Placing My Wife With Alzheimer's in Memory Care with Jay Swerdlow

They said that you're going insane. You're gonna, you're gonna have health issues. You're not doing mom any favors. My son said, you got the two storey house, and how long do you think she could stay in there? There's a physical toll of Alzheimer's as well as the mental issues. And he's absolutely right. Every time I doubt myself at all. There's Bobby saying that, that she couldn't go up and down the stairs. These days, she would have fallen, it would have been much, much worse. At least there. She's got supervision. It's one floor. And he's right. I just had 58 years of marriage. I really would like to have her here. I know she would like to be here in some way, please. But I don't think she knows it anymore.

Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net. Today, I'd like to welcome back J swerdlow. J is a support group member, the support group I co lead through the UCLA Mary s. Easton Alzheimer's Disease Research Center. And Jay has been coming for a while now. And we're always happy to see him. So without further ado, Jay, welcome to the show. It's great to have you back.

Thank you for having me back.

Oh, absolutely. So you're back to talk about Andy, your wife of many years. How many did you say

58 years old. Thank you. 65 Joy. Wow,

that is a long time. And I would imagine you'd never thought it would come to this. Tell us a little bit about Andy and kind of bring us back a little bit to when she first got diagnosed and what she was diagnosed with.

Well do and I'll start with Andy's the love of my life. We met in 1962 through a cousin of mine, married in 1965. She was a schoolteacher, first taught second grade and liked that ultimately became apparent head teacher and taught herself to teach both in Spanish and in English. She was first diagnosed with Alzheimer's in 2019. She recognized that her memory was going as did I we went to see first our internist who referred us to a neurologist and the subsequent diagnosis of Alzheimer's. It's been a journey that I could not have made without the support of my family, my two boys, my two wonderful daughter laws. As the disease progressed, she became very upset with me, and being here at home, felt I was keeping her against her will, at times wanted to call the police. It was a very difficult situation that ultimately led to a very difficult decision again, immensely helped by my sons and daughter in laws to place her in a memory care community. I kept her home as long as I could, I never wanted her to leave. But it became my sanity and keeping my own health and for her well being. So and after she turned 80 and February of last year, we moved her to Silverado.

I do remember in support group, he was saying that she repeatedly asked to go see her parents. And that was kind of a daily question for you or a daily desire. And you're

absolutely correct. Among her primary delusions was wanting to go home to her parents. Her parents died. Father died 50 years ago and her mother died 30 years ago, but she was constantly wanting to go home to a house that was sold 50 years ago as well when her mother remarried. So yes, that was a constant theme. And again, though she knew me in some ways, particularly with the sundown effect in the afternoon and evenings. It got very difficult to keep her he or she just she would want to drive and she wasn't allowed to drive. Obviously when you're diagnosed with Alzheimer's, the doctors are obligated to report that to DMV, the DMV did suspend your license, which she never accepted either as reality. And that was another issue I had to hide had the car keys of people from attempting to drive. So that all led to that ultimate decision to overdraw memory care community.

So really none of the techniques like keeping the lights on or telling her that he would take her tomorrow to see her parents or any of those types of reassuring her, comforting her. Did any of those techniques work for a while?

The work for me, I made every mistake in the book initially, not before I joined the support group, which by the way has been immensely helpful as well. I would try and deal with the questions and answer them. Honestly, that appearance had passed away that she had Jonas, none of that work well at all. Ultimately, I learned to try and deflect and even that wasn't working here at home, it came to a point where she would refuse to go up to bed, waiting for somebody to pick her up at night. And when she would go up, she wanted me out of the house. And I would have to stay downstairs till she would at some point fall asleep. And then I could go up and sleep in another bedroom. It was it was an impossible situation with her here at home. And though I constantly deal with it, and I visit three times a week, I know I'm much better off with her at the memory care community and I truly believe she's better off as well. But it's a challenge. I visit regularly. I take her out, but when I take her out, as we drive back, she wants to know why we're going there. And not to her mother's house. It's a lot less traumatic than it was when she's home but it's still difficult to bring her back to Silverado. Though ultimately, I can walk around and turn her over to staff if you for lack of a better term, and then I'm able to leave recently because she was having so many delusions in the mornings. She was actually getting up in the mornings putting all her clothes in plastic bags, and waiting for somebody to pick her up and take her at various times. She said to her mother's house to her grandmother's house to her boyfriend's house which is me. I talked to my favorite doctor which is my daughter in law. And she recommended that we consider Seroquel, which was confirmed by our internist. So she has been on Seroquel now for a little over a week. And it does seem to have had a little bit of a positive effect as far as the delusions. According to our Silverado contacts, Melissa dolloff Manager, she hasn't been packing the last couple of days, which is a positive sign. So it's an insidious disease that continues to progress. But I'm convinced she is better off at Silverado. She does participate in many of the activities there and they have quite a few. She still recognizes me when I get there. Not always as her husband. But as somebody she knows, well, a boyfriend, sometimes a husband, sometimes shown introduce me to her fellow residents as her boyfriend, sometimes as her husband. So it's an ongoing journey. I'm not sure what else to say other than I, I'm torn between I want to visit her every day. And I want her to recognize me and at the same time. I worry that as it progresses, she will not know me anymore. And in some ways that might be better for her. If not for me, that's kind of where the journey is at this point, Barbara. Again, the support group. I've been in it, I think close to three years over two years. Anyway, and it's terrific. Thanks to you and Monica and the other participants. We do support each other and I would strongly strongly recommend to anybody dealing with this kind of issue with a loved one that they do consider some kind of support group it's it's invaluable.

What did you tell Andy when you were moving at a Silverado?

Oh, that was a very difficult thing. We decided, my son and I and talking to the Silverado person at the time to not say anything other than to move around. We took her to lunch my son and I had a nearby restaurant. And then it was supposed to was pre planned that we would come in and and off end and and then the recommendation I stay away for as long as I could to get her acclimated they botched Did Silverado. And they've been very good. They're not perfect, but they've been very good. But the handoff did not go smoothly. And it was very difficult the first several weeks even though I waited when I went back, she was very agitated, wanted out in the worst way. Fortunately, that calmed down. I mean, it's been over nine months now that she'd been there. So it's considerably better than the initial handoff. It was very difficult on me, frankly, to tore me apart. I mean, we had always talked, after 58 years of marriage and knowing we're over 60, we never wanted to part ever want to leave the house. She loves this house, she designed it we added on. One of the saddest parts of this one I do dwell on it, which I try not to, is I know I cannot bring her back. Here, it would just trigger too many things. Too many people have told me that we want to take her out. But don't bring her back to the house that will trigger too many things and make it too difficult. So we do have lots of family affairs that I take her to if they're scheduled early enough in the day, but they're at my son's house, or a restaurant. But but not here at the house.

And he have trouble bringing her back to Silverado.

Yes, to some degree, although that it's getting better. And being we drive up. She's reluctant at first. But now she'll generally get out easily and walk in with me. And as long as I can find somebody comfortably there. Either. She's on what's called the loft level, the third floor, we go up there, and then I can duck out. When I visit. I am now regular. I'm very good at lying. That works perfectly. You cannot worry about telling fibs or lies. So when I'm ready to leave, I tell her I have a doctor's appointment. I tell her I have an errand to run. What will you be back in time for dinner? I said I doubt it. But I'll be back before you know it. And that usually works. So it's become easier to leave. And it's amazing how easy I am finding it to lie.

That's counterintuitive.

It sounds flippant. It isn't meant to be flippant. But it works. Because if I were to tell her that she's got an illness called outsiders and I, she has to stay here and I can't stay with her. That would never work in a million years. I know that. So I find a way to gracefully duck out.

Absolutely. And you're doing the right thing. Because she would get agitated. She would not understand all that she wouldn't be able to put it all together. I'm sure in her mind, she's fine. And she should be going,

let me know then when she is agitated and I have to walk out. She'll actually slap at me and that kind of thing. Why are you leaving? Why are you going and they tell her I have to leave for an errand or whatever. Most times it works. But sometimes I have to leave in knowing that she's agitated, knowing she'll forget about it. Within minutes after I leave, that happens every time. And that's outside. But you know, I have no memory. So it is difficult on me in the moment. But I've come to realize that from Andy's perspective, nothing sticks in our mind for very long. So it sets your mind. And I'm very comfortable that we made the right choice of memory care communities. My son and daughter in law looked at six with me. And we felt Silverado had the most welcoming atmosphere. It's the building itself as a converted Hotel. So it has a much more open feeling than some of the others were looked at that were more vertical and less open space. Not that this has a lot of open space. But it does have a small front garden, some other open areas.

Do you think of you and send that to her? I have to go. I don't know on a business trip or I do away and you're going to be staying at this hotel. Do you think I would have gotten overwhelmed with her?

I don't know. I mean, I try and relive the awkwardness of the handoff when we first moved to there. We thought about that. They may have even come up and it was that I had to leave for a while but I just know it did not go smoothly when we are over. But That's ancient history at this point.

Right. Right. And I think that's most people's fear that day is

just Yeah, I don't know that way when you do decide that your loved one has to go into a memory care community can no longer be with you. Very difficult for me. I'm sure I'm not unique in that feeling. My kids had been asking me to do this months before I'd It said that you're going insane. You're gonna you're gonna have health issues. You're not doing mom any favors. My son said, you got the two storey house. And how long do you think she could stay in there? Because there's a physical toll of Alzheimer's as well as the mental issues. And he's absolutely right. Every time I doubt myself at all. There's Bobby's saying that, that she couldn't go up and down the stairs. These days, she would have fallen, it would have been much, much worse. At least there. She's got supervision. It's one floor. And he's right. He's like, I just, it's 58 years of marriage. I really would like to have her here. I know she would like to be here in some ways, but I don't think she knows it anymore. I think she just want when she has her. My doing whatever it's doing. It's more about her youth and going back to her mother.

I absolutely great. I absolutely great. I think she'd be looking for her parents house.

Yeah, I You're right, Barbara. Sure. You're absolutely right. And many times, Melissa, the loft managers. She thinks he's at UCLA in a class when she's in the activities. So she's definitely somewhere. She's not 80 years old in her mind, at all. And that was almost kind of a funny thing, because her lady friends took her out for her 80th birthday. And she couldn't understand what they were talking about. They gave her a balloon happy ADF I'm not eating.

She said that. I'm not Oh, yeah, absolutely.

Absolutely. It's such a, as I said, insidious disease. We'll talk about our grandchildren, the trips we've taken over the last 40 or 50 years. And she loves for me to recount the trips. But at the same time, she can't conceive that she's the age that I tell her she is what I've stopped doing. Because I've learned, it makes no sense to say, if we have grandchildren and our children are in their 50s Our parents can't possibly be alive. I made that mistake for too many years prior to moving on to Silverado. That's trying to sit outside this patient with the reality or truth makes no sense. Only causes you pain.

Yeah, absolutely causes them agitation and anger causes the pain. Yes, agitation

is the right word. If not anxiousness anxiety, because they can't comprehend what I'm saying.

That makes perfect sense, right? If the hallmark of Alzheimer's is losing your short term memory, and her long term memory is intact. So she's back? Yeah, you're right. She's back as a UCLA student are back in her parents house or I don't even know if she ever was a UCLA student, but it doesn't matter. She's back in

when she was she was a UCLA student, and it doesn't matter. But you're right. I mean, she's definitely back in her youth somewhere, Barbara, and I think she's happy there. At least I convinced myself She's happier there than agitated, that's for sure. Absolutely. Absolutely. It's a journey. And I can see the physical deterioration as well. She was always so so fastidious about and concerned about her weight, and she's put on a tremendous amount of weight, and not just a Silverado that was here before I moved her in. And when I do take her out, and we take walks, she gets tired very easily now. She used to walk to three miles a day with her lady friends with me in the neighborhood for that matter. She can barely walk a block now without getting very tired. So there's no question that Alzheimer's takes a physical toll on the person as well as a mental one.

And how often are you going up there to visit her three times

a week? I go Monday, Wednesday and Friday. I'm into a routine. I usually go in the afternoons. Sometimes on Wednesdays I go on the morning. Friday, we have a very good time because they have a Friday Happy Hour Silverado non alcoholic, but they have a wonderful entertainer. man named Stefan who sings and plays the keyboard and we have a great interchange with him. Every now and then we'll even get up and dance a few steps. And this guy is I can't say enough about him. He is just treats the ladies and it's 90% ladies in the loft area of Silverado was such dignity and respect. It's really impressive. So I'm over there. And sometimes my kids say you really want to go that often. Nice. Yeah. As long as she knows me, I want to go that off. And that works for me now that I can get out after an hour or two gracefully, and it's becoming easier and easier to do that most times anyway. I feel I owe that.

And on the days that you don't go, are you thinking about her? Are you feeling guilty that you're not there? Yeah,

to some degree, though, I keep activated. I'm a terrible golfer. But I play a lot. And I'm a terrible tennis player, but I'm still playing tennis. And those physical activities helped me. And I don't really give it a lot of thought, although I do text with the loft manager fairly often, just because it's me. I just kind of want to know how she's doing. We're gonna tell you I was an am a one woman, man. People say to me, so many people develop lives when they know their loved ones are in this condition. Not me. I mean, I don't feel like I want to travel. Because I want to visit regularly. And I've got my friendships, I used to tease Andy that she had lifelong friends and still does. And she has a lot of visitors besides me, which I think is terrific. I don't have a lot of close friends. But I'm happy with my own company. And I do enjoy visiting, even though we can't, we don't have a substantive conversation. It's usually I'll start by reminding her some of the trips we took over the years. She loves to hear about him. The fact that we do it over and over. I guess I've gotten numb to that stuff. It doesn't bother me, either. So

do you have picture books from any of those trips I

saw are some on the phone, particularly our trip to India. She I don't know why she loves hearing about the cremations in Varanasi along the Ganges River. Oh, I remember that. And then our trip to Africa with the animals. Because she didn't want to go, I had to convince her I wanted to see the animals in their true habitat. And she turned out loving that trip. So that's he remember, he was a history major at UCLA. And she loved visiting the museums and all that. So we were in Europe, probably, I don't know, 1015 times over 40 years, whenever climbed the Great Wall of China, went to the cherry Boston was in Japan. So I remind her that she said we were everywhere in the world we wanted to go. I said you never wanted to go to Antarctica. You never wanted to land. And she wasn't a hiker. So we never went to Iceland, but just about everywhere else. We had a good life together. But I don't know how much of that she remembers. But I remember a lot of it.

Absolutely. Does she remember your son's Yes.

And my older son lives up here and he and his wife visit at least once or twice a month. My younger son when he comes up from San Diego stops by our grandchildren. We have a 20 year old and a 17 year old who live up here. No go by, she recognizes them. And then again, she doesn't tell me an hour reminder we have a children and that kind of thing. And she has a lot of lady friends that visited Silverado was terrific about setting up a private room for lunch when they do visit and they say you know they have great visits and then just say things out of left field that make no sense but my friends to all of them are very understanding and knowledgeable enough in this area that they understand what's going on. So that's great. And I know some in our support group don't have the family support and friends that that I do and I'm sorry for that because it makes a huge difference.

Absolutely. Yeah you're so fortunate

that I Am that I Am if you have to deal with this disease and this kind of support that a support group offers family friends can make a world of difference. The way you and Monica handle the support who Barbara I can't tell you how much that helps as well. Well we love having you guys are great listeners.

Thank you for that you and we love having you in group. We really do you have and here on the podcast as I know it's not easy to tell us about the struggles that you've had with Andy she like you said the love of your life and to see her like this is so tragic, devastating awful. Every time I asked for people who to come on the podcast So you're always like, Barbara Oh, come on, here you are. So I know this is, it's been a hard journey. And this is hard to talk about the times have been hard for you and for your family. But here you are sharing them with us. So I really, I appreciate AJ, and I appreciate you telling us your story.

I thank you for that. And I hope it helps others. It helps me a little to talk about the story. And as I say, she's a was and still is a wonderful woman, just not the woman that I married and fell in love with. Not her fault, not anyone's fault. It's, it is what it is, is I guess the bottom line?

Absolutely. Bottom line, and you've learned to accept things as they are.

Total aside, but I guess sort of blessings is this traumatic event going on in Israel would have affected her. I can't tell you how deeply not that we're particularly religious Jews. We're not. We like to wear like the music and the food. Like most liberal Jews would go once a year to temple for the holidays. But I I started to tell her about this because it's and they talk about the love. But you can see it's just very superficial to her. She understands that there's a war going on now in Israel, but it's not affecting her near as deeply as and it would have had she not had this disease. And that's almost a blessing for her at least.

Yeah, true. She's not feeling that sadness. Yeah.

I mean, she, Oh, it's terrible. But then five minutes later, she's forgotten about it. Right. Anyway, that has nothing to do with anything other than it's just happening right now.

That's true, I guess that is one silver lining of dementia, that she's not able to take in the horrible news that's going on. So

yeah, I think it was on Monday that I was telling her about it. And a Wednesday. What's going on with Israel? She remembered that she asked you if you remembered Israel, but she didn't remember what the issue was? She says, Is there something going on in Israel? Now? It could have been that the newspapers are delivered every day. And she likes to look at the paper because I bring it as well. So she gets one. So it could be that she I don't know what triggered it. But she did remember enough to ask me. And I said nothing good as this horrible fight between Hamas and Israel. I'll see when I go tomorrow, whether she'll ask you again or maybe I'll bring it up again. I don't know. That's the manager there. Melissa Goldman has some family in Israel, so very hard on her to

so needed even talking about it. They probably I think they

have because they do one thing about Silverado, they have I get current events. Class almost every morning and they start with yoga and exercise. And I think all that's good for the residents. I really do.

Yes, I agree. Absolutely. Tried to stimulate any memories, the apps of course, all of that is great.

It is kind of a as an aside, a funny humorous. Every time I come she introduces me. Like it's a fresh introduction to her friends. They're, you know, my husband or my boyfriend, J that kind of thing. And does everyone chuckle Yeah, I mean, I've been there Ned's nine months. So I know a lot of the ladies by first name. There's various forms of dementia and Alzheimer's. There are people that are further along than Andy that there's this one woman, Roberta, almost every time I show up, she's on the main floor wanting to leave, and they're having to try and calm her down. And that's not we're Andy's at least. And and there's others that various forms of illusion, what can I say?

I'm glad she's up on the loft. That's the care.

When and there's been a few that have progressed down grasping the wrong word, it's gotten worse. So they moved to the what's called the first level. And then the middle level of skilled nursing, which is where they really need a lot of assistance.

Oh, really? They've changed that to skilled nursing on the middle. I didn't know that. All right. Well, anything else you'd like to say that we should end with are

really appreciate you having me on. Alzheimer's is a journey for the loved ones, the caregivers and the loved ones and in my case, the husband of the wife that's suffering from it. I'm committed to staying on the journey. Not that there's an option. Well, there

is but you're you are committed to staying on the journey. You're committed to staying involved with Andy no matter what right Right. Yeah, you're staying the course.

I guess there's if there ever came a time when she just didn't know me at all, it didn't want to see me. I don't see that as part of this progression, but I don't know. I'm sure there will come a time when she knows me less. And maybe when she doesn't know me at all, it won't make sense. But my take at this point is that I'll probably keep visiting until whatever is inside. That's one of us passes away is I guess, the ultimate end result. Right? Sorry to end on such a downer.

No, that's true. And that is when you will stop seeing Yandy either when she dies, obviously when you do.

I mean, I always thought I would pass away first because I'm a three time winner against cancer. Going back to show you what kind of lady she was 1965 We're getting married. I've been diagnosed with in those days a pretty rare form of cancer was a malignant tumor on my spine. I'm 23 years old. I was operated on by a very famous violinists first cousin Yoshua. Heifetz. first cousin, Milton hyflux was a neurosurgeon. Wow, he operated on me in February of 1965. And everybody's telling me, are you crazy? You're going to go ahead with a marriage, somebody that's being up. And I had cobalt treatment, following it, because it was before chemo. And we were a little worried about our first board. Because when you have cobalt, they say not to worry. They put six feet of lead between you and them and they vacate a city block. And you are bombarded with radiation for 30 days. Fortunately, our firstborn came out just fine. Thank God. I had non Hodgkins lymphoma in 2001. And I had colon cancer surgery and heart of the pandemic in 2021, which went unbelievably well, in the midst of the pandemic went into cedars. I had DaVinci a robot surgery led by my proctologist and stage two, and they got it all. So she stayed with me through thick and thin,

thick and and so you're quite a lady, and you're quite a man really? Well, thank you. Absolutely. I know that you leave our support group to go play tennis. So you're taking care of yourself, which is really as a joke

as your brain triples on to sulfur doubles. We've got a lot of editing to do with this one, Barbara.

Well, Jane, it's great to have you back and thank you for being here and telling your story.

Thank you and I'll see you at the next support group meeting.

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