Alzheimer’s and the Family: Concerns, Communication, and Compassion with Keith Swayne

In this episode, co-hosts Steve and Virginia have a conversation with Keith Swayne about the importance of communicating with family throughout the Alzheimer's journey.     Keith elaborates on his own process for sharing with his children and extended family about his wife, Judy's journey from diagnosis to her passing  in 2014.  What would like to hear about next? Email us at mwitbrac@uci.edu.

Transcript

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Steve O'Leary  0:06  
From the University of California, Irvine, this is UCI MINDs, 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. 

Well, welcome today to Spotlight on Care. We're really excited to have our guest Keith Swayne with us and he'll be talking about, well, what it's like to deal with your children and how you make it work as your loved one is developing dementia. So I thought I'd just tell a little story about my own experience with this and, and then I'll introduce Keith, I had kids all over the country, I had one in Cincinnati, I had one in DC, and I had one here in Southern California. And so they weren't able to visit very often. And they weren't involved very well, in the beginning, very nervous and scared about what was happening to their mother. I think the thing that we did best was a lot of communication. Anytime I visited or every couple of weeks, at least, I would send out a note about what was happening with their mother, if we conducted any, you know, major research that had happened, or if she'd gotten any blood tests back or anything like that, I would pass that information on. So I think that that kept them in the loop. And then I made the effort to have one on one conversations with them. One of the things I'm sure Keith will talk about is the challenge of everybody's on their own path with it with this disease. So without further ado, let me introduce First of all, my co-host, Virginia and she's here today, but let me introduce Keith.  Keith and I have been friends. Were both Oregon Ducks. I mean, this is important, right? And, but my Keith's background is extensive as a philanthropist. He's he is actually one of the founding members of a men's caregiver Group here in Orange County that he and I founded. He serves on the Leadership Council for UCI MIND. He's the former chairman of the Orange County Community Foundation. And a couple of years ago, he was actually philanthropist of the Year in Orange County. So Keith has got giving soul I think is the right way to say it. Keith, welcome.

Keith Swayne  2:41  
Thank you, Steve. Thank you for that introduction. I would just add that when I first met Steve, we had a long conversation, and it was only at the end of the conversation, we found that we were both Ducks, and that we would both played volleyball. So we had commonality in addition to our wives that we're dealing with dementia.

Steve O'Leary  2:59  
Keith, why don't you go ahead and give us a little background on your relationship with Judy and how it all started? 

Keith Swayne  3:05  
Sure. I'd be happy to. Judy and I met in Berkeley in 1963. I was going to graduate school to get my MBA, and Judy was teaching school on Marin and living in Berkeley. We met on a blind date. I asked her to marry me two weeks after I met her and five weeks later, she said yes. We were married at the end of my school year and I took a job in San Jose in marketing in the food industry. And Judy started teaching in the Saratoga School District. 18 months into our marriage, the Vietnam War had kicked up. I was about to get drafted. And I decided that I would volunteer for the Navy and I applied for naval OCS and went into the service and got commissioned as an officer and serve four years. Most of it at sea, a couple of deployments to Vietnam and Judy continued to work as a teacher in the San Diego area. After the service, I joined a family business in Orange County, we moved to Laguna Beach where I continue to live. And our son was born in 1970, or daughter in 1975. And then Judy went back to work and had a where my career was in one industry, one company, her career was all over the ballpark. But she was she was a she was a very focused, driven person.  She worked initially as an executive aide to the county supervisor for the fifth district Tom Riley. And then when Tom Reilly left office, she did consulting work for financing of low income housing and then From there she went to work for the California Community Foundation which led to her coming to Orange County to start the Orange County Community Foundation. We both retired in 2000. Judy was 59 and I was 60. I had sold my company and Judy handed off the reins in the community foundation to Shelly Haas who runs the foundation now, Judy was a strong willed, bright, tenacious 100% Swedish stock, tall blonde strawberry blonde with a lot of Moxie. I have gave her a little. And they call it same for your button that she wore that said, I'm not stubborn. I'm just Swedish. And she was. We had two children. As I mentioned, son Kirk, who lives in Orange County and our daughter, Anne, who lives in Honolulu. And as a single mom, with our wonderful granddaughter Linnea. After Judy's retirement, I began to notice things that I thought initially were just idiosyncrasies. And she was getting a bit erratic and frustrated. In hindsight, I realized that those were the early manifestations of Alzheimer's. And she was diagnosed with MCI in 2005. And then with Alzheimer's two years later, I cared for at home until 2012. And then she went into residential care. And she died November 29 2014, at the age of 73, a few months into our 50th year of marriage.

Steve O'Leary  6:38  
Well, it sounds like she was an incredible person. Keith, I've heard you talk about her before. But thank you for sharing that with our listeners. So what were the ages of your children when you inform them of Judy's dementia? And what were some of their initial reactions to the information?

Keith Swayne  6:56  
When Judy was diagnosed with MCI our son was 35. And our daughter was 30. I don't think that they were shocked by the diagnosis, because we had all seen Judy changing her personality changing, but we were all saddened. And I think I was certainly saddened by the knowledge, that there really was no cure for Alzheimer's. So we were on a one way street here with no exit. And I felt that I think they felt that even more, because they hadn't had 50, 45 years, with her with their mother. And they were seeing losing somebody that they had seen all through her life, for being so strong and resilient and be able to handle anything. My son was actually in a bit of a state of denial. And I think he had the hardest time because for him, it was really hard to see his mom who he'd looked up to and who had been his supporter all those years.  My daughter was saddened and distraught. And part of her challenge was, she was living in Honolulu, and could only come home to see her mom, maybe three or four times a year at the most. So each time she would come home, she would see a dramatic difference in where her mom was.

Steve O'Leary  8:24  
So how did you communicate with your, with your children? And how did you handle questions that might have come up from them.

Keith Swayne  8:35  
I told both of the kids at the outset and our family, our closest relatives, that I was going to get the best care I could for Judy. And that I was going to be totally transparent about her condition and about the care, and that I was going to keep her informed. And that's what I did with Kirk and Anne. And I did it even more so with them than I did the extended family. And I think what that accomplished especially with Kirk and Anne was they trusted me right from the beginning because I wasn't keeping anything from them. And having that trust was really important as we went through Judy's journey with Alzheimer's. You asked how did we deal with problems or questions?

Steve O'Leary  9:22  
Yeah. How did you handle questions that they may have posed to you?

Keith Swayne  9:26  
Well, generally, I think it was accomplished through my preempting their questions by being open. I don't think we ever had any real disputes about care. I would say they were probably satisfied with the communication they got. Again, the difficulty was trying to reassure my daughter who could only come to her three times a year that she was doing the best she could to be there with her mom. She had a hard time because she was just getting about to get married when Judy was diagnosed, and Judy could not really participate in that process as much as she would have hoped to. And then after she got married, and she had a child, her mom wasn't there for the birth. Or she was there in the hospital after the birth, but she wasn't there to be with her in the way that a mom would normally want to be with her with her daughter. And then a number of years later, Anne’s marriage ran into difficulty, and she had a divorce. And she's now a single mom. And she did that without having her mom being there to support her. 

Steve O'Leary  10:34  
How is it for you? I mean, we all know what the challenges are that we experience with this disease as a caregiver. How was it telling your kids about some of the challenges that you faced?

Keith Swayne  10:49  
Well, I'm not sure I was as open with him about the challenges I faced, as maybe I should have been. And I'm not sure I was as honest with myself about the challenges. Because while I was dealing with Judy, on her journey, I was also serving as father and mother for both Kirk and Anne and on their challenges. So I was a bit of a lightning rod for any problems that they had. I worked, as I said, to keep them informed, and I worked to be there with them when they had challenges. What I discovered was that it had more of an impact on me than I realized. And Steve, what I did to try to head some of that off was, as we've talked about before, was to get involved in things other than just caring for my wife, or dealing with my wife's challenge or my children's challenges. So this included getting more involved in philanthropy. I served on a number of company boards. And at a personal level, I made sure that I continued to exercise. And I even went to a therapist, which I had never done previously, which I would advocate. When you need someone to talk to you, there's not going to be judgmental. And I found there were times when I needed that. And that was very helpful to me.

Steve O'Leary  12:12  
What happened when the kids said, “How are you doing, dad?” What did you say? Oh, Steve, I tell them I'm doing great. what you're supposed to do, 

Steve O’Leary 12:24

I guess so was there ever a moment when they realized that you weren't doing so good. And they pushed you and probed you?

Keith Swayne  12:31  
I think they could see it in me. When they would visit and see me in person, or they could hear it in my voice. My daughter, to her credit would check in with me to see how I was doing and would remind me to take care of myself. And by the same token, I was doing the same thing with her.

Steve O'Leary  12:54  
So your message about taking care of yourself is critical. Right?

Keith Swayne  12:57  
I think it's absolutely critical. I think that I realized that even more later on in the journey. Because anyone that's gone through something like this, you don't realize what it's doing to you because it's happening gradually. And if you went from the day you learned of the disease until the last day of the journey, you could not have imagined that you had had to deal with such difficulty. So along the way, you really need to be caring for yourself so that you'll be able to care for your loved one.

Steve O'Leary  13:37  
I had some friends say to me, which I overreacted to that I had changed, you know, and I thought oh my goodness, you know, I'm 60 years old, I don't want to be changing, you know, where they were complimenting me about being more patient and developing a whole new set of skills. How was it for you?

Keith Swayne  13:58  
I think that's right on point. The change I felt in myself, I've always felt I'm a fairly compassionate sympathetic person. But I believe I became much more compassionate as a result of not just dealing with Judy's journey, but I met a lot of other people that were dealing with the same kind of journey or when she was in residential care, getting to know the people that were there. So I think I benefited from that. And I also gained patience. Although I would say most people don't think of me as being very patient now, but they should have seen me previously.

Steve O'Leary  14:38  
Okay, let's go back to the kids for a second. So were there any disagreements? Were there any times when they said, “Gee, Dad, I don't think that that's what we should do?” 

Keith Swayne  14:50 
No, I don't. There weren't any real big disagreements. I'm trying to think.  Probably at the outset, when Judy was first showing signs of some impairment, I think my daughter was actually pushing me more to do something than I had yet done. Because she could see it. Like I said before, she didn't see her often, but then she wouldn't see or she'd see the dramatic change. And it was around Christmas. And maybe to some extent, I was still in denial. Or I didn't want to acknowledge it, because I didn't want Judy to have to confront it. I mean, it's a strange thing. I, I know, she I knew she would be embarrassed by it. And I was probably still in the stage of denial to some extent. And my daughter was pointing out to me, things that she had seen, which was reinforcing what I already knew. And that encouraged me to do something. But as far as any real differences of opinion about how Judy's treatment should be conducted? No, we didn't have that. But I'll go back to what I said at the outset, I think we didn't have that because I was completely transparent with him about what we were doing. 

Steve O'Leary  16:08  
So that's key, holding things back from your kids, thinking you're going to hurt them, or even when they're experiencing their own problems, the idea of keeping things away from them is only going to cause more problems down the road.

Keith Swayne  16:21  
I think that's right. But I think it's also important that if you're dealing with adult children that are having their own challenges, they have to feel like the challenge you're facing with your spouse is not getting in the way of your ability to be a parent for their challenges. Otherwise, then I think they begin to resent what's going on as opposed to being supportive of the effort that you're making.

Steve O'Leary  16:50  
So you would recommend that you're pretty clear about the fact that you're there for them as well. They shouldn't see this as a, as a Stay away from me, because I've got too much to do. 

Keith Swayne  17:02  
No, I  think that's absolutely correct. I think I tried to do that. I might just comment on how you make decisions to about care for your spouse, with families. I had kind of more or less established at the outset that I intended to make the decision about Judy's care, but I was going to be as I've said transparent about it. I've certainly witnessed families where they've had group decisions on what the care would be. And in some instances, that works just fine. But in some instances, the more family involved, the more likelihood there's going to be divisiveness. And both you and I have witnessed some of those instances, which then makes care of your loved one even more difficult. So I realized that for every family, it's a unique journey, and they have to pick the best path. But in my experience, I think having me as the spouse, be the one making decision about care, and then communicating it openly was the better path.

Steve O'Leary  18:11  
Well, let's talk about the toughest decision we've ever made in our lives. placing our loved one in a community. How was that for your children?

Keith Swayne  18:21  
The night before Judy went into residential care, the realization that I'd never be by her side again, was the hardest day in my life. It was more difficult than the day she passed away. I think for my children, the day she went into residential care had a different impact. They probably I know they saw it as it was going to make it a little bit better for me, which they wanted to see happen. And they were satisfied that she would get good care. So my mourning, started the day she went into residential care. Their mourning didn't really start until the day she passed away. And as you and I've talked about Steve, one of the lessons I learned was that each of us mourn on a different track. I had been mourning for two years. They hadn't started that process yet. And I wasn't as sensitive to that as I should have been.

Steve O'Leary  19:33  
So you were saying that there was a time when your kids grieving and their mourning was on a totally different schedule than yours. And it was a struggle for you. How is it a struggle for you?

Keith Swayne  19:50  
I think for me, I lost Judy the day she went into residential care, I stopped being a spouse, I had been a spouse caregiver. And when she went into residential care, I became a caregiver. And I was still a spouse, but it was a small ‘s’ on the spouse. Because I was visiting, but I was primary focus was making sure her care was there for.  For the kids, she was still their mom throughout all this time, and she wasn't gone until she passed away. So I didn't struggle with where they were, I just wasn't sensitive enough to it. I mean, I've, throughout my life, when I've met an obstacle, or some hardship, I suck it up. And I just go on with life. And I've tried to be more understanding that not everybody thinks that way. But I think that I was remiss with my children and not realizing that they weren't on the same page I was on. So I would say the struggle is more afterwards, when I realized I could have done a better job in bringing them along in that process than I did.

Steve O'Leary  21:03 
Was it any different between the two children?

Keith Swayne  21:06  
I think they both had their own unique challenge.  With our son, it was his difficulty accepting that his mom had the illness and that it was headed in such a dire direction. And with my daughter, it was the fact that she couldn't be there with her.

Steve O'Leary  21:28  
Well, let's talk about visits. Did your kids visit your wife, Judy, at the community?

Keith Swayne  21:37  
Yeah, I'll step back just before the community. So when Judy was at home, and I was caring for my son was kind of absent from that process. But once she went into residential care, he became much better at going to visit her and being with her and he would spend extended periods of time with her. So I was really pleased with that. But when he initially when he wouldn't come and help me out, I went through a period of time and being a little bit upset with him for not providing the support. But I think it goes back to his difficulty in accepting her condition. So he visited more.  My daughter would visit whenever she came over.  We had other family members come and we had friends. And all I asked was that they check with me to coordinate the visits.

Steve O'Leary  22:31  
Yeah, um, you know, my story is a slightly different one. But I wondered whether or not for me, my daughter had a much, much harder time than my sons. And I had to realize that, you know, that, that there's different paths for them, as you said, as a group, and individually, they're going to find their own path. And my job is to support them, as the process goes along. So as Judy's condition worsened, in the community, how was it for the kids?

Keith Swayne  23:08  
They had to accept the reality that it wasn't going to get better, it was only going to get worse. And I think they did accept that. I would say their reaction was one of sadness. When Judy went from being someone that was smiling and welcoming, and could dance with our granddaughter, or dance with me and sing along on songs to this empty shell sitting in a wheelchair, not able to communicate. It had to be terrible for them. I mean, their mom was such a big presence in their life. And there she was, essentially gone.

Steve O'Leary  23:55 
Did you find yourself interacting more with them as the as her condition worsened? In terms of feeling them out about how they were doing? Or was it pretty much the same?

Keith Swayne  24:07  
Oh, I'd like to say I was more aware of it and more in tune with that, but I'm not sure that I was.

Steve O'Leary  24:15  
Fair enough, right. We all learn from the process. There's no question about that. So when Judy passed away, as you have already said, their mourning began, then what was that like for you in terms of trying to help them at her passing?

Keith Swayne  24:32  
Well, let me just kind of describe that the day itself. Judy died Saturday night of Thanksgiving weekend. And Kirk and I had been in Santa Barbara with family and Anne was in Honolulu. The care facility I tried to call my cell phone, but apparently my cell phone was somewhere else in the house on a charger. And then they didn't call my landline. So they called my son as a backup. So he was the first in the family to hear that she had died. He called me. I went and picked him up. And we went to the care facility and spent time with Judy together. And then individually. I think in hindsight, it was really good closure for my son or closures to say, they didn't close anything. But it was a good moment for him. He saw Judy serene. And he realized also that it was the end of a really bad journey. For Anne,  when we left there, I called her on the phone. It was a totally different experience. She wasn't with her mom. She didn't see her mom. And she wouldn't be there until we didn't have the service until mid December because we had some Swedish relatives coming in. So we delayed the service till then. So I think that was much harder on Anne.  The next morning, Kirk and I went back to the care facility and packed up Judy's watercolors. She was a water colorist. And things that we had in the room to make Judy feel like she was at home, packed him up and brought him home. And it was a bittersweet day. It was the end of this journey. But it was certainly a sad day.

Steve O'Leary  26:40  
So you look back on your family's journey through this, is there anything that sticks out to you? That not necessarily about your kids, but just about the key learning that you might have experienced? It certainly changed me.  I don't know if it changed you? 

Keith Swayne  26:56  
Oh, I'm sure it changed me. I mean, it's a profound life experience. Judy and I were wonderful partners, I was blessed to have this relationship with this wonderful woman after for 50 years, not bad for someone you meet on a blind date. So her loss was profound. I think that you know, what I learned from it was compassion and love more than what I had before. And I've always been pretty loving, compassionate person, and the importance of family. And the importance of living your life now, and not waiting for something in the future. Because we don't have control over that, nor looking back and reassessing things in the past of your life. I think there are things that I learned about the process of being a caregiver and dealing with my kids, that might be a value, to share. Certainly, talking to other people who have gone through this journey, or are going through the journey is really important. Initially, I didn't have those conversations. But in the support group that we helped form, I see the value of that when we have men coming in there who are in the early stages of dealing with their spouses, Alzheimer's.  And engage a therapist. Because there are times you're going to want to talk about things with somebody that's not going to be in any way judgmental, and can listen to you and help you work your way through challenges. And take care of your own physical and emotional well-being. Certainly, my wife didn't expect me to be a martyr in this, nor would I have expected her to be a martyr if it were turned the other way around. We need to take care of ourselves because we can be better caregivers. And we need to take care of ourselves because we have a life to live ourselves. And then I think the idea of being very open which I've talked about and being transparent.  Tapping into resources that are available. UCI MIND was a great resource for us to he was enrolled in their longitudinal study, the Alzheimer's Association.  Adapt with each stage of the journey. So in the early stages while your loved one is still conversant and can enjoy things, make sure that you get as much pleasure and joy out of those moments as you can. And when you get towards the end of the journey, and they're no longer conversant when they're sitting in a wheelchair, just know that presence, your presence being there, and your touch is soothing to them. And, soothing to you as well. And I guess the last thing, I would say, don't sacrifice your own well-being. You have a life to live, and life is going to go on after the passing of your spouse. And that's an important focus to have as well.

Steve O'Leary  30:47  
Yeah, I think you said it quite well. If you're going to be a really good caregiver, you have to worry about yourself and take care of yourself and make sure you're active and make sure you're doing these things. Well, it's a great story. Of course I've heard pieces of it before, but never quite so eloquently said. Thank you, Keith very much.

Virginia  31:09 
Beautifully said.  I have to say one of the things that drives me so crazy is when people describe Alzheimer’s as a disease of memory loss. And all they have to do is listened. Listen to you. And your stories, Keith, because you described beautifully the process. It's a process. And memory loss is a part of it. Yes. But there are so many other things involved with getting through the journey of this disease. And it this is a good podcast to teach people that.

Keith Swayne  31:46  
Thank you. I think the other thing too, when, when Judy was first diagnosed, there was still a lot of stigma around Alzheimer's. There still is stigma. And we have I mean, that's one of the lessons I learned was destigmatize it, it is a disease just like any other disease, and it's not something to be ashamed of. And we need to be open about it and frank when we talk about it. So anyway, I appreciate this opportunity.  Thank you


Steve O'Leary  32:12  
You're welcome. And thank you. Well, this concludes our Spotlight on Care podcast. Please check our website at UCI MIND to find out about future podcasts that will be coming along. And thanks so much for your participation and we hope that you're enjoying these messages. 

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