what was my life all about. But then there was this opportunity to set up a program up here in Halliburton County, and I fell in love. So I took that job setting up a new agency here in Halliburton County. Uh in 07, I knew that I needed to retire because I knew by then that he was sliding into dementia and that I needed to put more attention to making his the last chapter of his life good. Because if I didn't do that, we were going to come apart. So since 07, my volunteer life has been dedicated to doing uh affordable housing, um, which is a huge field, very satisfying, and caring for Michael. And then after he died, I kind of implemented my last chapter strategy, which is to be a writer. The long answer to a short question.

SPEAKER_01 4:06

What an amazing journey, though. I imagine so many lessons learned along the way. Tell me a little bit about the caregiving journey. It sounds like you have a really busy life, and then you have a husband who has dementia. How do you manage?

SPEAKER_00 4:22

Things happen in your life, in your relationship, and you don't know what's going wrong, and you have all these theories, but it's a long time before dementia is one of the hypotheses about what the hell is going wrong with our relationship. As I was doing the PhD, Michael had a diagnosis of cancer, and it was treated by massive radiation. And actually, very much in hindsight, I think that that treatment tipped him into dementia. He had a family um genetic orientation towards it. So the plan was I was gonna do the PhD, get the academic job, get everything nicely in place, and then he would make his midlife pivot. There was not a job here for him. And he had some sequelae from the cancer that he was dealing with. So there's all that stuff going on, and we are having marital difficulties. And I have to say that we had an unusual perhaps relationship. We fell in love working together and all of our working life, we have more or less worked together. We were amazing as a work team. Each of us did what we were good at, and we talked well with each other. We had a very good life. And then when I moved up here, we had amazing difficulties. We knew there was going to be changes in the relationship post-cancer, and then finally he came up here, and I thought, okay, that's gonna resolve the issue somewhat. They didn't, and the fights were all about him refusing, I would say, to be the intellectual partner that he had always been, and to be like he was dependent, like you couldn't have conversations that built. You'd say something, he'd say the same thing, and he said, Well, that's what I just said. And you say, No, that's what I just said. And I was saying, why am I staying with him? It struck me, ah, this is dementia. It's not that he won't do this, it's that he can't.

SPEAKER_01 6:25

What are those early signs of dementia that people should be looking for?

SPEAKER_00 6:29

My theory is that the way dementia presents is pretty characteristic of the person. So there are general descriptions, but what is important varies depending on who the person is and uh their circumstances. So the things that drove that undermined our relationship were his lack, his the diminishment of his intellectual capacity, because he was basically an intellectual and an activist. But and I'm thinking, okay, cancer took a big slice out of him, but it was a change of personality, if you like, which I attributed to cancer, not to dementia, for a very long time. We had to get to a pretty severe stage of anger before I was willing to consider that possibility because denial, right? You really don't want to admit that that is what's happening because it's really hard to find an upside to that. And then once I decided that, yep, okay, it was dementia, I'm gonna, I am with him, right? I was prepared to do what was necessary to make the last chapter of his life as good as it could be for as long as it could be. Once I made that decision, I did a good job, I'm gonna say. Um, and so he had a really good last chapter.

SPEAKER_01 7:59

You're a life partner and now you have a new role, caregiver, added on to life partner. I wonder if you can tell us a little bit about how that felt, but also what would you advise people who are going to be moving into that role of life partner and now caregiver?

SPEAKER_00 8:18

The name of my memoir is Dementia Widow, because what struck me was that I was a widow. I was not a wife. I was a widow. I was still living with the man I married, but he was no longer the man that I married. When you're caring for a husband with dementia and you're not saying out loud he has dementia, nobody knows that you're a widow. So you are alone in that sense. He was quite far along before I started saying that out loud to my women friends. Was there stigma in telling your friends early on? Yeah. Um disbelief. Because the other thing was, very intelligent guy, excellent social skills, right? When he died, people going, geez, I talked to him at the New Year's party. He seemed fine to me. Are you sure he has dementia? So part of the loneliness is the denial. The other thing is that dementia is very situational, right? So they function differently one day from another, one moment from another, one circumstance from another. I went to our GP, who knows us both quite well, and said, I think Michael has dementia. And she said, I don't think so. He seems fine to me. So she sent him off to be assessed. And then she phones me back and says, It's as I thought. He doesn't have dementia. And then five minutes later, she calls me back and says, uh, well, he passed the test, but then he couldn't find his way out of the clinic to the parking lot, and he couldn't figure out how to use the his phone to call me to say, come get him. So she said, I think we better have a gerontologist see him.

SPEAKER_01 9:55

Did you and Michael have a conversation about dementia? How did you approach that? Because it sounds like you were you mentioned you were having fights and things and and you're noticing things. How do you approach that conversation?

SPEAKER_00 10:08

Well, it's not one, it's many. And we didn't use the word dementia for a long time. In fact, when that gerontologist she said to Michael, you have dementia, probably Alzheimer's, and he said, I do not. My mother had that, I am not like your mother. And she said, You have the same disease. So that word was anathema to him because his mom had had a very bad death, his sister had had a very bad death. No wonder he was terrified of that for himself, and no wonder he was so desperate for me to save him from that death.

SPEAKER_01 10:51

But he must have had conversation before that to get him to the appointment, right? To do sort of say, I think something's wrong, you know, we should do something.

SPEAKER_00 11:02

They were always sort of specific decisions, right? Or conversations, like where he would say, I can't do that. Or I would say, you know what, I I think I'd I it'd be better if I did that. Taking over the money, that would be an example. Like he had always managed our money. And I got a bit concerned about that and took some actions to protect us. He would say, I don't think I want to do this anymore. Or I think maybe you should do this. So there were those kinds of tacit admissions of his inability, but they were sort of like it's your turn to do this, right? Now, we had practiced in that because after he had cancer, that I would say is how we negotiated the dementia thing too. He would talk about his forgetfulness, he would say, My short-term memory is shot, but I'm a writer, and that's because I live in, you know, my writing world a lot of the time. So we had all these explanations about his short memory, and he would acknowledge publicly that his short-term memory was not good. But all of us do that, right? I mean, it's with aging, your short-term memory is not good. It fails. And we all say that, and it's and it's true. But he didn't say, I am fading into dementia. He didn't do the second half of the sentence, and nor did I, for a long, long time. We never called it Alzheimer's, we called it dementia because Alzheimer's was such a hard word for him because of his mom and his sister. And I never in his presence told other people he had dementia until we were into palliative stage. By then he'd acknowledged it.

SPEAKER_01 12:33

I want to ask a little bit about two things. What advice would you say that caregivers need? What tools do they need to be a good caregiver? And then also how do they look after themselves? Because you talked a little bit about, you know, having some space for yourself, but it all of the things that need to happen to be a caregiver.

SPEAKER_00 12:56

If, as in my case, my husband was my primary intellectual partner, and he's no longer able to fill that role, find yourself other intellectual partners. Beef up your friendship circle and give yourself permission. So you have to give yourself permission to be selfish, right? Which is hard for women to do in particular. The second rule is develop your spidey sense for being a martyr. Being a martyr does no good to anybody, not to the person who is the martyr, and not to the person who is being cared for by the martyr. Because, by definition, you're resenting what you're doing. And if you're resenting what you're doing, you can't do it lovingly. And if you can't do it lovingly, you can't do it well. So I really beefed up my cadre of women friends, and I went out for lunch and I did things that I'd never done before. I organized like a time-away holiday, went traveling with a friend of mine for a week. Having set up the situation so that my downstairs neighbor was in place, I would say do a cognitive analysis of you, your cared-for person, the circumstances, figure out what the gaps are, and then very methodically move to fill them. This is no time for politeness or lack of courage. You just need to figure out what needs to be done and do it. I think women are pretty good at that. We do that with parenting all the time. In fact, people who haven't been cossited probably already have a lot of that skill set. If you've been cossited, if life has been easy for you, you may have a bigger learning curve. I don't know. I can't really speak to that. The how do you take care of yourself? This one kills me. Oh my God, the literature just kills me on this one. And also a lot of the system, they say, Are you taking care of yourself? But they have no idea. And the people who are looking from the outside aren't seeing your reality because A, you don't show it, and B, even if they see it, they might not recognize it for what it is. When you say, My husband has dementia, I don't know if you've noticed. They say, Oh, I know what you're going through, my mom had dementia. I'm thinking, you have no idea what I'm going through because a parent having dementia is really different than your partner having dementia, right? I'm not demeaning or dismissing or undermining that experience in any way, but it is not the same thing.

SPEAKER_01 15:24

This has been fabulous and I think so valuable for people who may be moving into the same role that you were in. I'd like to finish by asking you if you could tell me what you would say to someone who is just going down the beginning of this journey with a loved one, and what advice should we give them?

SPEAKER_00 15:44

So, what would I tell people? Hmm, be as honest as you can with yourself and with others about what seems different to you. And be prepared to consider that that's just the way that is. And if you're gonna be good at it, you're gonna do it very subtly. Because if you do it openly, you're saying to the world, this guy has dementia, and you wouldn't believe what I have to do in order to keep him in working order. So you can't do that. It's not respectful, it's not loving, and your job is to make that as good a life as you can.

SPEAKER_01 16:24

Thank you so much for speaking with me today, Faye. It's been a really interesting conversation.

SPEAKER_00 16:29

You're welcome. Thank you for the opportunity.

SPEAKER_02 16:34

You've been listening to the strengthening a palliative approach in long-term care podcast. For more information about our project, visit spawn ltc.ca.