The co-hosts are joined by business owner and friend, David Willke who recently lost his wife Jill to early-onset Alzheimer's disease. David shares his experience raising his children while serving as a caregiver to his wife and the challenges he faced trying to create a normal childhood for his girls.
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. Hello, everybody, welcome to Spotlight on Care. We're very excited to have Dave Willke with us and also, I have my co-host, Virginia Naeve here.
Dave is going to talk a little bit about kind of a unique situation, early onset. His wife, Jill had early onset, and he had children at home at the time younger children, and it's a different experience. And so we're gonna ask him some questions about it. Before we get started, I just like to talk about this whole area of children themselves and how they learn. And what I got out of the whole experience with my kids was communication was critical. Being there for them at their own speed, realizing that grief was going to go for them on their own path, and you can't kind of control the process. So for me, it actually brought our family together, sadly, but it's one of those things that, you know, we go through and we have to figure out how to cope the best we can in the process.
Virginia Naeve 1:34
Well, you know, this is going to be interesting for me because I was of course dealing with my mom. And I had two teenagers at home but it's different when you deal with a grandparent than a parent. And this I know, I'm going to learn today. So welcome, Dave.
Steve O'Leary 1:52
Well, let me introduce Dave again. I've known Dave Wilkie for seven, eight years now. Quite a while. Dave and I have been in the same men's caregiver group for quite a while and have shared stories, shared tears together, have been together. Dave also runs a successful company called New York Hardware, and it's a pretty successful business. And he's an interesting and great friend of mine. So Dave, welcome to Spotlight on Care.
David Willke 2:28
Thank you, Steve.
Steve O'Leary 2:29
And let's talk about your relationship with Jill and how it started and you know, a little bit of background on you and her and then maybe shift into, you know, when you found out that she had Alzheimer's.
David Willke 2:41
Well, actually, Jill and I first met on a sailboat race to Catalina and ended up spending a week, or when we first met, spending the whole weekend together because you race to Catalina. Spend the night. Race up and down the coast of Catalina. Spend the night then race home on Sunday. So we didn't know each other before that and that was the beginning of our relationship and it was full steam ahead right away. I told her I loved her within the first two weeks of dating her. We got married or engaged a year later and married a year after that. And started having kids pretty much right away because we were both in our mid 30s. And neither one of us had been married so neither of us had kids. And we were excited to have some kids. And so we had daughters and two of them.
Steve O'Leary 3:31
What are your daughter's names?
David Willke 3:39
Brooke is the older one and Paige is the younger. They're two years apart. And they were 11 and 13 when their mom was diagnosed with - well, originally diagnosed with FTD.
Steve O'Leary 3:47
And then you found out that she had a form of Alzheimer's, right?
David Willke 3:52
Yeah, we did some more extensive testing and they diagnosed her with Alzheimer's, which back then, you know, there was no real test that you could do for Alzheimer's. And so they did extensive verbal testing and what not and came up with a diagnosis.
Steve O'Leary 4:10
So what was it like for you when you found out? I mean, what were some of the reactions you had when you learned that Jill had it? What did you?
David Willke 4:20
I cried everyday for probably a year. I mean, just sobbing like it was- I didn't want to cry in front of my kids because I wanted to be strong for them. Plus, I didn't get the courage to tell them or figure out a way to tell them or how to word it for about three months and I didn't want to hide. I didn't want to show weakness in front of them. So I would get in the car and drive around and literally sob for hours every day for probably a year.
Steve O'Leary 4:54
Was that because your sense of fear of what was going to happen or sense of loss? Or what was going on in your head?
David Willke 5:01
Well, a lot of people say that crying helps relieve stress. And I think at that point, it was just stress of fear of the unknown, not having any idea what was going on, getting up at four o'clock in the morning and just powering through Google searches of Alzheimer's and FTD. Just trying to understand, you know, what the hopes were.
Steve O'Leary 5:28
Would you mind explaining what FTD is for our audience?
David Willke 5:31
Her initial diagnosis was Frontotemporal dementia. And, as probably most of the listeners already know, dementia is the universe and Alzheimer's is one of the galaxies within that universe and so is FTD. And so that's the easiest way for me to describe it to people. Within Alzheimer's, there's I don't know how many different kinds now. I think back then there might have been 15 different kinds of of Alzheimer's and maybe there's even more now. I don't know. And FTD is something completely different, but it's still considered dementia.
Steve O'Leary 6:17
So what were your daughter's reactions to learning that their mother had Alzheimer's?
David Willke 6:21
I vividly remember the day, the time. It was a family dinner. It was a Sunday night. My 11 year old was sitting to my left, and my 13 year old was sitting to my right. And I had finally figured out a way to word it that I was hoping would make it easy for them.
And I told him that the doctors had finally figured out what was wrong with mom. And it's something that they can't fix. And so you guys are really lucky because now you're going to have a stay at home mom like your friends. And she's going to be here all the time to take care of you guys. And this was about two weeks before Page's 11th birthday or 12th birthday. I can't remember exactly. And she goes, Oh, okay, great. So what are we gonna do for my birthday dad? And it just like that was it? It was like, they had no idea. You know, like, just to them it was mom's gonna stay home now.
Steve O'Leary 7:33
That's very nice way of saying it, isn't it? Yeah, I can see that. And certainly that's true. What happened as the disease progressed for them? What were some of the challenges that they experienced and you experienced with them?
David Willke 7:46
Well, actually, in hindsight, those challenges started years before. The kids were doing their own laundry, loading and unloading the dishwasher, folding their own laundry. When we would go on trips. We have a boat. We'd get over to Catalina quite a bit. And, you know, Friday afternoon would roll around, Jill will come home from work and we're waiting for her to pack and the kids have got their own, they pack all their own bags for the trips and stuff. All their friends' parents are moms would always pack, you know, their bags for them to go out of town for the weekend. My daughters packed their own bags years before their mom was diagnosed.
And then it got to the point where they would pack their mom's bag to go out of town for the weekend. This was before the diagnosis so that we could get out of the house because she just couldn't quite get it all done. You know, everything was just sort of not really finished. The mail was stacking up. It was always her thing that she opened all the mail and sorted through it and gave me the stuff that I needed to deal with or that she didn't understand. And those piles just kept getting deeper and deeper. And I was busy at work so I didn't get a chance to help her get caught up on that stuff. And yeah. So then after she was diagnosed, everything I just mentioned continued. She could still drive, still knew her way around town, and still could go to the grocery store and shop. And she could still cook. So, you know, same with anybody that has Alzheimer's, eventually all those things start to go away. And that's what happened over the next four years.
Steve O'Leary 9:34
Was there any difference between the two girls in terms of their reaction as she started to progress after the diagnosis? Did either of them react differently to what was going on?
David Willke 9:45
Yeah, well, the older one is the one that felt that it was her responsibility to take care of her sister and to take care of her mom and to take care of me. So, and the younger one was Hey, Dad, When's my birthday? You know, or what are we gonna do for my birthday? I mean, that was her. She was kind of shielded from everything and not as much of the responsibility was put on her because her older sister felt the responsibility to take care of everybody and the family. She felt like she was the person that was in charge in the household.
Steve O'Leary 10:21
Did she ever talk to you about that responsibility and feel like that was more than she can handle or should have to handle?
David Willke 10:30
It’s such a long time ago. It's hard to say and there's so much I don't remember, you know. You just block it out, you know, your brain changes chemically. You know, and you just kind of like, it won't allow you to take on too much. And so in, like I couldn't even remember my employees names at one point, you know. I don't have that many employees. You know, at that point, I may have had five or something. So yeah, um. I know now how much pressure she felt but I don't believe it was pressure that I was putting on her. I think it was pressure she was putting on herself.
Steve O'Leary 11:08
What kind of pressure was that?
David Willke 11:11
Well, just to make sure that everything was okay for her sister. I know that it was hard for her. And I remember that we would get in the car and go drive around the neighborhoods so we could talk not in front of her mom and not in front of her sister. But I don't remember what those conversations were about. But I remember they happened all the time, several times a week if not daily.
Steve O'Leary 11:37
So that's kind of a coping mechanism that you and she found a way to communicate and help her and you?
David Willke 11:45
Well, yeah, and to keep arguments out of the house in front of the other people and try and keep sort of some sense of civilness around the house. I felt like she was just constantly acting out. And I was at wit's end to myself just with everything going on, and trying to run a small business and, you know, having a special needs wife and, you know, teenagers,
Steve O'Leary 12:12
You say she was acting out? What were some of the things that she did?
David Willke 12:18
Well, it's hard to define what was because of her mom and what was because she was a teenager. Yeah, for sure. I mean, you know. Sure they were drinking. Sure they were smoking pot, you know. How much? I didn't probably like. Me when I was growing up, I don't think my parents had half of a clue of what was going on, you know, outside the household.
Steve O'Leary 12:44
Mine didn't either, by the way.
David Willke 12:48
So, so yeah, and there was a lot of that going on, you know. The girls didn't get in any trouble. You know, they didn't, you know, get pulled over by the cops for drinking and driving or ever gotten in trouble for using drugs or anything like that. But I know it was all going on.
Steve O'Leary 13:06
What else involved at home? Was there any changes that started to happen as Jill got worse in terms of the girls? In terms of having them having to do more or-?
David Willke 13:17
Well, so you know, it's, it was always, okay, who's in charge of mom, you know, who's going to be home? You know, there's three of us, you know. You know, we had a house cleaner. And we paid her a certain amount of money for each time she came. And when she came, she was there for the better part of, you know, half a day at least. So the least expensive way for me to have daycare was to have her come twice a week. Clean the house twice a week. My kids thought that was normal. You know, you got their beds changed and all their laundry done twice a week. I mean, who gets that right? Especially because we have a 1600 square foot house. So that was a big change for them that they thought was kind of normal, and um, or very normal. What do you mean, she's not gonna come twice a week anymore? Mom’s in full time care facility, but she still needs to come twice a week, right? And I had her making meals for us because she was a Hispanic lady that makes great meals for her family every Sunday. So I'd have her make extra and bring it on Mondays. And then we use that to eat for the next couple of days for dinners and stuff like that. That was kind of one way that we made some modifications just so that we could, you know, so that I had more time to do whatever I needed to do other than feed the family.
Steve O'Leary 14:45
So when the time came to make the decision about placing Jill in a community how did you talk to the girls about that?
David Willke 14:56
Well, it was a long term conversation. And you know, frankly, the reason that that conversation started so early was because of the very first thing that I learned when I met Steve. So the very first day in the Alzheimer's support group meeting, the note that I still remember writing down first was is, you know. Alzheimer's is a, it's a progress of progression, you know, and there's milestones during that period during that, that happened. And you will almost always find that every time you get to the next milestone, and you've made the decision to take the car away, or put her into a care facility or go to a different doctor, or whatever. You realize that you should have made that decision six months ago. And that was very impactful. As you can see, I mean, seven years ago, or something eight years ago, I heard that for the first time, and I've probably repeated it at least 100 times since then to people. And because I learned that early on in the process, I tried to stay ahead of the decisions, but so many of them were 99% emotional. And so I started talking to the girls about it, you know, and they were, you know, they were fine with that decision. They were ready for that to happen. Because it was getting to be just harder and harder and harder to have her around the house. And, you know, she couldn't really take care of herself anymore.
Virginia Naeve 16:36
How long did it take to get to that point? How many years?
David Willke 16:41
About four years. Yeah, we put her in. And yeah, we found out in January, and it was four years later in July. Maybe three and a half years. And yeah, so I didn't have the courage to do that myself. I called my mother in Northern California and I asked her to come down and help. And so we had to find some communities that were near us, and went and made appointments and interviewed, you know, at those communities and checked the communities out. But I seriously couldn't have done that on my own.
Steve O'Leary 17:18
Did you take the girls to see the communities before you placed Jill there?
David Willke 17:23
I believe that once we decided on the community that we were going to put her in, we, I you know, we did because we had to move the furniture and stuff in. And so I asked the girls, you know, what around the house, do you think we should put in her room so that, you know, it reminds her of the house. And and so both my daughters and my younger sister were the ones that actually put her into the care facility. At that point, we had full time daycare. The daycare gal knew that she was going to have to take her over there and leave her the next day and she called in sick. And my sister happened to be in town helping with the moving of the furniture and whatnot. And I was going to an Alzheimer's support group meeting that day. And I got the call that she was there and she didn’t want to stay. So, I had to get her on the phone and talk her off the ledge and then she calmed down and they left her and that was that.
Steve O'Leary 18:43
I remember you saying that the girls had kind of an unusual reaction after she moved into the facility. Do you recall what you said?
David Willke 18:54
Well, they encouraged me to date if that's what you're referring to.
Steve O'Leary 18:57
That's one of them. But I was thinking about how they spoke about the relief they felt. And you know that it was a lot. Well, why don't you talk about that?
David Willke 19:11
Well, you know, frankly, I don't remember that part. If I told you guys that then I'm sure it happened. I don't remember the specifics of that. I just know that actually, for the next month, I sat on the couch in the living room and stared at the wall. Like that was all I could do is get out of bed, sit on the couch, stare at the wall. Sowhat I told you guys back then, I'm sure happened, but I don't remember anything.
Steve O'Leary 19:42
Yeah, I remember one of the girls saying, Dad, I don't know how to say this, but I'm glad that mom is in a facility now.
David Willke 19:50
Yeah I know for sure that they were relieved. We were all relieved, you know. It was still a very surreal problem for me. Moment, period in my life. But, you know, the kids. We were relieved. Everybody was relieved. You know, it was like, you know, finally we have, you know, some time to, you know, take care of ourselves and not be constantly worried about mom and who's going to be at home. And is she going to be at home when we get there if we left her alone for some period of time?
Steve O'Leary 20:25
Were there any incidents that you remember, prior to moving her with the girls that stick in your mind? You know, like, you know, Paige came home and she wasn't there and she was supposed to be there. And Paige, you know.
David Willke 20:40
No. No, she was very compliant. We were very fortunate. I know, some people tend to wander but Jill was very compliant. You know, if you told her she had to stay at home, she would stay at home. She was never there for very long alone, you know. But there were periods before we put her in the care facility. Not like, a couple of months before, but before that, where she'd be home for an hour here and an hour there by herself. But she was very compliant about that so we were lucky.
Steve O'Leary 21:16
How was it for the girls in terms of the visiting her in the community? How did they do with that?
David Willke 21:26
Well, at first, it was really kind of more like fun for them. Because, you know, they're not allowed to have animals in there. So, they snuck our cat in their backpack. And you know, it was really Jill's cat. And even though this was the second family cat. The first one, you know, came with Jill, and then that one passed away. And so then Jill and the girls went and got Mellie. And so then, you know, Jill just loves cats. And so she was so excited to see the cat. And they would go in and visit at the beginning. But, you know, as the disease progresses, you know, it's just. I don't even know if they saw her for the whole last year that she was there. But you know, if anything, I would have been discouraging that because, you know, she was, you know, she was in a wheelchair and everything else that goes along with that.
Steve O'Leary 22:28
Did they ever comment about the changes that were going on with her to you?
David Willke 22:23
We talked about them. But it was really more me preparing them for the next level. Because of everything that I learned by being in our support group.
Steve O'Leary 22:47
Did you find it that was pretty helpful for them?
David Willke 22:51
I believe it was. You know, to let them know that, you know, we're gonna take mom's car away. We need to do it soon. And Paige was like, well, that's great, because I'm not driving with her anymore. That kind of stuff. And so yeah, they for sure. It was nice that they had a playbook.
Steve O'Leary 23:14
That's good. That's a nice way to say it. How has your relationship changed with you and your daughters after Jill was placed in a community?
David Willke 23:24
I felt it got better that we had more time together. Because before it was always all about mom. And so we would do things together. But you know, then at that point, they were 15 and 17 maybe. And so they were in high school. So for them, it was all about their friends. And they both were playing high school sports. They had their high school sports, they were team sports. And so, you know, Brooke was on the sailing team and Paige was on the water polo team. And so they were very active in their sporting events, but then also all the social stuff that went along with that plus being in high school. And so really what happened is because she went in and during the summer. When they were out for summer break. And so once they went back to school in early September. You know, Friday night would roll around and I would expect that we'd be going out to dinner or doing something and you know they'd say, “Hey, well, Pap-.” They call me Pappy. “Pappy, we're going to be out with our friends. We're not going out to dinner with you.” And I'm like, “Oh, okay.” And then the next Friday night, the same thing would happen. And then next Friday night, the same thing would happen. And I'm finally like, “Hey, do I have to schedule time for us to spend together on the weekend?” And they go “Pappy, you just need to go out on a hot date.” And that's how they encouraged me to start dating instead of, you know, waiting around to spend time with them on the weekends because they want to be with their friends And whether their mom had Alzheimer's or not, or whether we were divorced or, you know, single parents or whatever, the same thing would have happened. They just moved on with their lives. And I think that now, my oldest is grieving the most. Or I'm not saying the most. She's starting to grieve. I don't think that she's allowed herself to grieve until about a month ago. And-
Steve O'Leary 25:31
So Jill passed away...
David Willke 25:34
May 1st of 2020. And you know, like I said earlier that I sobbed and sobbed and sobbed. Well, that's what Brooks doing. She's in Savannah at college. Savannah, Georgia. And she, you know, basically tells me she's crying all the time, and that her therapist, you know, tells her that she's grieving. And I thought, wow, I hadn't really put those two things together. Because I mean, I think my sobbing part of grieving happened like, immediately. And for her, you know, she held it together until about a month ago, and then she just has been sobbing hysterically every day.
Steve O'Leary 26:17
How about Paige?
David Willke 26:18
Paige so far has figured out how to cope and she actually, it's interesting that you say that, because she did actually start going to therapy for the first time in her life, about a month ago, maybe two weeks ago. I mean, just very recently, in fact, she called me on the drive in this morning and told me that her therapist was helping her through some stuff. But none of it has anything to do with her mom. It's all, you know, being in college, 19 year old with four 19 year old female roommates, and, you know, being in a sorority, and having a boyfriend and getting good grades, and still trying to exercise and eat healthy. You know, she's got a lot on her plate. And so the therapy that she's doing right now is all geared towards, you know, anxiety and social pressure and things like that. Whereas her sister is going through therapy and dealing with the grieving process and the blame. She blames me for everything.
Steve O'Leary 27:23
In what way?
David Willke 27:25
Well, it's just, you know, everything was my fault. You know, I didn't, you know, take care of her. I didn't. She had to do everything. She took care of the family. You know, she keeps bringing that up. And that some days is better than others. But we're still always. At least, I'm the kind of person that does the very best that I can every day.
Steve O'Leary 27:50
So would you say one of the things you've learned is that it's, you can't program when this is gonna happen and you have to understand, like, that's kind of accusatory. I mean, you know, but that's her getting it out.
David Willke 28:05
Oh, I don't take it personally. And I need for her to blame me as much as she needs to blame me to get through what she needs to get through. And I just take it. And she said some of the meanest things. She said the meanest things that anybody's ever said to me in my entire life on multiple occasions. I mean, horrible things. And, you know, I don't write them down because I don't want to remember them. I just know that they were bad. And she's getting it off her chest. And I hope that soon, not someday, but soon she's better because I think a parent can only be as happy as their saddest child and my saddest child is pretty sad right now.
Steve O'Leary 28:50
Wow. That's one to write down.
David Willke 28:52
My barber gave me that.
Steve O'Leary 28:56
David Willke 28:57
Yeah and I'm gonna go get my hair cut after this. I'll let him know that he's been quoted on a podcast. Jerry Lewis is his name.
Steve O'Leary 29:04
David Willke 29:06
Jerry Lewis is my barber's name.
Steve O'Leary 29:08
Anything happened at the passing that you recall in terms of the challenges with the girls when Jill passed?
David Willke 29:16
No, again, that was the next level of relief. Really. I mean, putting her in the care facility and having to not worry about her on a regular basis was the first level of relief and that was a huge relief. And when she passed, that was another huge level of relief for everybody.
Steve O'Leary 29:38
So is it fair to say in your experience that the kids are not processing, your kids at least, are not processing things anywhere near at the same rate you're processing?
David Willke 29:49
Yeah, a lot of people ask me, How have your kids been dealing with this? And I kind of described it to them, like, you know, somebody that's born without one arm isn't handicapped in their mind because it's all they've ever known. Well, there were signs of Jill having Alzheimer's. Five years. Realistically, 10 years before she was actually diagnosed. So my daughters have always known their mom in their minds to be less capable than other moms. And they didn't know the vibrant, outgoing, fun, loving, sailing, sailboat racing, jump in the water and goes swimming and snorkeling and watersports mom that I married. They didn't know her. So their loss, for me, it was very early on and for them. Yeah, I'm not sure when it'll hit Paige, if ever. Because she was so young. That's all she ever really knew. You know, and the older one. Yeah, she's starting to really feel it right now.
Steve O'Leary 31:16
My daughter, Casey got remarried, when Patti was in facility and it was one of the most emotional times. She couldn’t talk to me. Here I am, you know, walking her down the aisle, and she couldn't talk to me. She had to talk to her brothers. She had talked to her future husband, but she was really torn up because her mother couldn't be there. So you may find those moments, those special moments that especially girls think about being with their mom. They may come up, you know. Anyway, I remember that when you were talking. I was just thinking. Yeah, I remember, I felt sad that she couldn't talk to me but I understood that all I was going to do was reinforce what she was feeling. You know. So Dave, let's move on. I mean, wonderful. Wonderful. I mean, that was just a great story you told there about the process. Is there anything you'd like to share about the whole process of being a parent with children, when you find Alzheimer's? Like, you know, this is the galvanizing thing that I left with, or I have still holding me, you know, about this, about what you went through? So anything like in, you know, like, finding help, or, you know, communication with my kids, or what, you know, anything that was like, hey, this is what allowed us to get through this?
David Willke 32:45
Well, I think I've already mentioned this a couple of times. Being part of the support group and having people that were further down the journey than I was, and, therefore being given a roadmap or a playbook. And then me being able to reiterate that to my daughters so that they understood what was next. And just being able to keep that communication open with them. And trying to allow them. Trying, because, you know, normal childhood- you know, what's a normal childhood, right? But for them, I just wanted them to be able to do their sports and go out and be with their friends, and try and have what I would consider to be a normal childhood of how I grew up having two parents hitting on all cylinders at home. Stay at home mom. My father worked and provided. Me and my sisters got to do, you know, all the normal, what I consider normal things, and I wanted my daughters to have that. So letting them know what's going to happen with their mom, and doing my best to shield them from it so that they could grow up with their friends and what not. I think was the right way to go about it.
Steve O'Leary 34:13
It certainly sounds like it was, you know, and I remember our meetings and you would come and I would just my heart was so sad for what you were having to go through. I mean, it's not easy for any of us. But what a challenge to go through with young daughters and how well they've handled it and how well you and they handled it together. So bravo.
Virginia Naeve 34:36
That's really, you’re to be congratulated and thanked. You're a wonderful dad. I can tell. Kids are difficult to raise when things are really going well. And then you were hit with an early Alzheimer's diagnosis with your wife. And it sounds to me like you handled it beautifully. I'm glad they're going through some therapy. That's very healthy for them. But thank you.
David Willke 35:05
Thank you guys for allowing me to share this because people that have young children at home with a parent that gets diagnosed. I am open. I’m available. You can get them in touch with me. I'm happy to talk to people and let them know that there is a future and this will pass.
Steve O'Leary 35:27
And you've already done that a couple of times where you've spoken to people who have this particular experience. A unique experience. And, you know, I think that's one of the best things about being a caregiver is the opportunity to give back to others who've experienced it. And I certainly feel that myself.
David Willke 35:47
So yeah, when you're a caregiver, the most important thing is take care of yourself first. You know, the old cliche, put your oxygen mask on first is very, very important. But after that's all over and you've had some time to grieve, I feel like I really am very willing to help people that are going through this because it's a very unique, difficult situation.
Steve O'Leary 36:13
Well, Dave, thank you so much to our audience. I hope you enjoyed this as much as we did and that you'll tune in for a future Spotlight on Care episode. Please check our website and there are lots of great pieces of advice and this is certainly one of them.
Virginia Naeve 36:29
Thank you so much for joining us today, Dave.
David Willke 36:32
Thank you for having me.
Steve O'Leary 36:36
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