Medical Aid In Dying

with Melissa Smith-Wilkinson &
Genevieve McLean
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Join me today as we talk with a former caregiver, Geneviève McLean. She was the caregiver to her husband who was diagnosed with Dementia in 2017 and chose as a family to do medical aid in dying. She shares her grieving process and the decisions that lead up to making this choice. Her bravery and boldness to share her story gives us a glimpse into a topic that is normally taboo.

​End of Life Planning, National Institute on Aging

Melissa Smith
Welcome to Caregiver Wellness podcast, we're really glad that you joined us today. I believe this is going to be a very powerful conversation. It's something that is normally quite taboo. It's hard to talk about grief and the dying, but stay with us. This is so important. Today, we welcome Geneviève McLean, and she talks about her recent loss of her husband. And how she used the medical aid in dying and what decisions she's made in that process and how it's affected her grief process now. She is utterly delightful and so beautifully balanced in terms of feeling the grief, but also uniquely expressing it in a public way. I think you are going to be profoundly touched by this conversation. Thank you for joining us. And we look forward to continuing to share these kinds of resources with you.
 
Melissa Smith
Thank you for joining us today. I have my friend Geneviève McLean, and she is a beautiful mother and also a recent widow to her husband, who she was a caregiver for, who had Alzheimer's. And so I've been wanting to have a conversation with you for quite a while, actually. And you were you were quite eager and our schedules didn't quite align. I feel really thankful that you have taken some time to be with us today.
 
Geneviève McLean
Well, the pleasure's all mine. Thank you for reaching out.
 
Melissa Smith
My pleasure. So this is an incredible topic we're going to dive into today and one that I think will hit a chord with quite a few people. And especially with what we're going through right now, an incredible time of being in the midst of a pandemic. But also those that are caring for loved ones with dementia and Alzheimer's are grappling with everything, magnified everything ten times harder than it should be or that it would that it was before March. And so I have to say, following you on Facebook and your life post caregiver is not only inspiring but very freeing. I think to grieve so publicly and with a sense of of both joy and sadness- to be able to hold both of those is incredible to watch. I thank you for being so just both poignant, but also real and really honest about your experiences.
 
Geneviève McLean
It's not an easy year. It's not an easy path. No, I won't sugarcoat that. But at the same time, I think a lot of people don't know how to talk to you about death or any kind of very hard situation. But one thing we can all guarantee ourselves is that we will all die. But yet, at the same time, it's the biggest taboo subject around. I just feel that I'm not the only one going through this. There's no possible way. I feel if I put it out there, then it makes other people reach out to me and say, oh, not really with me. Or I can so relate to that. Thank you so much for clarifying that for me. Whatever it is, one specific example is, you always say to somebody, let me know if I can do it. That person has no idea what it is they need. If you reach out to them and say, can I come over for a cup of tea or can I bring you a dessert or can we go for a walk or do you need a magazine or whatever it is, be more specific and concrete with what you have to offer. That person is going to say yes 99 percent of the time simply because they have no idea what it is they need and when they're going to need it. You know, and when I need it, it's too late. Quite honestly. Right? Because most of the time it's just someone I need to talk to. Really.
 
Melissa Smith
Well, I'd love to I'd like to back up just a little bit, and if you're willing, I would love to tell you have you tell me a little bit about Duncan and your family.
 
Geneviève McLean
Duncan was the love of my life. We had been married almost 27 years and been together almost 30 we have we met in Montreal, and we traveled around quite a bit. We moved to Connecticut where both our children were born, and then we moved back to Calgary. Not that I should say, moved to Calgary without knowing anybody, without a job. And we settled here, and we've been here almost 20 years. And he was a wonderful man. He loved people. He was genuinely interested in people. He just wanted to know about them, their family, what made them tick, what were their interests. He loved to play games. He was a huge sports fanatic. I don't mean watching sports. I mean participating in sports. He was a good athlete, just good. And everything he loved. I mean, you name it, he did squash and hockey. He did everything. It was a tricky thing, but he was a wonderful man. He was just a really happy go lucky guy.
 
Melissa Smith
And so when was he diagnosed?
 
Geneviève McLean
He was diagnosed end of June in 2017.
 
Melissa Smith
And when you all found out, where did you go, what did you do? Was it just a period of like, oh my God?
 
Geneviève McLean
He and I had gone through a period of oh, my God for a year already because he kind of knew- he self-diagnosed himself. He kind of knew what was going on. And by then, me, too, we knew about a year before. But by the time we get to see the specialists and every one and go through all the various tests that you go through, it took us a year and a bit and that brought us to June of 2017. Then we made a decision to sell our house. We sold our house just to make sure the finances were going to be all in order. We knew he was not going to be able to keep working, so I convinced him to quit working at the end of September that year, 2017. He and I, we took off for two months to Europe, and we went to the south of France and Italy, and it was the most amazing trip ever. We had a blast, but there was a lot of things that we did. You know, we had to put our wills in order. We had to have conversations about personal directives, what do you want at the end of your life? Should you get to that point? And those are incredibly difficult, hard conversations when you're in your early to mid-50s. You know, these are not conversations you're thinking you're going to have with your spouse on the opposite. You think you're going to have conversations of, OK, the kids are out of the house now. Where do we want to go? Where do we want to travel? What do we want to see? What do we want to do rather than OK, what do you want in death? Who is most important to you and how much time do you want to spend with these people? Where do you want to go? What do you want to do? What is most important to you right now that you need to? Fill your life with and yeah, those kinds of conversations are incredibly hard and with him we had even harder conversations because he had said right from the beginning that he did not want to go in a home, and he did not want to stay at home. His choice was to end his life through medical assistance, all legal and everything like that in Canada anyway. And, those were really hard. Tough conversations. Still the weight of them just blows me away.
 
Melissa Smith
Medical Aid in Dying (MAID) is only legal in a handful of states in the United States and depending on where you fall in this discussion, I'm with you. It's important to me, as I've reflected on my own loss in my life with my stepmom, and that the person should be able to choose. That person should be able to have their wishes fulfilled. And the horrific thing about this disease is those that are left in terms of how they care, and they're gone mentally. 
 
Geneviève McLean
That was a big thing for us. We talked a lot about: do you want to be in a home? What kind of end of life care do you want? Because, you know, it's not for everybody. And you may even think that you want death if you're in a certain situation. But once you're actually in that situation, you kind of go, oh, actually, I'm not sure that that's really what I want to be really faced with. It's not necessarily for sure. And that's the path to go down. It ended up being the path he wanted, and I supported it and so did the kids. But even that path, that's not an easy path to take. But there are a lot of other options out there. But you have to understand what they really need, what they really entail and what it's going to take. Because how many years is that person going to be staying in those institutions and whatever, because eventually you're just not going to be able to care for most of the time anyway. I don't think it's worth a lot of exhausting. And he was even very far into the disease. It's tiring. It's draining. It takes a lot out of you.
 
Melissa Smith
How did you decide on timing?
 
Geneviève McLean
You know, that is not ideal. There is no right time. The right time is when he felt they were right. And in Canada, you have to be still there- They are debating about it the government right now, but you still have to be aware mentally. And so when you have dementia, that is a very fine line, and I think Duncan was very aware of what was going on with this decision. I think we would all agree that he might have gone a little early, but who knows what would have come down with the disease, sometimes incredibly slowly or incredibly quickly. And he was already having a hard time reading, writing. You know, you come to the kitchen, didn't know what he was doing there, and you kind of had to help him through. So, you know, he was getting there. So when is that right time? So he kind of decided if he was. You really felt he wasn't coming, and the conversation we had so many times was: what is living? Breathing? Or is living actually participating in life on your own terms? And for him, it was participating in life on its own terms, and that had gone away for at least two or three years. He really felt that the timing was now. And he wanted to go back to Toronto, and he wanted to go back to see his mother and to the family cottage on the lake. That's a big thing in Ontario. And so he wanted to go and spend some time there and did that with his brothers and sisters and his mother. And so they had that family unit time together. We got to see a lot of his high school friends, and they had a dinner and outside social distancing and all that stuff. And so he got to see them, and he got to do a lot of really nice things. He was very much at peace on the day. It was amazing, actually. I was stunned because was not easy day, but. You have to do what you have to do.
 
Melissa Smith
I think your circumstances are incredibly brave and just you chatting with us today publicly is also incredibly brave. I mentioned in the very beginning of our conversation about you grieving publicly. How has that ebbed and flowed for you? Is it because I think there's a misperception out there about the stages of grief as they were originally coined. They're not and in my opinion, in any order.
 
Geneviève McLean
No, they really are not. I think some of them sort of say, well, I'm coming today, and then I'll come again tomorrow. I didn't know how else to do it. I tried journaling, and I wasn't getting anything back. I was releasing it, but it wasn't giving back. So for me, I'm one of those other people, and I just need to reach out to people. I need people to reach out to me. And it really gives me so much energy. By putting it on Facebook, I was really scared to do that because Facebook is not necessarily always the best platform for a lot of things. But I put it out there one time. I just thought, OK, just try it and see. And if it's really bad, never to do it again. And it was anything but; it was amazing. The feedback I got not only helped me, but it was helping others. 
 
It's telling other people that grief and death is not something you need to just shove aside and pretend it didn't happen. We're going to be strong, and we'll muddle through this anyway. Well, you know, there are a zillion emotions that come every single minute of every single day. And you're just kind of like on this wild rollercoaster ride; and nausea aside, you're on that ride, and you are going to stay on that ride. I found that by reaching out occasionally, it kind of grounded (me), which I thought was really interesting. Because first off, it put out there, I wasn't carrying all that emotion anymore. And it spoke to other people, and it kind of helped them do. I felt that was a win-win.
 
Melissa Smith
It definitely is. It's been extraordinary to witness. I think if I were listening as a caregiver and curious about this process, what kind of advice would you give them, even just starting to think about it or explore? You mentioned a few things to consider in terms of what their person with dementia or their loved one is going through. What they want to see. What they want to do? What  are your dreams? What else should they consider, or what advice do you have?
 
Geneviève McLean
Well, there's a few things. I think they really need to have the heart to heart talk between the important people. For us, we knew our kids were the most important people to talk to. Duncan and I made the bigger decisions on our own than we talk to the kids about. But if the primary caregiver and the person with dementia are not on the same page- between those two, maybe three people, whoever they are, you have to have the oh so dreadful talks. You just have to have all of them, all of them. Because should that person lose capacity, you have to have an understanding of what it is they wanted to try and provide as much as possible what it is they want. I think for a caregiver, (that is) one of the most important things. Family, friends, whatever are very important to do things with. We were very lucky with the neurologist. We had a social worker that we could talk to that dealt with people with dementia. So not only was she able to help Duncan, but she was there for me. She was there for my kids either as a unit or separate. I worked for a very long time, and I talked to my kids a lot. And eventually they kind of said, you know, Mama, this is beyond us. So more of a role for them, quite obviously. And they said, you need to talk to someone who can help you. And that's when I started reaching out, and it made such a difference. She understood everything. And she made me feel not guilty about all the emotions and feelings that I had that included the thought. And maybe I didn't love this person anymore, even though I was madly in love with this person. Because he wasn't the same person. And that's OK. And it's normal to boot.
 
Melissa Smith
I really appreciate that you just said that because I think so many times, no matter what the illnesses (we're specifically talking about dementia here) but I think irregardless, whether we're going through a particular illness, or the person we care for is, if it is within our possibility and realm to get professional help, it can really be life altering. I think so many times we go to, and I see this over and over again, where we go to friends, and we lean on them so heavily. They have no idea what to say or do. Or even family members. Truly, there are wonderful resources. I think everyone needs to have their list of five. These are the people I could go to for this, this and this. But, they're not professional care. That is such a really important point. I appreciate you saying that.
 
Geneviève McLean
(Lean on) your professional care, and they (family) have stuff going on in their own lives. Yeah. They're leaning on you just as much as you are them. But really, you need at least an hour every few weeks of undivided attention whereby you could talk about what is going on with you and maybe the other person you're taking care of. (Where they ask): what is really going on with you?
 
Melissa Smith
I totally agree. And if there's someone out there listening in and thinking that their funds can't find those kinds of resources, I would encourage you to please reach out because I have a huge list, and we have a list on our website as well. Many professional resources that you can find help, people who offer sliding scale, and people who offer their services for free, as well as, paid services. There's a variety out there that I think people are just not aware of or where to go to ask for help. I think that's really important. 
 
What was one of the best resources you used in Calgary?
 
Geneviève McLean
Well, like I said, it was this social worker. She really was a life saver. I also had a really good friend. Lisa Poole is one of those dynamo wheels. Her father has dementia.  She has always been one of those people who was like, I'm doing this. I'm doing that. And we were going down that road she was well entrenched in. People all across our country and beyond. 
 
Melissa Smith
Lisa has a magazine that she produces and publishes called Dimentia Connections. If you're in the Calgary, Alberta area, it's an incredible resource. If you're not, they also have it online with a lot of Canadian resources.
 
Geneviève McLean
So there's pages and pages of resources. It's amazing.
 
Melissa Smith
It is amazing. I'd love to circle back around. You know, you mentioned having the difficult conversations, but also flowing out of that or just these emotions, and I really appreciated that. You said the emotions are normal, like your reactions are normal. I think you hit on one specifically that I think many caregivers deal and grapple with, which is guilt.
 
Geneviève McLean
How can you not feel guilty because you're not equipped to deal with these live wire situations? My husband wasn't the same. So every time I expected the same, but it wasn't this was a different person, and it just really broke me every time. I don't know why I had to bring myself. I learned patience, which I'm not very strong on, but it is a 24/7 never ending. Guess what, the game really, quite honestly, because you never know, and it's like dealing with a mature one year old. You just don't know who you're going to get. And from one second to the next, and you just don't know.
 
Melissa Smith
I would love to end our conversation with circling back to something that you said that was also really beautiful. You said you asked him: How is it that you would really want to live? How did you phrase it? What is important to know, or how do you want to participate? How do you want to participate in life? I think that is an absolutely beautiful question that we should be having with ourselves and way before medical issues happen and our families.
 
Geneviève McLean
It hit the nail on the head there, and that is just not something that occurred to me at all before. Well, you go through it every time you try to raise your kids properly. You try to be a good couple. You know, a volunteer within the community, do exciting things, but will just minding your business and then all of a sudden your knees are taken out from under you, and it slows you. So to have some of these conversations may be a little bit before when it's not so dire probably is a good thing. And I think whatever it is you're going through, I think to have conversations generally about what it is, dementia is not something that has it's not something that is taboo. And to have a conversation around the fact that it happens, there's a lot of people in the United States and there's a lot of people that end up having to mention it's not just the person's disease, and it doesn't need to be looked upon as. Because it's not and it's cool, I'm not going to pussyfoot around that, but at the same time, there are still (human), there are still moments that you can have fun and cherish. 
 
Melissa Smith
Listening to you talk about how you really chose to cherish and capture memories and his last days are truly astounding and beautiful. My hope is that it will give some hope and comfort to a lot of people listening. I love how in this world we are all different, and we all choose our paths. I think what's beautiful in hearing your story is that it's your story, and your lived experience. And then on the flip side of that, you have chosen very public grieving, which has enabled us to kind of virtually surround you with a sense of love as well. I am so edified by that. So thank you for continuing to do that. The bravery is amazing.
 
Geneviève McLean
Thank you very much. 
 
Melissa Smith
You can reach out to us at caregiverwellnessretreat.com  We're happy to connect to you so that you can get a few more resources as well. So I just can't tell you enough how grateful I am for your openness, honesty, and your generosity. It's beautiful. This is an incredibly difficult path that you walked. Just as you said you wouldn't wish it on on anyone. I think it's also such an eye-opener for us to really take stock in the moment. How do we want to live today? How do we want to show up?
 
Geneviève McLean
And well, I want to say thank you to the people who are going down this path.
 
Melissa Smith
I hope that we can keep offering these kinds of resources while our goal as an organization isn't necessarily dementia, education is really about the care of the caregiver and helping better understand what the caregivers needs are. And this is absolutely one of those needs, grappling with these difficult emotions and choices and decisions. I wish everyone who is able to listen today that you perhaps take a moment after listening to to sit down and take a deep breath, maybe even write one sentence about what you would hope for your future or what you would hope for your loved ones future, because actually making a plan and just sitting with it for a little bit is one more step in that direction and takes the fear out. Yeah. So thank you again. I'm so grateful for you. I appreciate you. 
 
Geneviève McLean
Take care everyone.
 
Melissa Smith
Thank you for joining us today for this podcast and this special episode with Geneviève. I am still really moved and incredibly blown away by our conversation, and I have a feeling you might be to. Feel free to drop us a line in an email about what you learned. Of you have any questions for her, I'm happy to pass that along. Our email address is CaregiversRetreatInfo@Gmail.com. It'll also be in the show notes for you as well. And if you enjoyed this episode and any of the others, we highly recommend that you go back. There's a wonderful conversation with Ruth Dennis. There's a beautiful Qigong practice and conversation  There are so many right now that we're building as a resource for you in terms of wellness. And we're really grateful that you're a part of this community. If you enjoy it, I hope that you please share  So take a moment to send this to perhaps your support group or anyone else that you feel might benefit from this. And if you are so led to offer a donation you can click on the link there to buy us a cup of coffee or go to our website at caregiverwellnessretreat.com and you can sign up for one of our free retreats. We have two  One is an OnDemand one, and the second is a retreat that is instant access that was recorded here in Santa Fe, New Mexico. And we have one coming up in Houston, Texas, that will not be in person. It will be live, however, and we're looking forward to premiering that on January 29th of 2021. And thank you again for making time to join us today. We're really glad you're here.