Co-Hosts Steve O’Leary and Virginia Naeve share their personal caregiving journeys, provide an overview of the series, and offer some initial caregiving tips. What would like to hear about next? Email us at mwitbrac@uci.edu.
Co-Hosts Steve O’Leary and Virginia Naeve share their personal caregiving journeys, provide an overview of the series, and offer some initial caregiving tips. What would like to hear about next? Email us at mwitbrac@uci.edu.
INTRO
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.
Steve O'Leary
Hi, this is Steve O'Leary. You'll shortly hear from my co-host, Virginia Naeve, but a little background on me. My background’s in advertising and marketing. I've got three wonderful children and three incredible grandchildren. And I've been working with UCI MIND and other nonprofits for several years now, in hopes of helping them use some of my skills to move the key forward for them. In addition to that, I run a men's help/support group, which really includes men who have wives who are dealing with Alzheimer’s, and it's a great opportunity for us to share insights, help each other in terms of how to deal with this terrible disease. How this all started for me was my wife, Patty, who is my lovely bride of 48 years, wonderful marriage. Actually, the love of my life. So, she was first diagnosed with Alzheimer's, actually with MCI (mild cognitive impairment) in 2010, then Alzheimer's in 2012. And ultimately, she passed from the disease in 2017. During that time, Patty was an amazing person, in terms of her commitment to dealing with the disease. Right up front, she took responsibility for the fact that she had it. She donated her time in terms of testing, several rounds of testing at UCLA and then eventually at UCI MIND. She did a series of spinal taps, I think it was three in total. And ultimately, she donated her brain. So for me, she was the ultimate, you know, cause that really got me heavily involved with UCI MIND and the desire to help others. So Virginia, how about a little bit of your background?
Virginia Naeve
I'm very happy to be co-hosting this podcast with you, Steve. I'm hoping that we can help a lot of people who are facing the fact that they've had to become a caregiver for someone they love. My story's a little different from Steve's in that the significant person in my life with Alzheimer's was my mom. A little bit about me, I've been happily married to my husband, Bob for soon to be 36 years. We have two grown children, Andrew and Alison, who are up and out of the house. And right now, we are sharing our house with two new rambunctious Siamese kitties. Anyway, I grew up in Southern California, and a very close family with two brothers and my parents, Bob and Helen Simpson. They had a very long and happy marriage. I had a great childhood. And I was always close to both mom and dad. My folks never moved from the house I grew up in and it was just a 45-minute drive from where my husband and I raised our kids. So therefore, we were always together for holidays, birthdays, and we even took family vacations together. My parents are very easygoing and fun to be with. In 2005, my dad who was still working as an LA superior court judge, passed away very suddenly from heart attack, and shocked all of us. At the time, my mom was 77. And I thought in really good health. I found myself driving to mom's house really often to help her with life in general. And at that time, we all started noticing some really different and rather disturbing behaviors from mom, and we all chalked it up to grief. Talk about rationalizing. We rationalized her behavior for the better part of a year, which looking back was not only bad, it was dangerous. We blamed it all on grief. It didn't take long before I’d go up to her house and I’d see that she was letting her bills pile up. And she was always proud of herself for taking care of the bills and paying them on time. She had past due notices on several piles. And then I would look in her refrigerator to see what food she might need at the grocery store. And there were things like leftover frozen dinners, and nothing much but Lean Cuisine in the freezer. There was one time I was up at mom's for two days in a row. And on the second day, I stopped on the way up to pick up some burgers and fries. Really healthy lunch. But she loved that. And we were sitting at her kitchen table eating. And I said, Isn't it nice? You have your best friend Betty right across the street, mom. You can see her all the time. And she looked at me and she said, I haven't seen Betty in months. I said, Mom? We talked to Betty yesterday in your driveway for at least 20 minutes. And she said, No, I haven't seen Betty in months At that point, she picked up her hamburger, and she threw it at me. I was shocked! But I picked up what was left of her burger and I put it back on her plate, trying to reassemble it. And I went back to her closet. And I found a shirt that I could wear because I was a mess. And I came back out to the kitchen, and she acted like nothing had happened. She didn't even ask why I was wearing her shirt. It was about that time I thought, oh boy, I really need to figure this out. There's something most definitely wrong. And we've got to stop pretending that it isn't. She was, she wasn't just repeating things, her behavior was getting strange. So that was the beginning of a very long journey. Eight years. I was busy raising kids. But I had to be up there a lot with her for a while till we figured all this out. And as you know, I was realizing she wasn't safe. In 2009, she had progressed from mild cognitive impairment, what they call MCI, to more clearly Alzheimer's disease. I found a lecture series at UCI MIND called the Family Education series. And I started going to see what I could learn about Alzheimer's. I felt like I had found a resource and a place I could learn about this disease. Bob and I love supporting the research that's going on there because they're very serious about finding a prevention or a cure. They're lovely people and we consider many of them our friends now. So that's basically my story in a nutshell, Steve, right there.
Steve O'Leary
Well, great Virginia. That, you know, the color at which you shared is really interesting and how personal it was for you. I had a similar story with Patty. And I think that the result of this for me was a realization that there are lots of us out there as caregivers who are struggling from, you know, the very beginning of dealing with the disease all the way through to the end. And the benefit to all of us is learning from others. I think you and I both got a lot from talking to other people about how they were dealing with the disease. It comforted us. It made us realize we weren't alone. They made us understand that, you know, there are solutions and there are ways to cope with this disease. And I think that we're seeing many of those kinds of issues. And that's what you'll hear from this program as we go forward. We're going to be trying to interview people who are you know, men who are husbands dealing with their wives or having to contemplate that process, wives who are talking about their husbands and what their process has been with them. And probably, even more importantly, we're also going to be talking to adult children who are dealing with their parents, as Virginia did with her mom. All different experiences, their unique. We like to say that once you've taken the journey, it's a unique journey. There are some similarities, and we'll be talking about those phases. You know, the phases from you know, like the beginning, the early stage of diagnosis, and how do you deal with understanding what's going on, acceptance, things like that. Then through the early caring phases, and eventually we'll talk hopefully about some of the advanced stages, and tips and insights that you can deal with in that area as well. And lastly, of course, there's dealing with the passing and the grief that you'll feel. And I think that these will all be very, very helpful. As I said before, I think the important thing is to remember that even though we're going to be providing some insights through these interviews with other caregivers, each of you are going to be going through your own unique journey. Hopefully, these tips and this advice from our caregiver topics will be beneficial to you. But understand that your trip is going to be yours as well. So, Virginia, any comments you want to add to the whole idea of why we're doing this?
Virginia Naeve
Well, I must say, Steve, that since mom passed in 2013, I have just been compelled to get information about this disease and the related behaviors out there. Because when I was learning to be a caregiver, I had so little information about it. And I felt very lost and alone. I feel that by co-hosting this podcast, I might be able to help some people who feel confused and lost about what's happening to their loved one. And hopefully, people will be able to say, oh, that would have been helpful. Or the next time that happens, I can do it that way. I created a website called A New Path for Mom, which is a place where I post my blogs, and information about Alzheimer's disease. I made a lot of mistakes. I made a lot of mistakes. And some of them so bad, I haven't even written about them yet. But I will. I will. And in this podcast, I'll probably tell you a few things and you'll think, Oh my god, that was really bad. But I hope to be helpful. I have a quote from author and poet Maya Angelou, who once said, “When you get, give. And when you learn, teach.” I love that. It's on my bulletin board. And I try to think of it daily. The other reason I do this is I want to simply honor my mom.
Steve O'Leary
Yeah, those are wise words. She's one of my favorite poets as well. So we thought we'd kind of end this first session of getting to know us with maybe a tip or two about what we've learned, just to give you a flavor of what some of these interviews are going to be like. I thought the one that I would take is dealing with your children or your loved ones. As you're going through this process as a caregiver, you've got this larger family, if you will, of people who are also going through, dealing with this disease and your loved one that's experiencing it. And there are some things that you need to realize, and I won't give all the secrets of all the tips, we'll have someone talking about that soon. But a couple of key things is realizing that even though you're going through this process, they're going through it as well on their own schedule. That you may be going through it on your schedule, but to expect them, whether it's your children, or a relative, could be a sister or brother of your loved one, all of them are going to be going through this on a different pace. And each one is going to be unique in terms of the relationship that they have with the person who has the disease. And their pace and their willingness to deal with it is going to vary and move slowly and move fast. But to expect them to be at the same pace you are - not gonna happen. So if that's the case, here's a couple of key words that I think will kind of set the stage for this discussion. One is communication. You can't over-communicate. You may think that that's a mistake. In my case, my kids lived on the East Coast, and they were dealing with the change in their mother and they weren't able to be there. So for them, seeing wasn’t possible, so hearing or reading what was going on was critically important. So pretty regularly, I would think once every couple of weeks, I would send a note with here's the status, here's what's happened, especially when they were major changes to what was going on. Another issue is keeping them involved. And this requires a little bit just more than sharing information. It's having one-on-one discussions with people who care about your loved one. It may sound hard, but they need to be able to voice what's going on in their head and be able to talk about it as well. And then keeping them informed about decisions. They're going to be decisions that going to have to be made: home care, taking the car away, things like this are going to go through the process. So keeping them informed of these decisions, and sharing your own insights and your own challenges as you're experiencing them, that's also important. So I think if you remember these three things: communication, awareness and keeping them involved one-on-one, letting them know about decisions that are being made, and realizing ultimately, that this is a process that they're going to go through on their own.
Virginia Naeve
I love that, Steve, that's really, really good advice. I didn't have that perspective, because my kids weren't grown. They were very busy in high school, and they weren't watching their mother come down with Alzheimer's disease, it was their grandmother. So, it really was different. I did learn a lot about this disease. But for me, the two most important things I learned were the following. One, when you say the word Alzheimer's, people who don't know anything about it, tend to think that it's just a memory loss issue. It is so much more than memory loss. It's personality changes. It’s lack of judgment. It’s lack of reasoning skills. And eventually, a lack of ability late in the disease, to be ambulatory and to actually even do something as simple as swallow. The second thing that I really, really learned was that you have to join their world. When someone with Alzheimer's says something, at that moment, they believe it 100%. It doesn't matter what it is. They believe it. It's their world. And you have to join it.
Steve O'Leary
Yeah, you have to live in the moment. Right, Virginia?
Virginia Naeve
Yes you do. Absolutely! It feels really wrong. I've got to say, the one thing I couldn't get past was when my mom started talking about her second husband. She was married for 55 years to my father. She didn't have a second husband. I had a tough time with that one. But really, the kindest thing I could have said to her was, really mom? I'll bet he was handsome. As strange as that feels and sounds at the time, it's the kindest thing you can do. You have to join their world.
Steve O'Leary
Well, hopefully you enjoyed this, our introductory session of Spotlight on Care. And we're very excited, both of us, to be participating in this effort by UCIMIND and UCI MINDcast, a new program that we're launching. So, we look forward to hopefully you're listening to future podcasts. And as we said, we're going to be interviewing friends and other members of our unit who've gone through some of these challenges as well. We hope to have at least one of these per month up as we go forward, and we hope to get some feedback from you. There'll be an opportunity for you to let us know what you're thinking and share any insights that you might have as well as maybe suggest another topic that we might take on.
OUTRO
Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information visit mind.uci.edu.