Roger Riley, author of the book, Lifelines: A Care Partner's Survival Guide, joins Steve and Virginia for a discussion about letting go of the past and making new memories with your loved one. Roger gives the listeners a few tips for using hobbies and games from your past to engage your loved-one and improve everyone's quality of life. What would like to hear about next? Email us at [email protected]
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.
Hello, Today! Welcome to Spotlight on Care. And we're very excited about today's guest, Roger Riley, he's got some great things to share about how to connect memories with your loved one. But before we get started, I want to introduce my co-host, the lovely Virginia Naeve. And Virginia’s just going to talk a little bit about her experience in this area. And then I'll share my story as well. Go ahead, Virginia.
Thank you, Steve. Well, you know, creating little, small, wonderful memories with my mom was not too difficult. She loved to take little walks. I would walk around the garden, and we would stop at blooming flowers. And it kind of was good for me because it slowed me down. She had such an appreciation for just the little things that make life wonderful. I created a picture book for her with her grandkids pictures and the names printed below the pictures. So that, you know, every time she looked at that book, it was the first time she had seen it. And she loved that. My brother Bob kept a boat down at Dana Point Harbor, and we would take her out for boat rides. And she would hold on for dear life. But she did have a great time. And those were good memories for us. What surprised me was when her dementia started to, you know, progress, large social gatherings, it was almost sensory overload for her. Familiar lunch groups that we would get together with, we'd get there and she'd say, “Well, time to go”. And it was five minutes after getting there. So those kinds of things surprised me a little I thought, well, we'll be with all of her friends and it was making her uncomfortable. So we stayed with the little things, the little niceties of life and just one on one things. So that's my story.
Oh, that's great, Virginia, thanks so much. And in my case, you know, I was very blessed with Patty to have a pretty easy going time with my wife is as the dementia progressed. But one of the things that I'll always remember was towards the tail end of the dementia, when you feel like you're just totally disconnected. And you know, there's really hard, hardly anyone to connect with. We found just an easy little way to do something special, she would squeeze my hand and I would squeeze her hand. And we would remember and laugh a little bit, a little giggle together, as if we were kids again. And so it was really something special that we did together. And I'll always remember that is kind of a special moment in her life and in my life. So with that, let me introduce our guest today. Roger Riley is a good friend of mine and has been involved in dementia caregiving for quite some time not only dealing with his own wife, Marilyn, which he'll share some about, obviously. But also Roger has been running a group through his church for several years, where he actually provides kind of the direction and coordination and assistance to people who whose loved ones are suffering from dementia. In addition to that, Roger has also written a book. The book is called a Caregiver’s Partner, excuse me, a Care Partner’s Survival Guide. And it's really a great book, and I've had a chance to read it. And so Roger’s got a lot of great things to share. So let me introduce Roger.
Thank you, Virginia. I wish that we had those precious moments smelling the flowers. Marilyn's voyage was a rocky one. She fought this disease, she did not want to go ahead and succumb to it at all. We fought the disease for 20 years from her early discovery of it and the medications that we were taking. And through that entire time, she basically was angry about going into dementia. She had experienced it both with her mother and her grandmother and she wasn't going to be one of those victims. So her survival tool was denial. Yeah. And I don't think that's quite uncommon. That's basically how they go ahead and maintain their self-worth is to go ahead, pretend that they can't early go ahead and be. They don't want to be part of that community. Yeah, it's too frightening. It's too frightening.
Roger, how long were you in Maryland married?
We were married at her death. 62 years. Yeah. sweethearts in college. Yeah, interesting enough that I was the second guy that Marilyn was engaged to. Yeah. So I managed to come in there and break up that first engagement. I remember her coming back from a trip and I hadn't talked to her a long time. I got on the phone and said, “Can we go for coffee? And she said, “I can't. I got engaged last night”. She says, “Does that mean you can't have coffee with a friend?”. So that was full court press. Well, obviously, that full court press was successful. It worked. It worked. It was a great marriage.
So one of the things you shared with me and with many others, is this, this idea of the benefits of memories, not only the benefits for your loved one, but also the benefits for you? Could you just describe in general the whole idea of doing things and how the payback actually happens for you as well.
Steve, I've experienced that. It's just those last couple of weeks, in anticipation of doing the interview. Yeah. As I reviewed the kind of good times that we've had reflected upon them. And I've been overwhelmed with a good feelings it has brought to me. One of the things that you have taught me, and I've taught in my learnings, that with the Alzheimer's Association, praise yourself for the good job that you're doing as a caregiver. Don't forget to go ahead and praise yourself for that good job. Because it's so easy to be down in here in the potholes of life.
Yeah, you often use the word magic, when you describe this idea of memories. What does that word magic mean to you?
The word magic. Yeah, that's a ringer. You basically throw a ringer at me Steve?
Well, that's the idea. Right? I gotta get it all out of you. Right.
What is the word magic? Yeah. It's a warm feeling of remembrance of joyful and happy times. It’s the Magic Kingdom.
Well, when you started, you know, dealing with Marilyn's illness. I recall you talking about the fact that you decided to take a class and that you, you both started writing together. So could you talk about that experience is one of the ways.
Absolutely. There was a class on memory writing, giving at our senior center. And I had had a need to go ahead and record her life for the benefit of my children and my grandchildren. It had been spontaneous. That idea had been planted by a broadcast one morning that I was listening to on the radio, fella named Steve Josephson. And he had a little blurb of character counts. And in this blurb, he talked about in the Jewish tradition, that it was appropriate for the patriarch in the family to gather the family around and share his legacy. And his legacy was his value system. It was not his wealth. It was not his pocketbook. But yeah. And I was troubled by that. And I said, Yeah, I need to do that for my wife, while she can still participate in it. So we joined a class together. And the assignment was to write three or four pages per week on an assigned topic. You know, where were you born? Tell me about your relatives. What's your favorite trip? Yep. topics that we put. I tried to get Marilyn to do it. And then I tried to get her to go ahead and dictate what her story would be. Found out that it was too threatening to her. So I ghost wrote her story at same time ghost wrote mine, and I find myself at the topic that the teacher gave us was, that was too narrow for me. So I would write two or three stories a week for her and for me, two to three pages, ended up in a book that I could go ahead and put together along with photographs. Self-published the book, gave it to the grandkids and give it to the kids. And something I was continually able to share with Marilyn as her disease advanced. So these were short, so Sorry moments that we could share.
So the book not only had value in terms of the process of writing it together, but you also use the book again and again with Marilyn as the disease progressed.
How difficult for our audience out there who would think that, Ah!, you know, writing, I don't know how to write a story. We'll talk a little bit how difficult it was for you.
The moment you pick up the pen with a piece of paper in there. Fortunately, a large piece of paper and a felt pad. It's the words just magically come because you're talking about happy times. Good times. You're talking about memories. Interestingly, it wasn't good for Marilyn. Absolutely. Was I was a major beneficiary this whole thing. Because as I did it, I got out of the hollow that I was in as a caregiver being overwhelmed, got to the point that's reflected, and said, Whoa, these happy moments are the real value of this, the grid of our marriage.
Well said. So just starting the project, getting it going. Don't worry about how much you write. Don't worry about and once you get into the flow of it after it's fine.
Just let it happen. Yeah.
Thanks. So that's a good message. I've talked to a few people who've taken the time to write this story. I had an opportunity to write it with about my wife and her experiences. And unfortunately, I didn't write it with her, but I wrote it after the fact. But it was cathartic.
Oh, well that question.
It was very cathartic. So. Okay, there are a couple other things that you in Marilyn did. Can you talk a little bit about your slideshow?
Sure. It was apparent that Marilyn's life was going to be shorter than she had plan and that I had planned. And as I thought ahead and thought, Okay, how do we celebrate this wonderful life, I realized that almost every celebration I had gone to there was the obligatory sideshow. And I didn't really want that slideshow. I didn't want the slideshow to interrupt with the dignity of a service. And I didn't want the slideshow to interrupt the joviality of friends gathering and celebrating this good life. So I sat down, went to all my photos of albums, started taking photos out of the albums, realizing I was destroying them, and how would I get involved back in the same thing. So I picked up my cell phone, I went Click, click, click, click, click, click, click, click, click got a granddaughter over. Yeah. And she showed me how to go ahead and put this the thing on a zip drive. So we ended up with way, way too many photographs. I threw all the mountains scenes away in the waterfalls, little lakes, and saved only faces and put together a 35-minute slideshow. Not to be used at her celebration, to actually use to celebrate the life that she still had. So we would sit while she was in the community. And on my laptop, I would go through the slideshow. And she would go ahead and nod her head and comment and smile. And sometimes just nod off and because we were getting some of the advanced stages. One time we were going through this and nodding and she was nodded off. And I got to have a photograph of Marilyn in her wedding dress coming down the aisle of the church we were married in. And she burst alive like a kid said, “Oh, I love that dress”. That comment was worth every bit of the effort that I put into the slideshow, because she got joy from it and appreciation as well as me doing the slideshow. Another chance to go ahead and just enjoy the magic, if you will, of the remembrance and the joy that we had shared.
So not only did you share the articles again and again with her, read them to her, you also share the slideshow over and over again. I think this is really a good message about some of the challenges we have, you know, as our loved one progresses, how do we stay connected? How do we stay involved? and Roger just given us a couple of great ideas right here that kind of continue to keep working. Another one that you've talked about before was playing games. And particularly your fascination with jigsaw puzzles.
Another fun, fun project that everybody can do, because there's photographs all over each of our houses, I'm sure. And those are special memories. And with that, you can take those photographs and go to your local Photoshop. up and blow it up, crop it out and come up with a scene that your loved one is familiar with, and turn it into a jigsaw puzzle.
Yeah. What's the key to the puzzle?
The key to the puzzle make the pieces big. Don't make it too complicated. It's not a challenge and how good they are at puzzle building. The challenge is re-create memories. You know, if we could practice the empathy, to a degree that we could really get inside that person, knowing where they are at this point. They are somewhere back in their childhood. They can't process the now’s. But they still can process the yesterday's. So with a game playing, yep. Do something simple. Do Candyland. Do crazy eights. Do war games they played as a kid in here. Yeah. As I recall growing up with my children. I said, “I don't want to play candy. And it's such a stupid game.” But essentially, it's something that's part of each child's growing up. Yeah. And it's part it's part of our loved ones.
Yeah. How did you kind of….
Keep it simple.
That's good advice, keeping it simple. How did you kind of organize this all? I mean, you had all these things, and they kind of float out of you. Did you set up some sort of a schedule? Or did you just play it by ear? Or how to how did it all work out?
Many of the things I did I think I did for me. I was in the depth of depression. I was just thinking just the other day. Yeah, I was so overwhelmed with the chores of being a caregiver, that I wasn't processing well. And I was worried, in fact, am I going to be a victim a memory loss. So I actually I went to a neurologist, and we did a complete and total workup on me. And the fact was, I was just playing overwhelmed. So when I would get involved in a project that was basically therapy for me. It made me feel whole and useful and necessary.
Again, the power of this isn't just for Marilyn, it was for you as
Okay, let's go on to talk about the big topic. Music and how you both started with music and how it evolved.
Okay. Marilyn and I fell in love on the USC campus. Basically, we fell in love because the fraternity and sorority parties, and there was also always way too much beer. And frequently There's our old piano and we would sit around and sing all songs, “Shine on Harvest Moon good. Yep. “Me and My Gal.” Fun oldies. With that, there was a couple of guys that played a ukulele. And I said, “I've got to have a ukulele.” I ended up getting an old crummy ukulele. Learned three songs. Yeah, two of which I still remember. And I started playing around and enjoying making noise. I was always a raucous type making noise in joining up. I put that away and didn't really redo it because you know, the chores of being a dad, having kids, education, creating a business and things like that. That music and the ukulele went aside. Occasionally it would resurface in our household. Marilyn would bang on the piano. Yep, kids would run around the house beating on an old pan with a with a wooden spoon. And occasionally I get on the instrument and make some discordance songs because by that time that you pull it was completely out of tune. Well during her voyage and my loneliness, I recognize that I'm really missing music. They had a music or ukulele do…..
Didn’t you call it a…
Yeah, hootenanny over at the senior center. So I joined along in here, and literally taught myself to play. I would take the music books if they had the head words. And they had chord symbols written beside the words. And I would diagram out the chords and go home and play with my fingers and tell my hands for cramped and learn the cards and learn to play. I like took that not only bring joy to my life, but joy with Marilyn because we could go out you will sail home. We would sit around we would sing the old songs together and took that into the community once she basically progressed in the disease and was in a care community. So I got gathered up a booklet of about 20 songs. I asked, if I could come in and be the entertaining staff. So I took this into the community, encourage them to go ahead and sing along, gave them the music. I played the ukulele making a fool of myself. And we got good participation, not 100% participation.
One of my favorite memories is a lady who was basically lying flat out on her back in the room in here, paying absolutely no attention in here. just didn't know that she was comatose or she had fainted. She was just dead still. Until we got to a song and I forget the song. Maybe it was “You're my Sunshine.” And all of a sudden she perked up, got up alert, a grin on her face. And we've touched a memory within her that brought back fun times. And youthful times. It was it was spectacular. So I still continue to do that. I do hootenanny to go ahead and entertain myself. Oasis still has a group going. And we're going after COVID into the park tomorrow.
That's right. That's great. So for those of us who maybe aren't so handy with a ukulele or a piano, how would you recommend that you make music apart of not only your life, but your your loved one’s life as well.
Maybe you're going to need to help your grandkids and they can go ahead and pick up on your phone an album of music that's appropriate for the loved one. And just with your cell phone, go in there hum along, whistle, clap your hands do whatever you can get them involved in that music.
Did you find that Marilyn was singing along with you when you did this?
What was your favorite song?
The one that I would sing to her every time, “Can I tell you how much I love you.” And I would I dedicate this song to her. Funny thing happened one day, as I was out in the parking lot after we get our hour of music with people. There was a mother and a daughter. And they kind of looked at me and they signaled me to come over and you may not have heard this but something really funny happened in the back of the room. She said when you finish playing this song, one of the residents turned to the other and said, “Do you think he's putting moves on Marilyn?”
So another good example this whole experience with music especially and helping you know, caregive for Marilyn was also something she got out of it and you got out of it.
There's something here that you may not have been aware of. As I was dealing with my funk and trying to go ahead and feel empowered to go place Marilyn, within a memory care facility, I needed support. So I basically went to a psychologist and asked him, “Was I doing the right thing?” I needed somebody to tell me that I was doing a good job. And it was the appropriate thing. And one of the bits of advice that he gave me, he says, “Have you written your love letter?” And I immediately got folded arms and I said, “I can't say goodbye! Yeah. No, he said, “have you written your goodbye letter not love letter?” So I folded my arms. And I said, “Yeah, I can't do that. I'm not ready to do that yet.” And he said, “I don't mean goodbye to the person. I mean, goodbye to the past.” And so I sat down again, and just started writing. And I said, “What are we going to say?” And the words of the song, “Can I tell you lately how I love you came to me.” So I use that as a topic matter as I went through and wrote this goodbye letter to the past. Very, useful.
What did what did it do for you so useful?
It gave me the freedom of knowing that I had to let go with the past. The past would never return. Part of growing through this disease is recognizing that the good days or the good times are not going to roll again.
That's a hard decision to come to conclusion.
Absolutely So when you reflect on your key learnings as a caregiver, which was for quite a few years.
it was 20. It was 20.
What would what would you pass on to other caregivers who might be listening to this podcast.
None of us can go ahead and do this job alone. We must look outside of ourselves. If you're lucky enough to go ahead and have a support system around, take advantage of that support system. If you don't have one, find one. You can't do it alone. Yeah, you can try to do it alone. Big boys don't cry in here. But unfortunately, they also stumble and they fall into mudholes. So build that support system, learn about the disease. So you understand the disease and your….
How did you open yourself up to let other people in, Roger?
Part of that was basically learning how to accept a very difficult child and who were difficult, difficult life. He was schizophrenic, and all of his life because he thought I was the, “can do”, “I can fix it guy.”
So wait a minute. This is a child that you had that was a schizophrenia?
Yes, my son.
Yeah. my son. So we went through all the throes of schizophrenia. And all this time, I was trying to fix him. We were trying to fix his diet, we are trying to take the red dye out of his food we were trying to put him in special schooling. I even got to a point one time when I was so desperate, that I had somebody attempt an exorcism on him. Yeah. How in the world ever allow that to happen, I have no idea. But I was desperate to fix him. During that process, I learned I couldn't fix him. So I had to go ahead and turn to the accepting and loving hands of God just to basically partner with him to go ahead and share my burden. That was so useful. As I grew through there, that I finally got to the point with Marilyn, as I was trying to fix her, was trying to fix her with vacations. I was trying to fix her with music. I was trying to fix her with medication. And I had to quit and just accept the fact that I couldn't. And I had to share my burden with my family, my friends, and be vulnerable myself.
A lot of valuable lessons. You can't do it alone.
Exactly. I think that's an issue for other men as well. Having a life of feeling like you're always in control. And then all of a sudden, you can't control this. Well. So if there's a message out there….
Depression-aged kids in here are taught to buck up. “Big boys don't cry, just get out there and get the shovel in the soil.”
Well, that's great. Any other final thoughts you might have?
Part of the things that have released me is, I will get to a point and life that I'm feeling totally and completely out of control, and overwhelmed. And I still, in spite of all I know, and I talk and here, I allow it to happen. So when I'm under control, I have a red spiral notebook. And I have a big felt pen. And I opened it up notebook. And right at the top, it says, “Dear God, This life sucks. The following is a list of things I'd like to bitch about. And I let it flow. I just let it flow. It's absolutely magic. Once you go ahead and get that stuff off your shoulders in the you're overwhelmed with the goodness that’s in your life. And from that comes affirmation. “Okay, what are you going to do about it, buddy? What kind of changes are necessary? So yeah, get out your red book. Let it flow.
That's great advice, whether you're a Christian or not, I am. But I think the idea of letting out all the sadness that you have in your life, your frustrations, your anger to a person or in writing or both is a great way to cope, to really be able to make it through this. Well, Roger, I want to thank you so much for your time, and your effort and your insight and your wisdom. You truly are a great caregiver and it's been a joy to have you here on our podcast.
Thank you, Steve.
Virginia. anything you'd like to add?
Roger, I loved everything that you said. It had brought back a lot of memories. There's a lot of similarities, taking care of a spouse and taking care of a mom or a dad and you know the music thing that was important to my mom. My brother rigged up an iPod in her room with Frank Sinatra and goodness knows everything from the big band era and all that and that just perked her up. She enjoyed that very much. She could actually… In a time when she couldn't remember I was her daughter, she could remember the words to hymns, and on Sunday mornings would sing them. The puzzle thing I wish I'd known you, because my mother loved puzzles. And I just thought it would be frustrating for her. So I never got her one. I should have. Thank you very much. You did a great job today.
Well, again, Roger and Virginia, thanks so much. This is Spotlight on Care. Please tune in to other podcasts that we're doing. We're going to be posting a number of new podcasts over the next few weeks. So please join us and if you have any feedback, please send us a note through UCI MIND and we're excited to have you a part of our family. 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.