In this episode, Steve and Virginia are joined again by friend and caregiver, Roger Lisabeth who describes his experience in end-of-life planning while his wife Lucy is still alive. Roger emphasizes the importance of being properly prepared when the day arrives and describes some important details many of us may overlook when planning a funeral.
From the University of California, Irvine, this is UCI MIND’s, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias.
Welcome to Spotlight on Care. Thanks, everybody, for tuning in. We're excited to have Roger Lisabeth back with us talking about an important topic that we all may forget as we're caregivers, as we're moving along our journey. And it's going to be the end-of-life planning. And before we start off, I'm going to throw it over to my partner Virginia to see if she's got a little piece she'd like to share, and I'll share something and then we'll start by interviewing Roger.
Okay, well, thank you, Steve. I have to say that I'm glad you're not interviewing me today because I… Looking back, I did little, very little precious little planning for the very end. I was trying to remember exactly what I did when that happened. And I do remember that I had a meeting with the funeral home. They had some suggestions for us. I think I said yes. To some of them. Whatever. My sister-in-law, Janine Lovullo Simpson is a professional singer. So, I knew she would sing. Whatever. And I somehow managed to put together a video montage and I looking back, I have no idea how I got that done. But I did. I had pictures of mom from when she was a baby to the current day. And I put that together. God knows how. And I really think looking back, the whole thing was pretty much of a blur. So, I'm glad that we have our guest with us today.
Yeah, and uh Virginia, I would say you did a much better job than I did. But I think that's the key. Your word blur is is a good word for me. I had a conversation with Patty my wife early on in her in our journey together with Alzheimer's, to confirm some of the discussions that we had had previously. Things like, okay, you know, you want to have a burial or you want to have cremation? Or, you know, we're going to have a tribute to you. Is that okay? You know, those kinds of things to make sure we were on the same wavelength that we had discussed. You know, before, and I think that helped. But some of the things that Roger is going to go through. I had no I had no planning for I really didn't know what to do when they came up. And I wish I had this list of things to cover. So with that, Roger, why don't you give us a little bit of your background? Well, first, let me introduce you properly. Roger and I have been friends for several years now. We have been members of a men's caregiver group together. We've shared a glass of wine or two together. And so we have become good friends. And Roger's wife Lucy is still living, yet he has had the experience of helping others through this process of end-of-life planning. So Roger, welcome. And would you talk a little bit about you know, your background with Alzheimer's and Lucy and just kind of where you're at at this point in time, so people have a frame of reference.
Sure. Lucy was diagnosed with Alzheimer's in November of 2010. So, we are in our 12th year of dealing with this disease. It’s a slow progressing disease in Lucy's case. However, the last three years have been quite difficult. And it has caused us to have to find a home outside of our normal home for her where she could have better care than I was able to give her on my own. She you know, I think that most often we try to break this disease down into maybe trimesters, and if it's we said trimester, she'd be in her latter part of her third trimester. I've often heard the disease broken down into seven different stages. And if we look at that, I'd say she's in her six, maybe even seventh stage.
Maybe you can give a frame of reference. How old is Lucy? Now?
Lucy now is 73 be 74 in a couple months, and she was 62 when diagnosed.
Great, thank you. Where are you in end-of-life planning? And how have you helped other people with this topic?
I'll answer the first one second, if you don't mind, I have I've helped other people. And the reason why I've been able to help other people is because of the poor job that I'd done in the past, with planning for our or lack of planning for the passing of my parents. When I look back at it, like Virginia had mentioned earlier, it was just a blur. And I remember, especially after my mother's passing, that I, you know, when you get that quiet moment, and you're reviewing, I said, man I wish I had, and I wish I'd had, maybe I should have done this. And I wonder what others would have thought. And you have all these questions that you really, it's hard to answer anymore. And then one thing that really stuck out for me is that in my father's funeral, which I had done a little better job of planning. I remember to this day what the key song was at his services. And it was a song done by Frank Sinatra, called “I did it my way”, which was appropriate for my father. My mother, I can't tell you what we played and that’s sad. So that was my learning experience. And from that, yes. It's not people just dying from Alzheimer's, but you know, family members who have cancer, who are in end of life and cancer, they've got an uncurable cancer. And, you know, it's, it's, they're still alert, there's still time to find out what it is that, you know, they might like as you discuss Steve with your wife, Patty. And so Lucy and I did some of that talking before it got to be too late. You know, now it'd be far too late, but Lucy's had some input regarding what it is that she wanted. And, you know, may well to, you know, to the extent that was appropriate, but, you know, we decided, okay, we want to have cremation, we're not really interested in burial. We knew that, you know, the religious people that we are, we knew that we want it or we know that we want it to be a religious environment. We know that we don't want to have a be a memorial as much as a celebration. So those are the kinds of things that Lucy was involved in before it got be too late.
Good. Why do you think people don't prepare for this? What do you think's going on?
It's hard. It's, you know, no one wants to plan you know, plan for a death, right? Well, that's probably the shortcoming that we all have that we don't plan for it. And, you know, we don't do things in our life that we might wish that we had done had, we still have the time. It's not an easy subject to talk about. It's not an easy subject to think about. And there have been people that I brought it up to who kind of look at me and yes, they think, you know, who the heck do you think you are? You know, I'm not ready to do that. And that's okay. If that's what they want. It's okay. But it's important to give yourself the choice.
That's a good comment. Do you feel like I mean, it's obviously an emotional time. What do you think's going on during the time itself? And maybe it's harkening back to your experience with your parents or watching other people go through a what do you think's actually happening that you can maybe touch into if you're listening to this podcast and think about well that could happen to me?
Yeah, you know, the thing is, as been mentioned, by both of you, it's a blur. And the idea is in my response, from my perspective of it, the idea is to eliminate the blur it’s an emotional time, you know, and I think we all know it's difficult to make decisions when you're emotional about the decision. And there are a lot of things that you have to make a decision about, you know, the easier ones or whatever I already talked about, you know, you want cremation or do you want to have a burial you know, what kind of service do you want? Is it going to be a religious services are going to be what else you might want to do? But there are a lot of other things like examples are what what is the song The one song that you want to be sure that you remember your loved one by or that everybody else will remember this person by? And that can be important, as I mentioned already, and other smaller things, you know, flowers, okay, do you really want flowers and if so, what You're going to do with them afterwards. And you know who's going to be present at this ceremony? Whatever kind, it might be, you know, who is it that you invite? How do you invite them? Do you do it via email? Do you do by personal call? What's the list of those people? I kind of refer back to the family tree, you know? Or have the phone tree? You know, who is it that you're going to call and be sure that you don't overlook somebody? And, you know, maybe start even thinking about what it is that you might want to say? Or what is it that others may want to say, who may want to say something? You know, in my case, I've got, you know, we've got two adult children. And Lucy has a brother who happens to live in Colorado, and, you know, their brother and sister, he wants to have some input, and he doesn't want it to be, hey, I got 10 minutes to make a decision, what do you want to do? So giving everybody time to think through how they want to do it, so it's the best Memorial possible. The good, I guess, I don't know if this is good news, or bad as we only get one chance at this is there's no redo’s, there's no redo’s.
That's for sure. Let's go back and talk about this. This other people part, because I think that's, maybe we can delve a little bit into that you use a good example of a familial brother of a loved one who would want to participate in the process of some of these decisions, whether they decided to speak or not. So how did you decide? Have you reached out to him already? Or,
Yeah, yeah, I have reached out to him, his name's Tom. And, you know, the reach out is to, you know, let him know what I'm thinking and see if there's something that he may want to add, or may be uncomfortable with. You know, and also, I haven't done this part yet. But, you know, I'm sure that he's got childhood photos that I might not have. And, you know, I would want to have those as part of it. Because, you know, we don't want to reflect just on the last few years, because those definitely aren't the best years. So you want to reflect on all of the good years and use the good years to overshadow those who may not have been so good toward the end.
What about your children? That's kind of a related category have, what do you think about their involvement? And how difficult was it is to talk about that issue with them at an end of planning type timeframe?
Well, one of them was grateful that I've done the plans and the other one not so much. And
okay, you got two options, right?
Yeah, exactly. Well, I got I got a couple different looks at it. And I respect both, you know, one is kind of glad. Okay, we don't have to deal with this dad. Thank you. And, and the other one, you know, probably just assumed that I not bring it up. And, you know, I probably knew that before I brought it up. Because the one of the children has been a more of a let me know what I need to know but don't overshare. And so, there's, I don't know, I respect that as well. You know, they want to remember their mother in their way.
Yeah, that brings up another point we've discussed a couple of times in other podcasts, but that relatives, children, family members, etc., are not going through this process at the same speed, or in the same way that you are, so to assume that everybody's on the same page you are. It would be nice, but it's not reality. They're they've got their own relationship with your loved one, and, and they're going to take their own time, my daughter, for instance. You know, it's been a couple of years for her to finally get to the point where she's talking about it regularly and feels like it's something she's comfortable with my sons were slightly different. So I don't know that that's male or female. I'm just sharing that as a as an issue that I think you're bringing up here.
I believe each one's a little different, Steve.
Yeah. Let's talk about communication, written and otherwise, whether it's email, phone call, whatever it is, I think that's kind of an interesting topic. Did you kind of break these out into categories in your mind in terms of these are the kinds of people I'm going to call because they're so close? Or did everybody get an email? How did you think about that process?
Well, I broke it down into segments. The first segment is that of my personal calls, which are to family members, maybe the very closest of friends, those kinds of people that you see on a regular basis. Then the next list is those that you know, you email back and forth with maybe once a month or even only once a year, but knowing that they would like to know. So there's that group of people, then my son has his group of people that you know, are his high school friends that he still communicates with. And then my daughter's got her group of high school friends that she still associates with. And the responsibility for reaching out to those their groups is up to them. And how they want to do it is up to them. So you break it out in categories, personalization being you know, I think most important, and even to the degree to make life easy for yourself so that you say what you want to say the way you want to say it. I don't think it's a bad idea to record or type out or whatever it is, so that when it comes time to do it, and you're really stressed with all this emotion, that you do it the way you really want to do it, because you have a clear head while you're thinking to it oh, by the way, have the opportunity to redo it multiple times if necessary.
Are you referring to the email communication or verbal communication? Are you talking about at the memorial service itself?
I'm talking about communication before the memorial service. Memorial service might be different, you have to determine or think through at the memorial service who might want to speak. And, to a certain degree, almost hope that not too many people want to speak because you know, after a while that might not be appropriate. But at the same time, you want to be sure those that deserve the opportunity to make their last statement have that opportunity.
And it seems to me Roger, if you send some of these people and email or a written communication, as opposed to calling, maybe they have a chance to think a little bit before answering
Yeah for your kids. Is it easier for you to shoot off an email to them? So they can kind of noodle it and think, Okay, how do I answer dad?
Yeah, anything that you can do Virginia to simplify the communication so that you are not under stress. I mean, no matter what you do to prepare for this, you're going to be under stress.
it's not going to be gone away. But to the degree that you can think through it, and plan for it beforehand, and then execute the plan. I believe you're going to be able to refer back on it and say, job well done.
I think that's a really good point, Roger. I mean, some of us might say, gee, you know, that's a point of thought might be, I shouldn't be thinking about that stuff right now. Because she's, or he or whomever is still alive, and I shouldn't be thinking about their death. And what you're just saying is, you owe it to yourself, I think and you owe it to them to put in this time beforehand. Is that Is that true?
That's a good summary. Yes.
Okay, let's talk about something probably a difficult topic. And I don't know whether or not you worked on this. But what do you say at a service? How do you think about that process? Is it what what's going on in your head about it?
About the service itself or the process?
No that the actual memorial service sorry
The actual memorial service? You know, I'm a planner. And I have thoughts in my head. But I think at the memorial service, it's time to throw the plan out and speak from the head and speak from the heart.
Yeah I Virginia. How about you did you have someth-, knowing you, did you have something written out? And and were you prepared to read it? Or what did you do for your mother?
I knew that I could not stand up in front of the group that was going to be there and speak like I had any part of a brain left. I knew I was not going to be able to do that. So that's why I did the video. I thank, that I got up I got to the podium. I thanked everybody for being there. I explained how I put the photos together. I explained it just a couple of sentences about mom's journey. And then on went the video at, my brother's spoke. Both of them my husband, of course. And we had all that covered. I just knew I couldn't do it.
Well, that's a good point. I think it's up to the individual Would you say that Roger?
In terms of whether you should or shouldn't? It's up to you?
Yeah, I've seen some people who, you know, struggle emotionally to the point where it's distressful for them as well as the audience. And then there are others who are eloquent.
You both talked a little bit about this, this video, which is a project a serious project. I mean, I've done video shows many of them. And gathering all the photos and picking the music and making sure it sinks and all of that kind of stuff is, I mean, today, there's a lot of things available online to do that. But
actually, some funeral homes do it now
Yes, you hand them the photos, you give them a song that, you know, meant something to the loved one, and they will put it together.
Roger, how did you feel about that? Is that something that you're planning?
It's something that's not done. But in planning? Yes. And Virginia's right, the funeral homes will help you with that. And, you know, fortunately for us, older people, we've got younger people who are really good with all this new modern technology. And there are people who probably can pull this kind of stuff together in moments and wonder why it seems to be any problem for somebody else.
What about pictures at the at the memorial service? A small point, maybe, but how do we all feel about that issue? Having real life favorite pictures of your loved one there?
Well, I think it's really important. I've already selected about six or eight that I know will have meaning to all people who might attend. You know, they include pictures of the grandkids and family photos and, you know, a few group gatherings and stuff like that, you know. And also in Lucy's case, we had a banner that was done for, for a walk that we were participated in. And there's probably 100 signatures on that banner. And I think it'll be important for those people who might attend the services to see that they were a part of this journey.
Boy, what a great story there that's going to be not only meaningful for the people that are there. But the degree Lucy will have any, you know, that would mean something to her too. I mean, you're really doing something there that that crosses both divides.
Okay, let's talk a little bit about the music thing. You both seem to have that figured out. That was the one area I did okay, on. Because I knew my wife had a couple of songs that were really important to her. Roger, what are you thinking about the kind of music? And you said, you want a religious ceremony? So is that a part of your thinking? Or is it something more commercial? What are you thinking?
I'm thinking a little more commercial Yes, we want to have a religious service. But that, to me is just the place that you might have it in and who might be the officiant. But the music is this the music that Lucy and I enjoyed. And music is a big part of Alzheimer's. And, you know, when you find research, music is something that people with Alzheimer's really stick to, and it brings back memories for them. And so there are two or three songs that I know. Even today, when I'm not sure what Lucy really knows at all anymore. Even today, she seems to spark up a little bit when I play this music, so I know that something's got to be there.
Oh, that's great.
How about the actual passing itself? Roger? I mean, this is sometimes easy, and sometimes not depending on where they're located. But how do you feel about or think about who from a family should be there as a loved one passes? What's your thought process on that?
Well, it's one that I haven't had to witness yet. But I think in my case, and it'll be different in everybody else's case, but, you know, certainly our two children, their spouses, and probably grandkids but I'm not sure to be honest with you about the grandkids and then Lucy's brother, and, you know, it depends on timing as well. Steve, you get a chance and you're you know, maybe that you know, the doctors are able to tell you, you know, 48-hours, 72-hours, three weeks, whatever it could be. Depending on that window of time, you might make a different decision. But the end of the day, it's the relatives that are the closest, they're the ones that I feel are appropriate. But others might think, hey, you know, my neighbor was one heck of a friend for 40 years, they should be there.
Well, I think you raise two different kinds of things, you can create a time when, you know people can come and visit that might be close friends. And then there's the those moments to the degree you can figure them out, as you said, it's not easy, where your close family members are there and actually either witnessed it or are just there to, to be a part of it just because it's important to them. And I think that's that was something I went through, I asked my kids, did they want to be there? And I all of them, all three of them did. So we worked it out quite easily. And fortunately, it worked out fine. But like you said, again, it for me it was thinking about it in advance. It's like, okay, you know, and some of them lived in Washington DC. So it wasn't like they were right around the corner. But fortunately, we got to a period where it was pretty clear.
One thing that I'll add to this that comes from my business background, Steve and Virginia and others, and that's I call it P to the sixth power, the letter P to the sixth power. And it stands for prior proper planning prevents poor performance. And that's what this is all about, you know, plan for it, do it right. And then you can be proud and happy when you're done.
I think you can, you can plan the best you can. I knew mom was just breathing on passing. And but she was still she was still there. And I was packing to go spend the night with her in her room and I got a phone call. So it didn't exactly go like I wanted it to go. But it was okay. And I called my brother and my brother and his wife came. And we actually sat in mom's room with her when she was in the bed. And they had closed her eyelids. And we sat there and you know, I'll never forget that time. I'm very glad that we did that. It was peaceful and kind of lovely. And what we were thinking was mom's out of her pain.
Well said Virginia, I think that kind of covers how I felt about it at the time. Roger, let me ask you a couple of last questions. Why is this planning important? I mean, we've covered it. Why is this planning so important for the caregiver?
Well, since I've done our planning, I had had less stress about it, it's just one thing that I know, I don't have to be concerned about at this point in time, when the time comes. I have a clearer head as to what's going to be done and I'm not scrambling to make decisions.
Good. So the second question I wanted to ask you is kind of a sum up question. You've been a caregiver for a while you've dealt with other caregivers with Alzheimer's, and apparently with other people who are going through a passing of a loved one. What would you want to say to anybody who is a caregiver about their own life and what they need to be aware of as a caregiver, that that's something they need to be conscious of, in addition to caring for their loved one.
There's two things that come to mind, Steve, and one you and I have talked about personally and that is as we get older, and especially in this caregiving situation, it's important to listen to one comment that was made to me when I retired and that was, when you're given an opportunity to do something, never say no, because you don't know when you're going to get that opportunity again. And I've tried to remember that going through this caregiving time, so that I'm able to keep my own health, keep my own attitude. And we haven't talked about attitude. But bottom line is it's very, very hard to maintain a positive attitude in this environment. And you need that release from other activities and other people in order to be able to maintain that attitude. So I think Steve, that's probably the way I would sum it up.
Well said I couldn't agree more staying active, staying involved staying, saying yes to people when they invite you over for dinner even though you don't want to go or you know, going out to a ball game or a movie with a friend, or any of these kinds of things are ways for you to keep yourself active. And especially as you get older, you see, you tend to consolidate around your loved one and that this is more a spouse situation than it might be for a young adult caring for their parents. But anyway, thank you for that.
When you start to say no. And you say no, often enough people stop asking.
Well said Well said. Virginia, anything you'd like to add?
Oh, I just want to thank you, Roger. I think in this country, you can generalize and say, we're not terribly good at handling death. And we don't know how to do it. And I think if people listen to you, and really take what you said to heart, they'll be miles ahead of where they would be. Thank you so much for being here today.
Well said Virginia. Roger, thanks so much. Thank you for recommending this topic and encouraging us to do something with it. I think you were spot-on and your words and your advice were terrific. Thanks so much.
Spotlight on Care is produced by the University of California Irvine, Institute for Memory Impairments and Neurological Disorders UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu