A 50-Year Marriage Rewritten by Dementia

Dr. Donald Wiss: 0:00

Yeah, but what I do is, when I go in there, I always have a smile on my face when I see her. I give her a big hug, I give her a kiss on the cheek, and every single day, I tell her I love you, and I'm so grateful for the time we have together. I tell her that every day, in the beginning, she would respond now she you know, there's not much of a response, but it's okay. She, she hugs back, and that's good enough.

Barbara Hament: 0:36

Hello and welcome to season four of dementia discussions. I would really like to take a moment to thank the guests who were on this past year and to thank you the listener. I really could not do this show without you. And over the past couple of years, some of you have called me, so I am encouraging more of you pick up the phone and call me. I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232, or you can email me at dementia discussions.net so again. Thank you. I'm grateful for you, and so looking forward to another year of us being together.

Unknown: 1:19

You Ronick,

Barbara Hament: 1:31

hello and welcome to dementia discussions, the podcast for and about caregivers today on the show, I am so happy to have Dr Donald Wiss. Dr Wiss, was someone I met at a small board and care here in Los Angeles, and along with his wife and since, has joined my support group a couple of times, an in person support group, which is a pleasure, and so without further ado, Dr Wiss, welcome to the show. It's great to have you. Thank you for the invitation. It's nice to be here. So I did happen to meet Deborah one time, your wife, and of course, I didn't know her years ago who she was. So take us back a little bit to your wonderful wife and how you know, just a little bit of history about about the two of you? Well, my wife

Dr. Donald Wiss: 2:23

is actually a native Southern California native, and she is the eldest of five children. She grew up in a couple of the communities here, right here in Southern California, and her father, then, who was an aerospace engineer, took a job in the Inland Empire, and she went to high school at Redlands High School. Sadly, both of her parents divorced, and her mom went back to work, and she was actually thrust into being a big sister as the oldest of five children, with the youngest being 11 years younger than she. So she had some real experience at being a big sister and a surrogate mom for a good period of time. When she finished high school, she wasn't sure what she wanted to do, and ultimately moved to Palm Springs and became a respiratory therapist. She got a certificate and worked in the desert for a couple of years, and then moved to Los Angeles, where she got a job at Cedars Sinai. And lo and behold, some seven, eight months later, I showed up at Cedars as a brand new minted intern, having just graduated from medical school, and after a few hellos and whatnot in the hallway, in the cafeteria and in the floors, I asked her out on a date, and kind of went from there, oh my god.

Barbara Hament: 3:31

What year was that you're going way back, 1974 Wow. Oh my gosh, over 50 years ago.

Dr. Donald Wiss: 3:38

Yes, over 50 years ago. So we've been married for 4849 in June, and we met and dated for a couple years. So I've known her for half a century. Amazing.

Barbara Hament: 3:47

That's a great story. Did you work side by side for a lot, for

Dr. Donald Wiss: 3:51

a while or Well, we were in the same hospital. I mean, as a physician, I was in the operating room in clinics, and she was a lot in the ICU doing breathing treatments for people that were critically ill, but, you know, we would meet for coffees and whatnot, and then once we started dating, it, you know, we saw one another a lot, right?

Barbara Hament: 4:10

Wow, that's a great story. And you went on. You got married, had three kids. How many kids do you guys have? We have two, two

Dr. Donald Wiss: 4:19

sons, and we weren't a parental lottery, because they both live in LA. One lives four miles away and one lives four blocks away on the same street. Wow. The oldest one has two sons, and the youngest one has two daughters. So we have lots of friends that have lovely children that we knew all growing up, but they went off to college and they met people, and now one lives in Seattle and another is in Philadelphia and one's in Atlanta. And, you know, zoom in, WhatsApp and FaceTime are not the same

Barbara Hament: 4:44

as being in person. So your grandkids, yeah, are right down the street.

Dr. Donald Wiss: 4:49

Yeah, lots of lots and lots of opportunities to get together.

Barbara Hament: 4:53

That's great. Yeah. And having a really a close relationship with your kids and your grandkids, that's terrific. So. So then here we are, maybe 10 years ago. Was it 20 tell us kind of what you started noticing with Deborah.

Dr. Donald Wiss: 5:11

So about 10 years ago, I noticed she would be saying to me, have you seen my phone? Or can I borrow your keys, or I miss place and can't find my purse. And those occur very sporadically over, you know, sometimes weeks or months. And I didn't think a great deal of it at the time, I was crazy busy at work. I was an orthopedic trauma surgeon, and had really wild hours, and I really it didn't, it didn't seem at all. We're all as we got a hint, older, little more absent minded, a little bit more forgetful, and I ascribe that to that. But slowly, slowly, it began to happen, not every few months, but then every few weeks, and then more. And one day the light bulb went off, and I said that this is way, way, way too much. But truthfully, I kind of didn't want to believe it. I knew something was wrong, and I kept hoping that, perhaps that it would resolve or somehow magically go away. When deep down inside I kind of knew, and especially being a physician, that that wasn't the case. And then about a year plus into it, my siblings and I went on a trip to Southeast Asia, and on the trip, her confusion, memory loss, what not, was wildly on display and shocked my brother and sister and their spouses. She left a purse and a hat in one hotel, and we moved somewhere else she was and I ascribe that again, to, well, it's 14 hours of jet lag, and we're eating different foods, and we're not sleeping that great, but it was very clear that something was a miss, which then led to, when we got home, me beginning the tortuous path of finding doctors and beginning the investigation.

Barbara Hament: 7:10

So crystal clear on the trip, and did your siblings come up to you and say, what's happening with Deborah? They did

Dr. Donald Wiss: 7:17

on the trip. Both of them kind of pulled me aside just said, you know, is Deb feeling okay? Is she okay? She doesn't seem herself, uh, you know, she's much more argumentative and confused and and fortunately, I've had a nice relationship with my siblings, so they were not shy. They were very, very forthright in telling us what they observed, and they're utter shock and dismay because they hadn't. They live, one in San Diego, one in Phoenix, and we don't see them, you know, frequently,

Barbara Hament: 7:45

yeah, and they're they were concerned. It sounds like they were. So you get home, and then you start on the path of medical appointments and testing or what, yeah. So I,

Dr. Donald Wiss: 7:59

we both share an internal medicine doctor. We do all of our healthcare at Cedars, because that's where I worked. And we saw our internist, who suggested that we see a neurologist, whom we did make an appointment that turned out to be a bit tricky. Appointments were canceled and rescheduled, and it didn't go smoothly, and the neurologist kind of said she looks like she has MCI, but didn't want to do any blood tests or any intervention. And I was a little uneasy, I thought, a little bit more aggressive. Anyway, we ended up seeing a gerontologist. Oh, let's just put it this way. We just weren't on the same page. It wasn't a good fit for me, Deborah and the caregiver. And eventually her disease progressed as most neurodegenerative diseases, and in 19, I'm sorry, in 2020 she was formally diagnosed with a mixed vascular Alzheimer's dementia, and it roughly coincided with the onset of covid. So that was perhaps one of the most trying years, because if you remember, we didn't have the vaccinations, and it was, quote, the lockdown. So I spent that first nine or 10 months before we got our first vaccination at home with Deborah. We took some walks, but more or less we were home, and I will honestly say that was one of the more stressful periods in our lives. Deborah also had an unusual condition, which is called anosognosia, which is a medical term for lack of self awareness, which is different from denial. Denial is when you know, you know, I really do drink every day. I might have a drinking problem, or I like to go to Las Vegas and gamble. I might have some gambling lack of self awareness is she truly had not a clue. Feel on the face of the earth that she was impaired every gentle, kind, thoughtful way of saying, you know, honey, you know, you know you're a little more forgetful, was met with fierce resistance, which has persisted to this day, although we don't really discuss it, you know, years down the road. But that was a very difficult obstacle to overcome, because she was not accepting in any way she thought she was as normal and as healthy as you and I,

Barbara Hament: 10:29

yeah, and you're and we didn't mention this, you have a book which I read and called one life no rehearsal, a surgeon's memoir of healing, heartbreak and legacy. And in in this chapter where you're talking about her fierce denial, you call her a dementia denier, which I've never heard that term. I usually distinguish between denial and lack of insight, because in my mind, denial is kind of a willful like you're choosing not to look at what's happening, whereas in dementia, I always think of a person with lack of insight, like, it's not a willful denial, it's just not knowing not exactly what you're saying, like, having no idea that her memory is impaired, that she's forgetting Correct.

Dr. Donald Wiss: 11:18

I would agree with your statement completely. I mean it is, it's a complete lack of awareness. And I believe it is just part of her disease, some part of the brain that just doesn't allow it to

Barbara Hament: 11:30

register, that's right. And so it's so frustrating for caregivers when you're trying to get through, you know, like you just asked me that quick Wait, we just talked about this right, right at the beginning where you're kind of like, didn't we just have this conversation? Didn't we just talk about our plan for the day, right over and over again, or whatever it is, the repeated story or the repeated question, it's so hard to get, you know, like, through to you. There's no getting through to her.

Dr. Donald Wiss: 12:02

No, there isn't. And eventually you decide that you have to have a different means of interaction or communicating, because it just creates frustration on both the part of the person that has the disease and the caregiver or family or friend. All right?

Barbara Hament: 12:21

And we, we kind of, we didn't talk about the fact that actually you retired to take care of Deborah, right? So that was back. We skipped a few years there, but we jumped right in, right? I mean, you made a conscious decision to retire from your career when you hadn't planned on retiring. Is that correct?

Dr. Donald Wiss: 12:42

That's correct. I retired on my 70th birthday because I came to the realization that she could no longer leave an independent life. And as a trauma surgeon, I had somewhat unpredictable hours. I couldn't say I'm leaving at nine. I'll be home at five. It didn't work that way for me in my career, and I was no longer willing or able to leave her alone. And of course, that led to the inevitable question from many people who said to me, why didn't you just hire some caregivers? And I said, if you know Debra, that's not going to work. She had a very, very strong personality, and during and right after covid, even when I had retired, I needed a few days so I could get things done and have a mini life. And we did hire some caregivers, and a couple of them, she said, What are you doing here? Get out, dad. So even though it sounds a little bit, you know, maudlin, I really believe this. I was never trying to be Mother Teresa or a saint or a prophet. But, you know, 48 and a half years ago, I made a promise when they said, you know, from this day forward, do you take this woman to having to hold, to love and to cherish in good times and bad times and sickness and hell? So help you God? And I said, I do, and I try to keep my promises. So this is when she needed me. Is at this point in her life, not some years down the road. This is when me, her loving husband, soulmate, life partner, needed to step up, and I decided to do that. I had a wonderful 40 year career. I missed it terribly for a year or two, and then, you know, I accepted retirement and moved on. But being a caregiver, I thought would be easier, because as a physician, surgeon, critical care specialist, you know, I had an inside advantage, but that was only partially true. It was hard,

Barbara Hament: 14:38

I bet. I bet that's a huge sacrifice. That sounds like you had a big career and you were passionate about it, so to give all of that up, yeah, I bet that was, yeah.

Dr. Donald Wiss: 14:51

You know, when I discussed it with the the powers that be at Cedars, they said to me, you know, work, three days. Work, two days. You know, what will accommodate you? You know, you're a valuable part of our department. We'd love you to do. That. But my particular specialty of trauma didn't lend itself to working Monday and Thursday had I had a different kind of practice where I was doing elective, you know, hip and knee replacements or arthroscopic surgery. I think I could have done that, but my job, I just didn't think I could take care of trauma patients and then go, Well, I'm not going to make rounds and see you in the hospital for another few days, because I'm not doing days because I'm not due back till Thursday. So for me, it was either all or none. So I made the painful decision to step away, and I think it was the right one. I have no regrets, none good. I continued to be academically productive. Actually, in retirement, I wrote some seminal papers that I finally had time to actually sit down and write and publish that during my busy clinical days was much, much harder to accomplish. And of course, I wrote my book, yeah.

Barbara Hament: 15:48

There you go, yeah, and your book has been a success.

Dr. Donald Wiss: 15:52

It has not yeah and not trying to plug the book. But, you know, I promised when I wrote it, after it was published, that I would donate all of the royalties from the book sales to a local organization called opica, which is an adult outpatient Dementia Care Center here in West LA that was very helpful to Deborah and myself for a six month period prior to her admission into a memory care residential unit, I

Barbara Hament: 16:20

happen to be on the board of that, that daycare program, opica, which I know and love, and yes, opica is grateful to you, so it's thank you for that. You're welcome. Yeah. So okay, so here we are. Deborah gets a diagnosis, and this was probably, let's see about, this is 2020, so about six years ago, and you were talking about it being in the, you know, at the beginning of covid, and how difficult that was. So here you are home with Deborah, and how are things going like? How is her behavior? Six years ago?

Dr. Donald Wiss: 16:59

She was at that time, I think, more difficult than she is today. As her disease has progressed, I think her cognitive skills were still slightly more intact. She could be quite stubborn. She could be argumentative. She would push back like anywhere else. She had good periods and bad periods, but it was it was difficult, and as we emerged from covid, I decided it would be very helpful if I could hire a couple of part time caregivers, because I transitioned into not only being the caregiver, but also the individual that had to go to the market and chop up the vegetables and the fruits, do the laundry and keep up our house and whatnot, which I embraced and didn't have a problem with, compared to being a trauma surgeon going to markets a walk in the park. So I did that, but I didn't want to take her to all of those things. I had a couple of very entertaining episodes early on when I took her to the market, and we were going up and down the aisles, and she was filling the basket with things that we don't buy, we don't eat, we don't need, but, you know, she decided we needed six cans of some obscure soup and, you know, things of that sort. So at some point I decided she needed to stay home when when I went to the market, but over time, before she got really impaired, you know, I watched her. I did the laundry with her, so I would learn how to do the laundry. And I watched her make some spaghetti sauce, so I learned how to make some, some of the home recipes that I still use today. So even in her disease, she was helpful on our dual journey forward.

Barbara Hament: 18:38

So those long term things she had been doing for so many years she remembered how to do Yeah, she

Dr. Donald Wiss: 18:43

could still pop in some things, but she might do a little laundry and forget to put the detergent in. So, you know, she still needed observation. But even to this day, if you do it at the memory care where she lives when they take out things from the dryer, and she'll help fold some towels, or, you know, put some two socks together, and that kind of thing that you know she she still has that muscle memory for that she still enjoys doing. And I try to encourage the caregivers let her do things because that that's there's no harm in that. If you know you have a mismatched sock, it's not the end of the world.

Barbara Hament: 19:17

Absolutely, absolutely. It gives her sense of purpose, gives her something to do. Oh, absolutely, yeah, agreed. So, so now at this point, you've hired a little bit of help so that you can run and do errands yourself. And is she taking more kindly to those caregivers or not so much.

Dr. Donald Wiss: 19:37

So initially, I had a long term healthcare policy, and I utilized it, but the long term care required that I go through an agency, and I had to use an agency, licensed person, and a series of people came that were so inappropriate. They were elderly. They were used to kind of watching an elderly person. They were there. Mostly for safety, and make sure that they had a meal prepared. And Deborah, at the time, was in her 60s, and could we would take a mile or two walk every day. And when I said, Why don't you take a walk, they looked at me like I'd asked them to run the marathon. So eventually it stopped. I stopped it. And my son was dating a gal who was working part time in kind of a coaching job in a mental health clinic. And they were quite serious, and I had gotten to know her, and I offered her to work two half days a week, which she did, and then through another long time friend who had been in the catering business, but now was unemployed because of covid. They stopped catering. I met her one day at a park. We walked around, and I told her, how would you like to do this? And she was originally from Sweden, and we all used to call her Swedish Susie, even though she's been here for 30 years and speaks better English than I do, she was fantastic. She took Deborah out. They walked up and down Montana. They went and fed the squirrels. They went to the beach. They did everything. She says, I'm not sitting at home. And, you know, they both had their own car. I can honestly say she's the only person that doesn't have my last name that I gave a credit card to because she worked for me for two years, for us, and I said, you guys want to get lunch. She was the most honest, thoughtful, kind person, and I'm eternally grateful for her. And the gal my son was dating became his wife, so it became our daughter in law. So she got to know her future mother in law really well. So the caregiving part of it was good, but they could only work part time, so they used to work from nine to three, about four days a week. So after three for the rest of the day and all weekends, was my responsibility.

Barbara Hament: 21:49

And how were those was she sundowning at all during the afternoons? How was that for you wouldn't call

Dr. Donald Wiss: 21:54

it classic sundowning. She just didn't have a predictable lifestyle. You know, there were days where she was calm, but eventually we couldn't watch TV because she couldn't follow, you know, a TV show or a movie, the plot would be too intricate, or if they switched characters, or they were shooting a scene in the dark or the night, and then she'd get up and start wandering around the house. So one of the biggest things that we used to do was to listen to music. And we've listened to music all our lives together, and that still resonated deeply with her at a big collection. And we used to watch videos that I would, you know, stream onto the TV and watch her favorite artists, and Bob Dylan and Carole King. And, you know, for 22 years, we had season tickets at Hollywood, so that worked for a long time. But even that began to get restless and get restless and get restless. So you run out of things to do.

Barbara Hament: 22:49

You run out of things to do. You do, yeah, is that when you started to look into adult daycare, the opica program, or what? Yeah.

Dr. Donald Wiss: 22:59

So while I still had the two daycare givers, I had heard of opica, and I enrolled her there, and the Swedish woman, Swedish Susie, would go and drop her off for me so that I could do errands and whatnot. Because, you know, I had basically put my life on hold for a couple of years managing her care. So she went there, and she was at a pika for about six months. The first three months was worse than root canal without anesthesia. She didn't want to get out of the car, she didn't want to go in, and when she got in, she was fearful and frightened. And the caregivers at opica, particularly Sarah, you know, really had to coax her in, you know, for the first weeks, I literally had to stay in the back room, you know, and she turned back and I would wave and, you know, eventually it got better, but it was very difficult, very difficult. Some people get there and they're happy there's music and other people and dancing and arts and crafts. She just had a hard time embracing that.

Barbara Hament: 24:04

I think your story is probably more the norm. You know, people have a hard time embracing change, especially with dementia. Most people just want to stay home in their familiar environment. Yes, so. But you stuck with it, it sounds like and she started to get used to it. At some point she

Dr. Donald Wiss: 24:23

got used to it more. But you know, her disease inexorably progressed, as most neurodegenerative diseases do, so millimeter by millimeter, week and month after month, her cognitive skill level went down, and my two siblings and my two adult sons, in the kindest and most thoughtful way, began to say to me, Dad, you're wonderful. You're the most incredible person. You're taking care of, mom, but you're entitled to a life you do not have to you sacrifice. You retired early. You. Don't have to be Mother Teresa, you know, it's okay. And I thought about that for quite a long time, and and I agreed that that at some point I had to have a life. I was this incredibly busy, productive individual that traveled the world. I lectured, I was spoke, I did everything, and that's when I made the fateful decision to place her into residential memory

Barbara Hament: 25:29

care. How did that go?

Dr. Donald Wiss: 25:31

It went shockingly bad. So I did like I usually do, I did my homework, I went online, I visited multiple places, and ultimately I placed her into a, you know, a large care facility not too far away that had about 100 beds, and they were, you know, divided by three different levels of care. And she had an assessment, and she went there, and she was in their quote, highest level of cognitive care. I mean, she was still very impaired, but she didn't do well there. I mean, she didn't want to come out of her room, and the place was just so big that it wasn't personalized care. They had different caregivers on different days, and because she was young and active, she could walk easily. You know, no one would help her cut up her meal, and then it would get cold and the chicken would be dry. And she ended up staying there for a year. She lost 22 pounds. And as I've said, I don't think it was a bad place. I think it was a bad fit. It just didn't work for dozens and dozens of other residents. It worked, and that's when I realized that, you know, we had to make a move. I had to make a move. And during my initial search, before I had placed her in the first institution, I had toured some smaller, six bed residential memory care units, and I I liked the ones that were run by Michael goodbye, and he'd had three and now four, six bed units, and they were all in West LA and they were all close to home, and the caregivers were stable, and the people that ran it embraced a lot of the qualities that I thought were essential in helping Deborah with Her unique personality, her cognitive status, her fears and whatnot, and I moved her there about two years ago, and because it's just a mile away, I can visit her. I visit her virtually every day for about an hour and a half or two hours, and we take a walk. We hold hands. It's my ability to maintain some humanity and touch, and I also do it because the streets are uneven and I don't want her to trip. And a couple times I've tripped, and because we were holding hands, she prevented me from having a fall. But we do that virtually every day, unless it's 90 degrees and it's unsafe to walk. So it's worked out pretty well. It's worked out pretty well, much better than the first place.

Barbara Hament: 28:04

It sounds like it, yeah, and you're right. It's not the place, it's the fit. So you you had to try it, right? I mean, most people try bigger places with with structured programs, you did exactly what anyone would have recommended. Deborah was younger, so you figured, you know, she could probably participate. She was at the sort of maybe middle stages of her disease, she could participate in some of the, you know, all those activities that they have on the program. And it became clear over a year that it was not the right fit.

Dr. Donald Wiss: 28:35

So right, and I think for a lot of people, they seem to persevere. I mean, I had multiple meetings with the leadership at the initial place and express my concerns and a variety of things, and they and they did, try to work hard. It just it the environment wasn't the right fit.

Barbara Hament: 28:52

Yeah, and that's so often the case. As people become more impaired and need more help, they need more individualized help, right? So going to a smaller place, and we're fortunate to have these smaller places in Los Angeles, not every city has these.

Dr. Donald Wiss: 29:07

I'm not aware. I don't know about the dementia facilities outside of the greater Los Angeles area. I can say I'm pretty comfortable and the landscape I live in, but I couldn't tell you how it is in Denver or Minneapolis. Yeah.

Barbara Hament: 29:20

I mean, just from my experience, I can tell you that in other cities, they don't have these small homes that have been converted into boarding cares or built, you know, as a small board and care. So we're really, we're fortunate to have that level here, because you're right. That is oftentimes what most people need. They need more help. And if it's whether you're going to hire additional assistance at a big place, or just move to a small place. Sort of makes sense, right? To move to a small place,

Dr. Donald Wiss: 29:49

it feels much more like home. I mean, they make scrambled eggs in the morning and it comes hot and the toast is good, and you're not hungry. She'll they'll pop in a waffle, and I

Barbara Hament: 29:59

she could want. Wander into the kitchen and feel like her kitchen. Yeah, yeah, yeah. I mean, they would keep an eye

Dr. Donald Wiss: 30:05

so she didn't get too close to something on the stove that was ongoing. But you know, it is small, and six bed residential units have, the single drawback is they don't have the size of the facility and the deep resources to have multiple activities during the day. So usually, three or four days a week, someone will come and play the piano or strum the guitar or sing or, you know, once or twice a month they'll have somebody come and do some exercise or some arts and crafts. But it's certainly not like the larger facilities that have, you know, two and three activities in the morning and a couple in the afternoon, etc. So there are some trade offs, but Deborah wasn't using them in the larger facility. And even here, she kind of comes and goes, and when they're doing things, she'll sit for a while and go to her room and and then kind of come back that that's just her behavior.

Barbara Hament: 30:53

Yeah, it sounds like it. And that's all Okay, right? Go into her room and come back out. All good. So in the book, I just wanted to comment on this line that you had written. And I think as a physician, certainly as a surgeon, like you're you're used to people coming in sort of broken. I'm using that term, but you know, and as the surgeon, you put them back together, right? Like that was correct. You fixed them. And in the book, there's this powerful line that you said, it took a long time until I was able to accept that dementia cannot be defeated. And you talk about, as a physician and a surgeon, like how you're used to, you know, kind of being the one who fixes things and dementia cannot be fixed.

Dr. Donald Wiss: 31:42

No, it's very different. I mean, I think my training to become a physician and surgeon was greatly helpful and made me less fearful about treating patients in general, and my wife specifically. I think for the lay person, it's a much more daunting and challenging task where I'd spent 40 years, when you're a physician in virtually any specialty, you, by definition, are a caregiver. So I had 40 years of caregiving, and I was a hands on father. I changed diapers and, you know, so the things that I ended up doing for my wife, in the beginning, she wouldn't take a shower. When she moved into residential care, she refused to take a shower. And the only way I could take a shower is I got there, I undressed myself, undressed her, and we took a shower together for the first three months. Otherwise, they were going to need three people to hold her down and get her into a shower, and that just wasn't going to work. So you learn these different strategies, but it makes it a little easier, but it's difficult. And the reason is difficult is because your loved one before your eyes is losing their personality and their humanity and their dignity, and they're being hollowed out from the inside, and watching it slowly evolve. Is more than death by 1000 pin pricks. I mean, it is so difficult. And the paradoxical thing for me is that, you know, most of the people in the residential cares they're coming to are older. They're in their 70s, 80s, 90s. My wife developed disease in her 60s and was in residential care. You know, by the time she she was in her late 60s, by the time she was in residential care, I mean, most people are 1215, years her senior, so people coming to visit her, seeing Mom and Dad or Grandma and Grandpa, they're not coming to see their spouse. It really is a different experience at that level. Because I think we all know you don't live forever when somebody's in there and they're 89 and they have issues. We know that that's the circle of life, but you're not as prepared when they're in their 60s and 70s for that same circle that doesn't respect age.

Barbara Hament: 33:53

You're right. It just feels she's younger than everyone there. Feels premature, like feels like her life has been cut off, right? Feels like you're here. You retire, and you think, oh, maybe, thank goodness you had traveled the world during your career, because it certainly wasn't going to happen after you retired.

Dr. Donald Wiss: 34:12

Absolutely, absolutely. You know, the other paradoxical thing, which isn't really relevant to her disease, but it's paradoxical in the story is that my wife was a PhD clinical psychologist. So here she was, even though she wasn't a dementia care person, she she worked in a different field of psychology, more, you know, couples therapy and people just had adjustment and other problems. But here was this person with a trained mind, the PhD, and now watching her basically lose her mind was it was a was not just sticking in the knife, but it was really turning it. It was off. There's so many things that I think. What I would offer your viewers is that for most of us, myself included, you know, early on in her disease. I really was disappointed, and I was deeply frustrated, and I was angry about our aborted expectations. I'd planned carefully for our retirement, and now this was gone and for a year or two. I mean, I felt absolutely helpless. I felt helpless. I mean, here I am, this trained doctor, and I doing everything I can, and yet I can't manage it, steer it, control it, affect the outcome. And I just said, How can life be so unfair? And I think virtually all of us that are in the caregiving side of that go through some form of this anger, resentment, etc, etc, etc. And then I came to the realization that this was going to eat me alive if I stayed on this path. And I've always been an outdoor person and a walker all my life, and since retirement, I to this day, I take a three or four mile walk in the morning almost every day, and then a second short walk with my wife in the afternoon. But during those times, I had opportunities for some really deep introspection, self analysis. You know, that's where I basically, I wrote the book in my head before I wrote it on paper on my walks, but I came to the realization that I needed to accept the reality of what was actually happening. I had to accept it, no more denial, no more it's going to get better. It's not going to get fixed. And I had to display determination and resilience. And that's what I told myself over and over and over and over again, you have the determination. You have the ability to rebound and be resilient. And slowly, slowly, over many, many months, I was able to accept this awful card that I was dealt. I had to find a way to respond with purpose and intention, which

Barbara Hament: 37:05

you have. It sounds like,

Dr. Donald Wiss: 37:07

yeah, I've had some interesting discussions with people you know about religion. I have never been a religious person. I identify with the Jewish faith, but I'm much more of a cultural Jewish individual than a scholar, or what I'd call observant, but I never found that magic spark that religion would provide. People have said you haven't worked hard enough, or you haven't listened hard enough or done everything else, but I want to go on the record is saying that I do know some people that have found great comfort in their religious beliefs, and I would never denigrate it in any manner, shape or form, if it provides comfort or solace for you, I'm all in. I'm all in. I wish it happened for me, but it didn't, and I and I can live with that, as you

Barbara Hament: 37:59

say, resilience and acceptance that really helped you and to find somehow a purpose and and where Deborah is now, and, and you have, I mean, I guess showing up there almost every day and taking a walk with her is, is your purpose at this point. You don't have to change her. You don't have to shower with her.

Dr. Donald Wiss: 38:20

No, but what I do do is, when I go in there, I always have a smile on my face when I see her. I give her a big hug, I give her a kiss on the cheek, and every single day I tell her, I love you, and I'm so grateful for the time we have together. I tell her that every day in the beginning she would respond. Now she you know, there's not much of a response, but it's okay. She She hugs back, and that's good enough.

Barbara Hament: 38:49

Doesn't doesn't matter if she

Dr. Donald Wiss: 38:50

recognizes you. It's never too late to tell the people that you love, that you love them. It's never too late. You can always tell them, I love you. So if it gets through once every 10 times, then that's that's a win.

Barbara Hament: 39:04

Absolutely, that's a win. Yes, but true, yeah. And you never know what gets through, right? Never know you don't know. You don't know. So telling her you love her every day, holding her hand, going for a walk, that's a connection for you.

Dr. Donald Wiss: 39:19

It's a connection. It's a real connection. And I put on the music, and sometimes she'll get up and kind of sway and dance a little bit, and sometimes I'll get up and I'll dance with her together. And those are some precious little moments.

Barbara Hament: 39:31

So there's just one more point in the book that you bring up that I wanted to mention, because I think this is relevant for all of us, is that you, you know, we right. A lot of us make our advanced directives in life, and you know, we plan for these end of we make these end of life decisions. But you know, you say in the book, we never discussed or imagined a plan for what should happen if either of us became cognitively impaired due to injury or disease. And I. I agree. Like, we don't often talk about, you know, right where you are now, like, you probably never had a conversation with Deborah, you know, would it be okay if I start to date another person? Like, I don't know, like, we don't usually have that right conversation. When you're talking

Dr. Donald Wiss: 40:19

about it, you're kind of thinking, you know, the end will be something in the heart disease or oncological field, you'll, you'll die of something more common, and everything else. And early on, when you're thinking about these things, you don't even know that many people with dementia, so that sort of never hit the radar. It only hit it much later in life. For me, you know, as I was thinking about life and writing the book that you know, who talks about what happens if one of us gets impaired? So it was a very thoughtful and I think obviously more people should think about that, because the incidence of dementia is increasing, I mean,

Barbara Hament: 40:55

and at an earlier age, like here, right? She's not in her eight, late 80s, you guys are not in your right so

Dr. Donald Wiss: 41:04

I'm in my mid 70s. She's in early 70s. I mean, it's a, yeah, it's funny, because I've had people say I know a gal and she might be someone you'd like to meet, and I've just set up. I'm not ready, and I've never, I've never been ready, and I don't think that I could. I you never, say never, but let's put it this way. I'm not on dating sites. I'm not actively looking I suppose if I bumped through somebody at the grocery store and we started chatting while we were waiting to check out, and you know, so let's have a coffee. Who knows? But it's not a plan, not a plan, but it's something people should think about more and earlier.

Barbara Hament: 41:46

I guess something we haven't mentioned is like your support system and your friends family. You know how you kind of go about talking about the Deborah's disease with you know, with them?

Dr. Donald Wiss: 41:59

Well, it's funny because my oldest son and wife came regularly when she was at the first place and a little bit, but my oldest son just it breaks him up, and he's so uneasy and now that she can't communicate and everything else. So he's really dropped off in the visits. He still loves and adores her and would do anything, but going there to be able to converse, it is hurtful to me a little bit. I mean, I don't mean it in a bad way. I guess my younger son is kind of in the world of mental health, and he understands, and he lives closer, and they go by so and my two siblings have been incredibly, incredibly helpful and supportive. But, you know, most friends that early, early, early on, that pop by every once in a while. I mean, those have all melted away. Now, everybody says when I see them, how's Deb doing, and please give her our regards and give her a kiss and whatnot. But it ultimately the world shrinks very dramatically in a relatively modest amount of time, you know, because, in all honesty, going to visit is is not a terribly productive event or likely, but what I try to tell people is how to talk to people that have dementia. So for example, you know, I'll see somebody come in and they they've brought the grandchildren, and they'll ask their loved one with dementia, what's his name? What's his name, you know? And you're putting the person into what I call a no win situation. So I tell people it's not what you say, it's how you say it to a dementia person. So rather than say what's his name, it's I brought your grandson, Jeremy, here today to see you. He's so excited, you know, he wants to give you a hug. Is that okay? So it's, it's not what you say, it's how you say it. And in a lot of dementia people, they also, you know, get confused or or get on some tangent. And I call it, it's not unique to me. I call it the pivot. So we're kind of, kind of spinning our wheels, or we're stuck somewhere. I just pivot away. So I'll just, she'll be saying something, and I'll just go, you know, it's almost time for lunch. Why don't we get let's get our shoes on so that we can do I just, we just change the topic and that people with advanced dementia live in the moment. They don't know. When I say to you, what did you have for breakfast? She has not a clue if she had, I didn't have any breakfast, and I know, of course she did. So it's you learn a kind of a new language. I wished I'd learned Spanish, but I learned, learned how to speak dementia into conversation. So I think it's important for people to kind of think of what and how you say

Barbara Hament: 44:41

it, absolutely agree, yeah, because you don't want, you don't want your grandchild to think, oh, grandma's forgotten their name, right? Forgotten who they are. So it's much easier just introducing an awkward situation. Yeah, absolutely good piece of advice, and pivoting and the world we. Call it the art of distraction, right?

Dr. Donald Wiss: 45:02

Distraction? Yeah, change the topic.

Barbara Hament: 45:04

Change the topic. Exactly. Yeah. So works very well. And how about when you say goodbye to Deborah? Is that an issue? Not anymore.

Dr. Donald Wiss: 45:15

I mean, for years, she cried and screamed and had to be restrained as I tried to leave. It was, it was, and I wrote in the book, it was some of the hardest things in the world. I'd get in the car and I would be shaking. I mean, I literally couldn't drive for a few minutes until, you know, she was hysterical. But now, as a disease has progressed, I've timed my visits. So I arrive around three, and they have dinner at five. So we take our walk and we listen to music, and then five they call her for dinner, and I get her seated to make sure she's okay, and everything is fine, and her appetite is good, and she starts eating. And I literally just slip out the door. I don't I don't say goodbye, and when she sits down, I usually give her a little kiss on top of her head and say, I'm gonna see you real soon. And you know, I say goodbye to the caregivers, and I'll see you guys tomorrow, and I leave and I haven't had an issue for quite some time.

Barbara Hament: 46:06

Oh, I'm glad this those times are over for you. So am I? Maybe that's the bittersweet of the disease progressing, and maybe the sweet of finding the right fit in terms of where she lives. So it sounds like she's much more comfortable and much happier. And you know, her disease has progressed. So in some situations, things are easier. So, you know, we didn't really talk about medication along the way, like did. She was She on any of the usual dementia medications or anything for agitation?

Dr. Donald Wiss: 46:41

She was so once they get the disease and she did have periods of volatility, she was placed on an antidepressant and an anti psychotic. She was on Paxil for depression and Seroquel or quetini pain for the agitation. Everything else. The problem for me is, is that there still is not any known specific medication treatment for dementia. These are all treating some of the side symptoms, but doctors tend to put people on medication, and then they leave them on there. And after a while, as her disease progressed, I decided she wasn't really depressed. She had dementia, and so we tapered off her antidepressants. You know, I went from two times a day to one time a day to every other day, and then I just stopped it. And did you

Barbara Hament: 47:28

see any difference? Was, well,

Dr. Donald Wiss: 47:31

I said to the main caregivers, I said, I'm going to, I'm going to taper these meds. I'm going to be asking every week, do you see any difference in her behavior? And they kept saying, No, she's, she's the same old Deb, same old person. So I did that, and then the Seroquel, which she was taking twice a day, morning and night, I said, same thing. So I tapered, taper, taper, and I got rid of the morning dose. So she's now on only one medicine for her dementia, and she takes a thyroid and a statin for cholesterol. That's all the medicine she takes. My wife led the cleanest life, she exercised, she ate organic food, she recycled, she had solar energy. I mean, she did everything right. And even though I'm a doctor, I'm still kind of medication hesitant for a lot of different things. I really believe that medications, you know, if you really need them, great, but at some point, just because you got it prescribed in 1983 doesn't mean you need to be on them for the rest of your life. And you know, if we tapered and it wasn't working, I would be the first person to say, No, we got to re Institute it. So and the Alzheimer's medications, the aricep and the amend and stuff, are used really early, early, early in the disease, and it's designed, hopefully to prevent or to slow progression of Trustees, but it's pretty unimpressive. The clinical trials really are not supportive of this in any way. I'm actually hopeful, and I hope, before I go to heaven, that AI will be able to help discover some treatment modalities that might make a dent in this terrible disease.

Barbara Hament: 49:06

I'm hopeful as well. I agree. I hope, before we go to heaven, there's some some breakthrough, yeah, in Alzheimer's. So been a

Dr. Donald Wiss: 49:16

lot of breakthroughs in cardiovascular disease and even in cancer disease, where the remissions and stents everything else have really, really, really revolutionized care. But the same for neurodegenerative diseases, the Parkinson's and the Alzheimer's, that really very, very few breakthroughs.

Barbara Hament: 49:31

And just for our listeners, I mean, you happen to be a doctor, so you can taper medications yourself, but please go consult your physician before tackling Hi, exiting your meds. Oh, good for you.

Dr. Donald Wiss: 49:44

Okay, I would not do that. I I said to him, I'd like to tapers Deborah's medication under control. Do I have your approval? And he said, Yes, don't think that, even if you're a physician, that you should act independently. He was the one that prescribed them, so I don't feel but I should be the one to stop them.

Barbara Hament: 50:00

Without permission. All right. Well, thank you so much for being here today. I am so glad we had this opportunity. I'm grateful for you to take time out. I know that you're probably going to see Deb in a bit. So thank you for being here. I really appreciate you.

Dr. Donald Wiss: 50:17

Thank you for the invitation. I enjoyed our discussion.

Unknown: 50:20

You thank you for

Barbara Hament: 50:30

joining us today on another episode of dementia discussions. If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310-362-8232, or go to dementia discussions.net. Forward, slash contact, and let me know. I would love to have you remember that you can follow dementia discussions on Apple podcasts, Spotify Google podcasts and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast, please visit me at dementia discussions.net and please share this podcast with someone you know, if you think it may help. Thanks again for listening, and I'll see you here again next time on dementia discussions. In.