In this episode, the co-hosts sit down with Cleo Dougherty to discuss the importance of finding the right support group for patients and their caregivers. Cleo shares her story caring for her husband, Tom who was diagnosed with Alzheimer's disease in 2006 and recalling her experience as both a member and a leader of a support group. For more information about support groups at the Alzheimer’s Association, visit: https://www.alz.org/ or the Savvy Caregiver Program through Alzheimer’s Orange County, visit: https://www.alzoc.org/events/savvy-caregiver/. What would like to hear about next? Email us at firstname.lastname@example.org.
Steve O'Leary 0:06
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. We're really excited to have our guest today, Cleo Dougherty. Her topic today is going to be about the value of support groups and what they can mean for you as you go through this challenge. Whether it's as an adult taking care of your parent or whether or not it's you taking care of your spouse. So before we go to Cleo, I'm going to throw it over to my co-host Virginia Naeve to share a little insight about support groups from her perspective.
Well, I have to tell you, I really wish that I had searched out good care group, support group, but I didn't because of my first experience, I decided to get brave and just drop in on a support group at my mother's community. And I sat down and got around to me, and I introduced myself and said a little bit about mom. And then I said, I really would like to learn about what the end stages like. And there was complete silence. And I looked at the leader of the group, and she looked at me and she goes, “You don't want to know!” So I left that support group and never searched out another one. I should have.
Steve O'Leary 1:54
That gives us a little picture on support groups. Now, let me turn in introduce our guest, Cleo Dougherty. Cleo’s got kind of an interesting background, and she'll tell you about her relationship with her husband, Tom. But I think it's important to understand that this woman is a an entrepreneur. She's a business owner. He she started a business when, you know, she had a young child and has made a success of her life. You could say she's famous, or you could say she's infamous in the toy industry. It's a small club, I happen to know a few people in it. In addition to that, Cleo’s also been very active in the Alzheimer's Association. And she serves also on the UCI leadership team. So Cleo, please give us a little bit of your story with Tom.
I met Tom just after I turned 40. And he was 48 had two grown children in the Bay Area. And I had a four year old daughter, Meg. So we created this little family of three. And we were just very happy together. It was a great time for us. Tom had a long career in the bearing industry, ball bearings and sales and management. And I had started my own repping firm years before in the toy business and covered the western states. So travel was a big part of our life all over the western states. And luckily, Meg was a good sport about that. In 2006, Tom was still jogging, picture of health, and appeared to be just moving right along in his life. And while he was at a convention with his company in San Francisco, he had a massive TIA.
What's a TIA?
A transient ischemic attack. It causes white blank spaces in the brain, dead neurons. As I understand it. This was such a surprise to us. We were just blindsided. And he was diagnosed Two months later with Alzheimer's disease. We didn't know it was throughout his family. And he was genetically marked for it too. So life changed drastically the situation in San Francisco was traumatic. He was found by the police wandering, not knowing who he was or where he was, and taken to a hospital. So it's just a huge, traumatic event.
Steve O'Leary 4:49
Sounds like it.
It was -- and shocking, and I knew almost nothing about Alzheimer's. I always been under the delusion that I can handle most anything. But that was big. I went to the Alzheimer's Association to ask questions. And they were wonderful there. And that led to Tom and I joining an early memory loss group. Where we were. All of our questions were answered, or most everything was answered. And we learned what we were dealing with and how to move forward. Some of the couples in that group were, were still working and had children at home. So that was a plus for us. We could relate to their lives. And as a group, we learn together. And we made friends there as well. Formed friendships.
Steve O'Leary 5:47
That's kind of important, isn't it? Kind of making a connection that there are other people out there beside you? And your husband?
Absolutely. Because in the beginning, we've, we didn't know anyone that was in that situation. And we felt like we were totally alone with this big diagnosis. So it was hard.
Steve O'Leary 6:04
Okay, well, let's talk a little bit about support groups, since you run one, or did before COVID.
I did before COVID. Yes.
Steve O’Leary 6:16
But let's start at the beginning. What Why did you seek up support groups? What did you see the value of support groups?
I needed an education, I really didn't know anything about Alzheimer's. And honestly, I would have bet money that I would never be a caregiver for someone. I’m just not equipped. So we need an information. And they provided that and more a great deal of support.
Steve O'Leary 6:45
Did you did you form a group up with the with the people that you went through the early training?
Actually we did. We, we did become friends. And a couple of us decided to have a little spin off and do meet socially as well, and formed a group where we'd have monthly potlucks at each other's homes. And it provided a really safe, fun atmosphere where our partners didn't have to worry about missing a word, or not understanding everything. It was just a very comfortable, fun atmosphere for our partners and for ourselves, too.
Steve O'Leary 7:26
Yeah, that seems quite unique. I never heard about that before, when you were telling me about it. How many people were in the group? And how long did you meet?
We did it about once a month for most several months, but it was difficult to get everyone together. And not everyone is willing to host so it fizzled out in the end. But while it was going we had maybe 25 people at each group 20 to 25 people at each gathering. And it was it was varied and it was good. It was good time.
Steve O'Leary 8:01
Did you ever attend any other support groups as Tom's disease started to develop?
I did. And I went to a over 55 community where they had a support group for Alzheimer's. And I was reaching out for more information and more comfort and support too and it wasn't a great situation for me. I didn't feel I fit in. I didn't feel that the situation with Tom and I was the same as all the people that were there. And I didn't feel that it was an educational thing at all. So I reached out a couple of times to groups like that. But for me the best was going to the Alzheimer's Association and following up with other care groups that they their support groups they offer.
Steve O'Leary 8:56
Well, let's talk about that. Let's talk about the Alzheimer's support group that you were in
after they early memory loss group with where Tom and I both attended. And even in that you would have an intro part where you just catch up on things and everybody gets comfortable. And then you split off so the caregivers go with a psychologist into one room and the people with the disease stay with the psychologist for an activity, and, and education there, too. That was critical, because we could actually in that separate room, we could really talk freely and, and compare notes and learn and gain support from each other, as well as they psychologists there. There was another group that I went to the Savvy Caregivers classes. And that was strictly for caregivers. I referred to it as boot camp for caregivers, because it got to the down and dirty and this is what you're going to have to do. So here's how we can, you know, toughen you up and teach you how to do it. It was a tremendous class, it was the most meaningful of any classes that I took, or any groups that I attended.
Steve O'Leary 10:15
What were some of the things that the Savvy Caregiver group talked about?
we actually talked about end stage, and when you're actually getting into the physical caregiving, and protecting your loved one from harm, because in the early stages, you're just there to kind of steer them and try to keep them comfortable and do everything you can to maintain their dignity, and their sense of independence. But by the time you're needing the Savvy Caregivers class, you need to be a caregiver, you need to be physically taking care, and helping them with, with all manner of things, and accepting and stepping up. Filling the shoes.
Steve O'Leary 11:01
So how freely did you feel about talking about your situation with Tom, at your Savvy Caregiver group?
Oh, completely comfortable? Because this was it was very private. It didn't go any farther. And we respected each other's privacy. Absolutely!
Steve O'Leary 11:22
Was that an understanding that the group had?
Steve O’Leary 11:26
Was that something that you covered and written or agreed to, or just to just kind of like accepted?
I don't recall having to sign anything. But it was just it was just an understood that this doesn't go farther. And you can speak freely and ask any question you want. And express yourself, it was just a very deep, good education.
Steve O'Leary 11:49
When you think about some of the other members who were in the group, especially somebody who would join the group, you know, new to the group, so to speak, how did you help them open up?
In Savvy Caregivers it was it was a six week program. So it was you needed to be there for the six weeks? So we didn't have that situation.
Steve O'Leary 12:11
So same people all six weeks,
Different situation than being a group that people come in and out of
Exactly. Much easier.
Well, let's go back to savvy caregivers that was it important to you to create a relationship with the people that was in the group? Or was it just an exchange? Did you feel any closer to any of them as a result of the group?
I think you couldn't help but feel closer to them. Because we were all divulging very personal things, very troubling things. And we were processing our own loss.
Steve O'Leary 12:52
I'm going to ask you a tough question. What was the most difficult thing you ever talked about in the support group?
Needing to take Tom to residential care?
Yeah, definitely. That's how I started a group with a good friend Keith. I couldn't find a way to overcome the grief and guilt, I was starting to feel about the whole idea of forming a group and or, or just asking for help from people. And out of that happened to group. So I Yeah, I know, what's the toughest time thank you for sharing that. Sounds kind of somber, your groups. Was there any kind of frivolity or humor, or anything that occurred as a result of these groups?
Oh, certainly. You really have to laugh at some of the absurdity of it all. And we are there was actually I'll admit, there was one spin off group, there were three of us, three women, caring for husbands, and we would meet monthly over coffee or lunch or whatever. And it would normally sit down with this, or it would start with us sitting down and going you won't believe what he did or what happened or Oh my god. So it was just Yes, we could unload and share ridiculous stories that may not be funny to anyone else, but at the time we needed to laugh.
Steve O'Leary 14:17
I think that's a good story. So after Savvy Caregivers, where did you go from there? What was your next group experience?
I went to a small group when Tom started in a day program, because I simply couldn't take care of him at home anymore. And I needed more help. And I found a wonderful day program, Mount of Olives in Mission Viejo. And they say they had a little care our caregivers group on the side. And I really didn't get engaged in a caregiver group again until years later, when I decided to give back, to pay it forward. And, and I convened a group of wives at Silverado San Juan to just help them understand and to have a place to talk, and to help with whatever I knew about this journey and how to get through it.
Steve O'Leary 15:23
So how did you go about starting the group? So that's clearly you started a group on your own right? Like, like, “Hey, I can do this.” And how did you get it together? Did who helped you gather the people? Or would they people you knew already,
I think it was kind of an accident, because I was I was going to Silverado. I was working with the memories in the making group, and working with some of those spouses that live there. And I got to know some of the wives of those men in the in the art groups. And the people at Silverado asked me if I wouldn't start a little group. Because they knew that I was talking to these wives and encouraging them and helping I was sharing. So the people at Silverado asked me to pull a group together. And I thought it was kind of a natural thing to do. I certainly felt like I needed to give back, I was given great training by Alzheimer's. And I could help these ladies understand what they were going through, and what might be in front of them, and how to cope how to accept and adjust to new challenges.
Steve O'Leary 16:39
How did how did this group make you feel as you were conducting the group,
I really felt good about the fact that I thought I was helping them. And their responses to me was that they were thankful for the help. So it was a good exchange.
Steve O'Leary 16:56
And Tom was still alive at this point, right?
Yes, Yes, he was.
Steve O’Leary 17:01
Did this cause you any frustration or anger about conversations and flashbacks you would have about Tom and your relationship?
No, actually, we discussed and I discussed them openly and compared notes. I mean, if someone was, if one of the other people were just entering a period of time when they were experiencing such and such with their spouse, and didn't know which way to go, I could help with part of my story, or what helped me get through that part. So it was just a really natural flow. With the group, they were very open, I made sure they knew it was private, and that they could say whatever, and we discuss whatever subject they happen to come up with each time.
Steve O'Leary 17:51
What might be some of the hurdles that someone new joining a group would feel? And how would you suggest that they, you know, think about joining a group. When they go to a group, how should they approach it?
I think many people are, are not prone to talk about personal things. And think they can handle it on themselves. I've been one of those actually. But it's so helpful to share, to hear how other people have dealt with some of these same things. Just to know that there are other people out there going through this journey, too. That was a monumental thing for Tom and I to when we first went to our first group to find that there were others out there, we weren't alone.
Steve O'Leary 18:40
How difficult is that when people start in a group to get open? Or does does it start right away for you in the people that the join your group? Or are there any suggestions? I know that one of the things that I've experienced is they've got questions almost written down sometimes about things that they want to know about. And it's all about care and etc, things that they're on their mind, but they're not really very willing to talk about themselves and their own experiences in the beginning. Have you found that to be the case? Or is that something different in your group
In the group that I had at Silverado, I didn't find that anyone was hesitant. Some people didn't come. So that was hesitant. But the people that actually came, even reluctantly, I think they just eased into it nicely. They understood that we were all in the same boat. And we're just sharing and helping one another.
Steve O'Leary 19:45
What's been the most valuable thing that you received from attending support groups?
The education was immense. But I think it just the feeling that I could do this. And it was good for Tom. And he actually enjoyed the camaraderie of it, he was a very social person. So he was always wanting to be around people. And it gave him a safe place to enjoy being around people.
Steve O'Leary 20:17
As things advanced with Tom and you were attending these groups, did your perspective change about the value of what you were getting out of the group was a different? wasn't as much educational? Was it something else?
No, I think actually for us. He was at home with me for quite a long time before he went into care. And this was long after those initial care support groups. So I was certainly using what I'd learned. But I wasn't going to support groups. I was really trying to take care of Tom, keep my daughter afloat, keep my business afloat. And I just trudged on.
Steve O'Leary 21:01
How did you manage all that Cleo?
I look back and I don't know. You just do what you have to do. And luckily, thankfully, Tom was pretty mellow. He was pretty easy going. Keeping track of him was hard, because he was athletic. And he always wanted to be out jogging. And wandering dangerously was the thing that actually got him into residential care.
Steve O'Leary 21:30
I think you talked about this connection that you felt with other people. Maybe you could expand on that a little bit. I think that people think that the support the difference between the Alzheimer's group, even I remember, the educational group was great. But the groups that you're conducting, on your own with people have a similar experience or going through the same experiences. How was it emotionally free for you attending those groups?
When I was guiding a group, there were, there was one specific time that comes to mind right away. Because it was a situation that I was not familiar with. I'd read about it, learn about it, but had never experienced on this. This woman's husband was getting very aggressive, dangerously so. And I was pleading with her to get him into care because she was in danger. That was very troubling.
Steve O'Leary 22:39
Sounds like even though you hadn't experienced it. you'd heard about it.
I knew how dangerous it was for her.
Steve O’Leary 22:47
If you were advising somebody about thinking about joining a group, what would you say to them?
How to not hesitate? Because it's, it's so good to share a good and bad. It releases it. When you put it to voice it makes it less powerful. And it's just I gain from sharing. And I think most people do.
I would have benefited finding your group
You would have been certainly welcome.
Steve O'Leary 23:23
Was there anything particularly redeeming for you coordinating a group?
I was happy that I could give back.
Steve O’Leary 23:29
Well, I think we can all say you did a great job. You're also a caregiver in addition to being a support group advocate. I think one of the fascinating things about your story is you've been in all sorts of different kinds of groups and gotten something some of this stuff was valuable. But if you had to think about just as a general concept of being a caregiver, what would you say to people about being a caregiver and advice you would give them?
Make sure you take care of yourself too. That’s something it's too easy to forget or put aside. Just for me the most important thing my most important job was maintaining Tom's dignity and his independence and protecting him and helping him to enjoy life as much as he could, while he could.
Steve O'Leary 24:32
Sounds as if Tom was always at the forefront of your mind. And you were always thinking about who was best for him,
I was but I. But at the same time my daughter was six months before Tom was diagnosed, my daughter was diagnosed. After being mentally ill for many years since preschool, we knew about it. And so it was a pretty difficult several years.
Steve O'Leary 25:04
Yeah, I don't think we're going to go down that path. It's just safe to say, ladies and gentlemen that she may speak with a quiet voice. But we have an incredibly strong woman in front of us today, who's been through a lot and come out the other end. And she's benefited from people who've helped her. And more importantly, she's helped many others in the process. So thank you, Cleo, for coming today and sharing your wisdom about support groups and your, your journey.
Thank you so much. It was a pleasure.
Thank you for sharing that.
Steve O’Leary 25:43
Okay, well, this concludes our support group podcast. Like I said before, I've been a member of several different groups. And I think Cleo put it well. Don't hesitate get involved, they can help. So look for future podcasts from Spotlight on Care. One of the ones we're going to be doing in the future is going to be on legal issues that you should be concerned about, and think about and how you prepare for things that you need to have accomplished. As the disease runs its course and it's going to be next.
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