Dementia Dialogue; Season 3, Episode 31

What We Do Here Counts: Sharing Stories of Spirituality and Caregiving

Transcript of interview with Matthew Dineen and Janice Keefe by Rev. Faye Forbes and Lisa Loiselle

David - You have tuned in to our final episode in our spirituality series. I want to thank Reverend Faye Forbes and Lisa Loiselle, our co-hosts, and all of the participants, singling out today, Matt Dineen and Janice Keefe.

Matt is the husband of Lisa, who was diagnosed with Frontotemporal Dementia nine years ago at the age of forty-three. They have three children. Matt has become an advocate for people who are impacted by dementia and is deeply rooted in his faith tradition.

Janice is a distinguished Canadian researcher on caregiving and is a professor at Mount Saint Vincent University in Halifax. Today, however, she shares her experience with us as a caregiver to her mother and how spirituality has provided her with a place to find respite and strength as she provided support to her mom.

Faye - So welcome to you both. So to begin the podcast today, can each of you share your personal story in relationship to being caregivers?

Janice – Matt maybe I'll go first, if that's okay?

So my caregiving experience comes from caring for a mom who had dementia. And I'm from a very large family. I actually have eight siblings. I am currently in her house, in her bedroom right now. So I talk about spirituality and the presence.

I really learned a lot from her, even though I was a professor and had been doing research on family caregiving for many, many years (three decades). My experience was primarily positive. I was very much blessed by having a lot of support. My mother was blessed by having so much support from her community, from her children and from her grandchildren. So I may have a bit of a Pollyanna experience

Faye - Thanks Janice but I imagine it's different coming from that personal perspective as opposed to coming from the teaching and research perspective.

Janice - Absolutely. I mean, I think there was a higher power that said to me the month that I became the Canada Research Chair in Aging Policy and Caregiving, my mother went into the hospital with bowel cancer and I became a full-time caregiver. And I swear, as soon as someone came to give me respite, I was out the door. I didn't even want to talk to them. It was like, okay, it's catching up with you.

Faye - And Matt, what's your story?

Matt - Well, as Janice alluded to, just what the world, the ironies that can come upon us.

Back in January of 2013, my wife, Lisa, at the young age of forty-three, was diagnosed with Behavioral Variance Frontotemporal Degeneration, or BVFTD as it's known and life has changed since then, to say the least.

She now resides in a long term care home and has, next month that will be eight years.

So shortly after her diagnosis, a series of events happened that, just for her safety, necessitated that she enter long term care. And she's well looked after there. And safe and getting her needs met.

But it has certainly rocked my world. I'll be honest, it brought my faith life to really a crossroads, where either all this stuff, as a lifelong Catholic, raised by my parents, my grandmother, I think of her dearly, the influence that she had on me, that it was either the rubber hits the road here and my world kind of did come crashing down, including my faith life. To this day I’ve been putting it back and in a very good spot and have learned a lot through life's experiences.

Faye - I know you became a single parent at that point when Lisa went into long term care. And with that personal crisis that you went through, how did you deal spiritually to keep your spirits up and to keep positive?

Matt - Well, Faye, as a minister you probably won't be surprised by this, but I did a lot of introspection, a lot of hard time in prayer.

As a Catholic, I had kept my, I'm an early morning riser and I had for a number of years, even up until Covid hit, an hour of adoration and it really came to the forefront that the experiences that had been put in my life prior to, I truly believe had set me up for what happened in 2013.

And if I may, I'll give you a small example. My dear Aunt Lorna passed away in 2001 and I wanted to honor her memory in some way. I didn't know how. And at the residence that she lived, where actually currently my father now resides, they were seeking somebody to deliver large print books from the Ottawa Public Library. And I have a fondness for  books, a love of reading. And I thought this would be perfect. And I did that for I think fifteen years and each one of the kids, so my children now are twenty, eighteen and sixteen, and some of them weren't even born at that point, but they would come in with me three or four times a year and they were exposed to the environment in a long term care home. And I would always say to them before we went in, “Go up, give them a hug” and you would see their faces light up.

It didn't take long until after Lisa had gone in there that I realized, and I truly believe this, the Lord was preparing not just me, but the kids, because when they stepped in there, when they stepped onto that locked dementia unit that Lisa is on, it wasn't novel. They had been there before. They saw the faces light up. They knew how to interact with the residents.

So to answer your question, I think it was God's hand in this, but also just having been raised where I saw my parents do volunteer work and always that there was somebody worse off than you. I can remember just say, look over my right shoulder and setting the kids down when they were twelve, ten and eight and saying, “Listen, this is devastating. We will get through this because somewhere there are people that are worse off than us”.

So we need to and I hate to use the term because it's corny, but make lemonade out of lemons. And I'm grateful that I've got a wonderful cast of very good friends, have a very good support network that have allowed not just me, but the kids as well to excel and to accompany us in this journey, this ongoing journey.

Faye - So what are some of your experiences, Janice, with spirituality and for caregivers and people in long term care?

Janice - I think one of the things that I always think about and I think it's been exemplified here by Matt, like just the dignity of the individual. That we all have vulnerabilities. We all have challenges. And it's really accepting those and knowing that there are ways in which we can support each other.

We also have to, as caregivers, we have to take care of ourselves. And that does involve both physical care but in my world and it's about having that spiritual care to take the time to have the presence.

Matt talked about early rising and just having some time for reflection. I love to go in the woods. I love to go snowshoeing. I have a little, my brother has a little cabin back in the field and I'll go back there and put on a fire and read a book. Like all of those things I think are really helpful to be able to find respite.

I'll just tell you a quick story, too. I was having a difficult time and I had a young child and my husband passed away quite suddenly. And just in terms of spirituality, I sat on this bench and I fell asleep because grieving and we all grieve whether we have actually lost someone or we're experiencing anticipatory grief, I guess. And anyway, I fell asleep on this hard bench and I woke up. I didn't even know where I was, but I looked up and there was this absolutely gorgeous tree. And all I could think of was there is someone, a higher being that's going to help me through this. And all of those branches are my family and they're holding me up. And that's what's going to get me through.

For some people, it's their family. For some people it's their friends. It's just that sense that even though you may be alone, you're not really alone and if you have that faith, there is something or someone that's going to see a different side of what's happening.

Lisa - I'm thinking back over this past year, there's been a lot of difficulties, a lot of barriers in our lives, a lot of hurdles that we have to overcome. What are some of the barriers that you find for yourselves, for other care partners that you've encountered and even for people living with dementia, what barriers exist that prevent them from continuing to experience and express their spirituality?

Matt - As somebody who goes in every day, and I'll elaborate on that, to see my wife, Lisa, one of the greatest barriers during this whole time of Covid has been the inability to have physical contact.

So I have seen firsthand the devastating, devastating effects of isolation, especially upon seniors. I've seen it with my own wife and I have vowed that come hell or high water, unless there's absolutely a reason to keep me from going in each day, I am in there to see her. And I've really come to not just appreciate, but see the importance of physical contact where I hold her hand. We actually dance now. When I come into the room, her room, all of a sudden she will put her arm on my shoulder. I'm like, “Whoa, whoa, whoa. Okay we'll get to dancing in a few minutes” but it's just the necessity for touch.

My own students, we read about as infants the importance and the effects of touch. But I've seen it. I've seen it with my own wife. And I must share this, that the other day, two days ago when I left, one of the nurses said, “Matt she's so happy”. And I just take great pride in that because it breaks my heart to see other residents in there who and I'm by far the youngest care partner on that unit. And this whole Covid, it has impacted some of the more senior care partners who cannot come in, who may not be able to get tested twice a week so that we don't miss any days with their loved ones. So there's been all kinds of obstacles. But for me, that was a major barrier, was that inability and having a pane of glass just inches apart.

You know, I'll never forget this summer, Lisa turned and I just saw her walk down the hall and it was this, it's a memory I will never forget of her walking away. And I would have done anything to go through that glass and just to hold her. And I'm grateful now that we as our partners, we have that opportunity to do so.

Janice - That's a wonderful, wonderful observation, because I think this area of Covid and the whole restriction on visitation, really, as you said, Matt, brought so many people out of that very important contact.

I think, I personally think that for many people who weren't able to be with their loved one when they may have passed away, that it's just such a terrible guilt that’s over them.

I think support for them is so incredibly important right now. I mean, we all set out to be, I mean, I remember trying to be a perfect caregiver; to be there, to be whatever you had to be when you're supposed to be. But it's so incredibly frustrating sometimes. And when you don't do the right thing, which may be what you learned in a support group, for me, I taught to others, when I make that mistake, you can feel so guilty and that doesn't help anybody.

So I think we have to be a little bit kinder to ourselves, too, as family caregivers, to be able to just have a little bit of space and to be able to recognize no one's perfect, too. I think that's a challenge sometimes.

Our whole society is like we're not allowed to talk about our faith, like you're not allowed to talk about it at work and you're not allowed to talk about it here. And I think that's a real struggle. It certainly is in my profession.

There's something very spiritual and very intimate about being able to pray for someone else or with someone else, and I don't think we do that enough, frankly. Whether you believe in a higher entity or you just are reaching out and wanting to care for someone. I think we need to do that more.

Matt - Janice, something you said earlier, I wanted to make the point here that, it was when you were talking about being on the bench and we are physical and spiritual. We are embodied spirits. And so much of what we go through as care partners or caregivers focuses only on the bodily. I've said this before and I've advocated, I would love to see an intake list for spiritual needs that is more than two lines on a piece of paper.

Janice - Which is like, “What's your religion?” or something like that. Nothing to do with meaningfulness or the quality of your relationship or the things that give you purpose. You don't have to belong to an organized religion to want to be doing things that are meaningful to have purpose in your life, right?

Faye - Just the fact that both of you have said that when you go into long term care or you become a caregiver and you can put the smile on that person's face or you can touch them and complete that relationship, even if it's just holding hands or dancing or listening to music or whatever it happens to be, I like to think outside the box and say that spirituality is more than just your faith belief. It's something that makes your heart sing and puts a smile in your eyes and on your mouth, and it gives purpose to your day, to your life.

Lisa - And maybe that's one of the questions that should be asked when people relocate to long term care: what makes your heart smile?

Faye - I think too, Lisa, we have to be cognizant of the caregivers as well. They require as much spirituality as the person in long term care.

Matt - I've got a box, a huge box in my basement with all the files of everything that transpired. And I don't like going into it unless I absolutely have to. And I did have to go through that as part of an FDA (we're doing a meeting in a couple of weeks) and it was painful. But one of the positives is I took and I wrote down to the best of my ability everything that was brought into this house by people. And that journal will one day go to my children. And they've seen and this is where early on in this horrible, horrible journey, there were bright spots because it was people coming in, right?

We’re called to be the hands of St. Theresa's. We are the hands and feet of Christ. And it didn't take long for me to realize. And, Janis, one of the greatest learning moments for me on this journey was the ability to put aside pride and say, yes, I need help. And I think, I shudder to think where not just what my well-being, but the well-being of my children, had I

been too prideful and say, “Well, you know what, I'm okay, thank you, but I'll take the gift certificate, but we're good. I don't need any more”. It was such an opportunity. But what really melts my heart is that my kids from a young age saw people unloading in some cases it was a truck, but trunk full of food. Our freezers were packed, gift cards for them and that stuff they'll never forget. And I just think that was foundational for them, growing and becoming the wonderful young adults that they've each grown into. And I'm grateful. So there are bright spots along this journey. And somebody once said it's really your mindset. You can find gratitude in many places.

Lisa - So I know both of you in different ways, do a lot of advocacy work with regards to spirituality, with regards to support of other care partners. Would you mind sharing just a little bit about the kind of work that you're doing and that help other people, again, in their own lives?

Janice - Go ahead, Matt, please.

Janice - Okay, well, I must begin by saying, even though I've been teaching for twenty-five years, I am very much at heart an introvert. Faye, if you remember when we did our speaking here at the G7, I think you had to hold both of my legs down. I was so nervous before going to that podium with all those French dignitaries.

I realized again in this journey that the Lord is using me in ways I never could have imagined and giving me the gifts to educate, not just educate others, but to help them along their journey. One of the examples is I belong to and have for a number of years through the Association for Frontal Temporal Degeneration in the United States, an organization that's been my lifeline. It was a men's group. So all of us have a spouse who has either passed on or currently has one of the three subtypes of FTD. And they actually asked me about a year ago if I would take over. And so that's been really rewarding being able to help others navigate.

I don't have all the answers and nor do the gentleman look to me for all the answers. It's a position I never thought I'd be in, but to be able to help others is very, very rewarding because others have done that for me.

Janice - It's great. That's wonderful that you're giving back so much. I hesitated because my advocacy is of a different format. I think just having been in long term care space and researching and trying to improve quality of life of older residents in long term care, trying to improve policies for family caregivers has been a long time.

My PhD thesis was on women and work and how to create better policies in employment. So that whole research really drove lots of thinking and writing and lobbying. While lobbying, trying to provide the evidence to demonstrate policymakers that we have got to do something. And that led to increasingly I always had worked with policymakers, but over the last decade really started working with people, family members, with volunteers, with people who have dementia, have a diagnosis of dementia, to help to advise us on our research projects. Are we actually doing what we're supposed to be doing? And so that's kind of how I met Faye, maybe through the Dementia Strategy initially in Nova Scotia.

But I've done a lot of work more on that sort of the Royal Society Report on Restoring Trust and Covid-19. And I will say the whole devastation of Covid and long term care and the lock out of family was really traumatic. I know it was not in the same way as the experience of family members, but being stuck in this house in self-isolation and not being able to do anything, pushed me to a point where I've written so many opinion articles that I now I'm just thinking, “Oh, I can do that. I can say what really should happen”.

So it's changed my way of thinking. It's not just about the peer reviewed papers. You do need the evidence. But I think for me, I've gotten a lot of rewards of trying to advocate for the family members. We have a project right now looking at family visitation patterns and yeah, so that's where I've gone down. I think I think it's great.

I think the other thing, I don't know if I, I wonder about this: when we think about spirituality and meaning, I know I'm not supposed to ask the question, but I found in my research is a lot of negativity around caregiving. And there is a lot of stress, there's a lot of frustration, there's a lot of burnout. But I don't think we always recognize some of the positive aspects, like the way that people can actually contribute to someone's quality of life by being able to go and visit and dance with them like Matt was talking about. And what the positive benefits of being able to participate, to have the honor and the privilege to participate in someone's journey and someone who is very vulnerable and to know that you're doing the best you can do. I think that's really, really important to say. I don't know how you feel, Matt, about it. Is there too much emphasis on the positive aspects of caregiving?

Matt – No but you highlight such a key point, Janice, and that is we need to be grounded on hope. We have to be. We have to be people of hope. Here we are. This whole podcast is about spirituality. There's so many other things that can pull us down. I'm reminded when I do take the time to pray that, you know what? This is just a brief time here.

Hopefully it's a long one, but it's the next one that counts the most. And it's what we do here that counts. And that all comes down to love, how we love.

I'll be honest right now, you talked about writing. Maybe I'll get you to write the letter for me. But I just saw something a couple of days ago, actually was two nights ago. And I read it and I sat at my table and I was devastated for about ten minutes. It was almost like a numb set over me because back in 2013, I got involved into the world of advocacy work when I called an MP, Claude Gravelle, who was putting forth the first Private Member's Bill for calling for National Dementia Strategy. And since that time, I've been involved in the political side and have learned a lot. But I just read how the Senate with Bill C7 is sending back the amendments to Parliament, and one of those is going to be now for those who think that they're going to be diagnosed down the road with dementia, that they can have put it in their directives to have euthanasia or assisted suicide. And I read that and I reread that and I wanted to make sure that I wasn't misreading it. And I was heartbroken because, and this speaks to what you were just saying, Janice, when I see Lisa, she can't carry on a conversation anymore. But I need to see her each and every day because when I go over there for the hour and a half, two hours, twenty minutes sometimes, she takes away all the negatives around my day and I'm truthfully able to forget about everything when I'm with her. And I thought, here she is. She can't communicate. But yet she in cognitive decline, is able to give me more than I could ever imagine. And she doesn't know that.

And one of the people I've been blessed to get to know along this journey, the Reverend

Kathy Berry, she wrote a book that's called When Words Fail. And it really reminds me that I don't need to have words with Lisa. God speaks to us in so many ways. And that's why I think this whole issue around what the Senate is proposing is just heartbreaking because just because somebody has a diagnosis of dementia does not make them any less of a person.

And this is the conversation that we need to be having, not just around in our places of worship when they open up. And that's the work that I've been undertaking over the last two years. But I think this really needs a wider conversation, respective of people's beliefs but we need to acknowledge that we're both body and spiritual beings, not just the bodily.

Lisa - Can you talk a little bit more about the work that you're doing as far as supporting people within congregations?

Matt - So my involvement with Dementia Advocacy Canada, we were formed back in 2018, right after we were in Ottawa. People from around the country gathered when they were with the New Dementia Strategy that had just come out. And so we came together and we formed Dementia Advocacy Canada.

So it wasn't long after that that a question came in from somebody up in I believe it was Whitehorse asking about their place of worship and that it wasn't very dementia friendly. And so one of the executive members said, tapped me on the shoulder and said, “You know, would you be interested in investigating this?” I'm absolutely. Well, I have to tell you, I jumped into this area of investigation and I jokingly say that I embarked on a brand new four year undergraduate degree that I knew nothing about. And I'm still involved in it to this day.

I've been very, very fortunate to have had the opportunity to speak to some of the key people who have done research around the world. I think of John Swinton, Dorothy Linthicum, a whole array of people who have really educated me. So what I hope to do with that Lisa is, is to bend the ear of different faith congregations, be they from my own Catholic faith, the Canadian Conference of Catholic Bishops. And just to get dementia onto, get them to listen to say, “Okay, what are we doing in terms of how we communicate with people with dementia and their carers? What steps can we take to help people with dementia take part in worship? And what kind of an environment are providing? Are we providing a safe and welcoming environment for them?”

So there's many different initiatives that can be done. There's not one cookie cutter model of doing this. But I think and I tip my hat because it's been very hard getting in to some particular faith offices to speak with them and this was pre-Covid. But I have been very fortunate to have had conversations with different faith communities around this. And I hope that they continue.

In my area, actually on my street, there's a Jewish synagogue. And right before, days before Covid, I was scheduled to meet with the Rabbi. And so it's just a matter of having the conversation, putting these questions out to the key leaders and then helping them maybe look at one or two steps and then maybe broadening it.

So I hope with the help of different organizations across Canada, we might be able to get this conversation started because I know what's being done in small pockets. But if it can be a united front, that would be really great.

Janice - That's all we all want, I think, is to recognize that we're all human. We have these facets of spirit, mind and body, and we have to nourish all of them.

Lisa - What advice would you give a care partner at this time?

Matt - I would really encourage perhaps listeners, I'm going to offer two things: is to take the time for self and be selfish. Be selfish, because if you're not well the house of cards falls. My other one: I would really challenge people out there, no matter what your faith denomination is, have that conversation with the key people in your place of worship. And I don't mean by that the minister or the rabbi or the priest, they're busy enough. Ask them what can we do to begin the process of making our place of worship more welcoming so that people with dementia and their care partners feel welcomed, that they're involved and that they belong?

Lisa - What about you, Janice?

Lisa - Wow, you know, Matt is a hard act to follow. I got to tell you. I agree with everything he said, and I'll only say it in a little bit different way. I think around a piece of advice to be at peace with yourself, to recognize what your limitations are and not to be so self-critical or so guilty, but to also know that you need to take care of yourself first in order to be able to be present with others. So I think that's kind of important. Critically important, I would say.

Faye - So if we consider ourselves a vessels or jugs, whatever you want to call us, and we're full of life and love for the ones that we're caring for, if we empty that vessel or jug without replenishing it, how can we continue to care for those people?

Janice - Exactly.

Matt - So true.

Janice - That's exactly, that's exactly it. It’s about being able to reach out and see the water in the desert but you're absolutely right, Faye, to be that vessel.

Lisa - Well, I'd like to thank all of you for joining Faye and I today.

Matt, thank you so much for all of your insights. All the best to you and your family.

And Janice, thank you so much for your time and for sharing those personal pieces of your life.

Thank you so, so very much for your time today.

David - Thanks again to Matt and Janice, Faye and Lisa for today's episode.

A special listing of resources on spirituality and dementia can be found on our website under resources.

I am impressed with the range of guests and approaches that Faye and Lisa brought to us. We hope that this series helps remind us of the importance of honoring spirit that lives in all of us.

Our next episode will return to the topic of Covid-19, this time with a look at the impact of Covid-19 on people living with dementia.

Thanks to the Center for Education and Research on Aging and Health at Lakehead University and to the Public Health Agency of Canada for their continuing support.

My name is David Harvey.

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