In this episode, Steve and Virginia chat with Joe Gonzalez about tips for finding the right care facility for someone living with dementia. Joe shares his experience caring for his wife, Barbara as he navigated the transition from caregiving at home to a memory care facility.
From the University of California, Irvine, this is UCI MIND’s, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias. Welcome everyone to Spotlight on Care. We're very excited about our podcast today. With me today is Virginia Naeve, my co-host, and also our special guest, Joe Gonzales, and I'll introduce him a little bit later. Our topic today is kind of investigating and choosing living arrangements outside the home. Probably one of the toughest things to do and to go through. So we hope you're going to get a lot of tips. I know Joe has a lot to share. So Virginia, why don't you share a little bit of your experience.
I'd be happy to, Steve. Well, Mom had been in her home for the better part of a year, which was a 45-minute drive to an hour from my house. So needless to say, I was still raising two kids at home and I could not just jump in the car and see if mom was taking her medications correctly, or if she was even cooking dinner. And I was beginning to worry about her safety. So I thought, Okay, I need to find a place for her. So I looked and found what I thought was perfection. I thought this place is lovely. You walk in, there's a chandelier. The tables had white tablecloths and, and the room that was available had a little stream right outside. And I thought this is lovely. So long story short, we moved mom there. Well, she was not happy. She didn't understand why she was there. I said, “Mom, you need help with living.” And she said, “Why? I'm perfectly fine.” So I thought, “Oh Boy! Okay, so she stayed two or three months. And I thought, “This isn't working. She's miserable.” So I brought her to my home, our home. And I don't have a spare bedroom. So mom's bed was the sofa. And I started looking again. And I found a place that I thought was perfection. I thought, Oh, this place is great. She's gonna love it. So my brothers again, got her furniture out of storage. And they we all went down there and set up her room like it was her room and her furniture and pictures on the wall. And I went and got her. And we stood in the lobby, and I was just about to take her to her new room. And she said, “Why would you think I would stay here?” And I said, “Mom, it's lovely. It's a great place. You're gonna love it.” And just then a woman with fairly severe dementia came up, grabbed my hand and started licking it. Mom was horrified and so was I. She said, “I'm not staying here even one night.” So I got my brothers and I said, “This isn't working. She won't stay.” So I went to the office, and I told them, “I'm super sorry, but we're gonna move everything out of mom's room and she won't stay.” I wasn't doing very well. So back to my sofa. Her stuff back in storage. One day, my sister-in-law calls me. She goes, “I found the perfect place.” I said, “I really hope you did.” And we went there. And the available room was beautiful. It had like a little living room space with a sofa and a TV and a kitchenette. And then her little separate bedroom. And I said, “Done. We're signing her up.” And we took her there and she was fine. She looked around, she saw her stuff. Maybe she was tired of my sofa. She was happy. And that is where she stayed until she passed away at the end of her Alzheimer's. So I didn't have an easy time, but it ended up well.
Well, that's a good story. That's a very good story, Virginia. Mine is a little bit similar. I'll kind of talk about the investigating part. I knew we were going to have to make this move. At some point. I was still working full time. Patty was home. You know I had full time care there but I was either going to have to go to 24-seven in order to take care of the evenings when I was traveling. So anyway, I started to look around and I thought, well, this is really a good thing. “Why don't I take her with me? And I'll take her. And you know, we'll look at these places together.” Huge mistake. I took her to the first place, and we walked around, it was terrible. And she looked around and goes, “Oh, this is interesting. This is interesting.” And as we're leaving the place, she said, “You're not going to place me in here are you?” So, I learned two lessons one, check a lot of places out and to make sure you don't take your wife or your loved one with you when you're evaluating properties. So with that, let me introduce our special guest today. Joe Gonzales. I've known Joe for a number of years. He and I've shared a lot of stories together about our wives. I was lucky enough to go to Joe's memorial service for Barbara. It was really special. Got to meet his daughters. And so it's been a really good friendship for me. Joe is going to talk about in a little bit about Barbara and then get in, we're going to get into some questions about what it's like to do this investigation. So Joe, give us a little discussion about your life with Barbara and how things.
Okay, thanks, Steve. Yeah, preparing for this brought back a lot of memories. And I did spend. Barb and I met in junior college. And, and then she always says she dumped me for another guy, and marry somebody else. And then I married somebody else as well. And then some 30 years later, we got back together again, and got married in 1997. And it was the best I mean, it's everybody should have a love, like the one that Barb and I had. It was special. And we did everything together. We had dual families. I had four children, she had three children. And we had a great life. And in 2007 she retired, and we moved to Tustin and we're living in Arcadia, my business was in Tustin. And she loved the house so much that she wanted to remodel completely inside and out. And then in the middle of that we began see things that affected the way she dealt with things. So the contractors that come back and said your wife ordered this. And then she said no, no, I didn't. And of course, I knew as a contractor because my wife was right on top of all that stuff. And I began to realize that there was issues with her. And I did call her doctor and tell him that she's got some memory issues. And he proceeded to tell her that I called him. And she was super angry about that. And things changed. All of a sudden she didn't know how to how to cook, or she'd leave the water on or the heater on. And things that were just crazy. And for me not knowing anything about the disease. I figured I better start looking around to see more about this disease and join the Alzheimer's Association. They had a couple of programs which included three sessions. I took my wife, we both went there. Barbara never admitted that she was that she had this disease. But the sessions were good. It taught you how to how to deal with it, how to answer it, how to ask questions, how to respond, how to care for her. So it went from a great relationship to one that was really, really difficult. But the Alzheimer's Association really helped me deal with with her and help her.
Well, you know, Joe, I know that this process of you know, caring for her took quite a while but there was a juncture when you had to make some decisions about having her live outside the home. What was the process of looking for alternatives that you went through?
Well, first of all, I never thought I would ever do that. Because, you know, I'm her husband, and it's by responsibly take care of her. For me to place her in a home would just be unthinkable. But when things started happening at the house where her safety was in question, then I went ahead and started to look around at various different places. And without knowing anything at all about that, I Googled memory care facilities and friends gave me information about various different places to go visit. I made a list of you know, 15 to 17 different places and started on my task of, of visiting those sites. I didn't take Barbara with me, but I did visit those sites and and after visiting the first couple of sites. I realized that I didn't like them. But I realized that the sites weren't for me. And I think that's a distinction that you have to make is that when you're looking for sites, it's not a site for you. It's a site for your loved one. And that was a big change for me because I started looking at places with a different eye. I saw one place. I was talking to earlier about one place I went to that was phenomenal. And I went in and asked about their memory care facility. “Oh that's in the back.” And you know, when I walked in the back, it was not really a facility that was good for my wife or for anybody for that matter. So yeah, going through that process was an adventure for sure.
So, when you looked at these this number of places, which is quite a long list and very thorough How did you feel about it yourself? And did you feel like there was another step that you should go through?
Well, actually not at the beginning. I mean, I went through a whole process and as a business prospect that looked at facilities and said, “Okay, this is good? Is this going to work?” And I wound up coming up with the idea that really I should deal with things that specifically dealt with just dementia because some of the facilities were, you know, had restrictions on the people with dementia. So Barbara had had caregivers, and we had an association that managed daily care for her that was still working. And so the manager of the homecare unit, I asked her if she would act as a consultant for me and look at these facilities, because I knew nothing about that I knew about the business side and how it looked. And so she asked me to just deal with those companies who dealt specifically with dementia, and nothing else. And so I gave her the list. And off she went. And she visited all the sites, in fact, added a couple of different sites, including the one I ultimately wanted to placing Barbara in. And so, yeah, now I had all these sites, and then she came back in and gave me her thoughts on the sites.
Well, what were some of the criteria that you use to evaluate these sites, Joe? You know, for us novices, what do you look for? I mean, I learned after I visited a couple of places, but I wish I had had some insight before I started.
Yeah, well, the consultant developed a questionnaire for us. And I think one of the key things we had was the fact that that they needed to have, each place had to have 24-seven nursing care, RNs and LVNs, were looking for places who would administer the medication that she was taking. We looked for the training and selection of staff. Did they drug tested to do background checks on the individuals, how much training they get before they got started? With our continual training, and then I asked about turnover and ratios of staff to residents, and how they handled agitation. And, did they have outings in a place where they could move around and feel like it's a it was open, not confined. And I created these that these questionnaires with the help of the consultant and send it out to all the people that we had, I think we narrowed down to about eight. The interesting thing is out of those eight, only about three or four of them responded. And some of the ones that responded said, “we really can't share that information with you.” Which I thought was unusual, since I'm placing my wife in there. And you're not going to tell me things of that nature. So yeah, so that's that was my next step.
Yeah, I you shared that list with me. And I was incredibly impressed. I found one of the things that you put down there was how they dealt with specific situations like what about falls? And what about, you know, the number of times that these kinds of occurred? Did you find that useful?
Some of the people said, “Look, we just don't share that information.” Most of them did. But the facility where Barbara wind up said, “Yeah, we will call you with every fall, we'll record every fall.” And, Barbara used to like to sit and watch TV sitting on the on the on the ground up against the sofa. But every time she was down, they would call me and say, “Look, we think she sat down but we're not exactly sure.” And so they did, they did a great job of letting me know about those kinds of issues.
So what was the deciding factor in your decision? What did it come down to? What made you feel? Were there any of those items on your list that became more important? Or was it just a note, something else that occurred?
Actually, though, certainly the list was important. I mean, I sent the questionnaire to all these facilities and the one I picked by time I got home I had a response. Some of the other said, “Oh, got to get back to you, got to get back to you.” But I think the feeling at the facility that I picked, it was open. They had entertainment every day. Their staff was great. They had a larger number of staff, which is which is I think important because when they get agitated redirecting was important. So if one person couldn't handle that can hand it off to somebody else. And Barbara was extremely happy there. So I think that's really it was the study was open. It didn't feel like it was she was locked in.
You were talking about Barbara's experience there. You said she was happy. Can you talk a little bit about that transition for her and then I'll ask you how the transition was for you.
We had a caregiver, and the caregiver at home, would take Barbara once or twice a week to the facility. And when I got home from work, Barbara would say, “Gosh, I went to a great place today.” And she would help there. So when she moved in there, we did the same thing. We created pictures and all things that make her room. Be like home for her. And I took her one day and she walked in and, and I left and then I couldn't go back for another 10 to 14 days. That was a suggestion. But she loved it. I mean it she was happy, she happier than she was with me at home. And she had flowers. She did work on flowers. She worked on cooking, she made the rounds, she thought she worked there. And Barbara thought she worked there. And so it was great. She actually asked the manager if she could get a raise. She was working really hard. But she would make the rounds with all the nurses. And she'd interview. In fact, at one time where she had a individual come in and was looking for the facility. And he she gave her gave the guy a tour of the facility. And then somebody said, “I work with Barbara.” And he said “Well, yeah, she's actually a resident here. So yeah, it was it was awesome for her.
That makes all the difference in the world, doesn't it? That that if you know your loved one is happy where they're at, and they're making that adjustment. I wish mine was as easy. So how was it for you, Joe?
It was the worst day of my life doing that it was aside from the fact that it felt guilt that I was incapable of taking care of my wife. I took her on a Friday the 26th of December. And I came back that next day, and we just crushed that evening. And I thought I got up the next morning to get in my car to go pick her up. I said, “Okay, what I did was wrong.” And so I remember them saying, “Look, give it 10 to 14 days.” I figured, “Well, I'll go ahead and honor that.” But it was brutal. And although the facility called me every day, twice a day, and said how she's doing what actually went to bed, how well she's doing how happy she is. And so it made me feel better. And then I went to see her. The very first time I went to see her she gave me a big hug and talked to me as if we saw each other every day. And she asked me every time I’d leave, “What time are you coming home from work?” I said, “About five to eight.” “Okay, I've got to make a really nice dinner for us tonight.” And, and that was and so it was great. She loved it, it was hard for me. But one of the things in the selection process that I didn't mention earlier is that when I'm talking about facilities that only deal in dementia, dementia has so many different stages. And I think that the facility we had had all these stages in life in life, where we're dealing with somebody with Barbara was well, so well-functioning all the way to the very time when she was at the very end. And these individuals that had staff were all trained to deal with these people at various different times. And so it was rather than just saying they're either here or there. And I mentioned nurses the other day that earlier and one of the things about nurses is that if something happened, and you didn't have nurses, you would have to call 911. And with nurses on staff, they were able to resolve issues, even the minor issues without having to call 911 or having moved out of out of the facility.
Yeah, I remember that as well. That was very comforting thing for me when something went wrong. You know, they had an opinion, they gave you advice. They called you to check to make sure you were okay with it. But I felt like okay, somebody else's is on top of things, and it made me feel very comfortable. So a little bit more on maybe this guilt thing that you felt, how deep was that? And how long did it last?
Well, it was awful. I mean, it's I even went to, it lasted a little while. I wound up, my doctor suggested I go to a psychologist which ice dead again, because of course that doesn't work. Not for me. It's not gonna work. But I did find a psychologist, I'm still seeing her to this day. So it took a while for her to say that placing her in a facility was actually the best thing for her. I was still taking care of her by doing that, because I was providing the best care for her. But it took me a while. I'm gonna say a good six months or so to get by that. But she was so happy. I mean, she recognized me untill the very end. So
Which was different than it was at home. So yeah, it was the guilt was awful. I mean, it just it took I just thought I had failed and in my in my duties as her husband.
What do you think? Why do you think some of us feel that guilt? Yeah, the word I use is control. What we're would you use?
You know, I don't know. But I'll tell I'll tell you one thing I think the men's group that I was involved in, really helped that process because we were all coming out of it was successful people running their own businesses. And we're used to fixing problems. And now when it comes down to the person that you love most, you can't fix them. And so I think it's it's a, I think that's what's most difficult, I can fix anything except to the one thing that is most important to me.
Yeah, Alzheimer's gives you that that whole sense of, “I don't know enough about the disease it's going on. And I don't feel like there's anything I can do to fix it.” And when you've done that a few times before in your life, it makes you feel like you've just totally out of control. That's how I felt.
Yeah, I think that's I think that's good.
You have any, I think you've answered this question. But do you feel like the timing was right, when you placed Barbara, or would it have been better if it was sooner?
It would have been better if it was sooner, you know. My daughter, my kids would say, “When are you going to do something about Barbara?” And I’d say, “Well, I'm waiting for a crisis.” And they said, “How many crisis do you want? You've had like six or seven of them already that are major.” And I remember going to this family facility I selected. When I sat with a manager, she's asked me, “Have you thought about when it's time for you to make the decision?” I said, “Yeah, I have thought about it.” “So what do you think?” “I'm not really sure.” And she said, “The fact that you're sitting here across from me, means you should have made that decision three or four months before.” I think she was right. I think we all wait too long. And there was a couple of issues where Barbara could have gotten hurt, just turning and walking across the street, and could have got hit by a car. And so it's just I think it becomes a I don't know if it's an ego thing or selfish thing or whatever. But you just don't want to let go. And you've got to find a place that's actually safe for her.
Yeah, that issue about giving up control yourself to somebody else. I remember Patty getting lost. And that was a turning point for me. I knew, I mean, the caregiver that it was, was filling in for me, showed up 10 minutes late I had left I figured, hey, no big deal. Bam, she was out the door. She's taking the dog for a walk. She got lost. The police found her fortunately, scared the heck out of me.
Yeah, I had the house alarmed. So every time they open the door, I would tell me what door was open. I had cameras in the house because I was still working. I could see her all the time, and it just was. But you, you turn your back and they're gone. You know, and, and they're lost, and they don't know where they are. And even though we think well, of course, you're right down the street, they don't think that they're actually lost. They don't know where they're at.
If you had to look back at your criteria, again, you know, all of those things that you put together. Is there anything that you look at now and say, “Oh, you know, that one really comes to the top now after the fact.” Anything changed in your mind?
Gosh, I was so happy with the facility, we picked that there probably isn't much. I do think that one of the things I learned is that I think the hospice process, I could have done a better job with that. I didn't realize they had hospice at the facility. I didn't realize that I could actually get hospice, outside hospice and interview those the same way to look for facilities. I think that would have helped, not that they were not that they weren't, didn't do a good job with her. But it just felt like there might have been other things with that, that might have worked better.
That's a good comment. I was lucky enough to interview a few places for hospice, and I ended up choosing an outside firm. And I felt really good about it. Sometimes hospice is short, and sometimes it's not so short with memory problems. Yeah. How long was Barbara's hospice experience?
A year and a half.
A year and a half? How did you feel about that?
Unknown Speaker 24:09
I actually felt that they were milking Medicare. Because I just there. It just didn't seem like anything was helping. I mean, it just did come in and give her a shower or two or three days and did those kinds of things. But I didn't see that what was most helpful for me was a facility's monthly plan of what they are, however, was being cared for. So yeah, I wasn't I wasn't thrilled with that with hospice.
You talk about the facility's monthly plan. You just brought that up what kind of interaction Did you have with the facility about what was going on with Barbara?
They had a monthly meeting with a plan with all of their staff, specifically for Barbara and I was invited to those. After they met with a plan and we discussed the plan and where they thought she was and what they thought the next steps were. And they asked for my advice and those kinds of things, or my approval, not necessarily advice. And, so it was every month. So it was great for me to see that progression of. I never realized that Barbara was going to deteriorate the way she did. I just didn't know enough about that. I saw other people that were destroyed but I thought, well, that's not going to be Barb. But it was. So I think the plan was great for them to keep me posted on what, what our progress was.
So that's another good tip. If you're looking at communities, find out what the reporting system is find out what the interaction is, after your loved one enters a facility in a community, how much give and take you're going to have what kind of advice and counsel you're going to get. I know, that was one of the things that frustrated me, I also had interaction with them. But I felt like there wasn't enough kind of like, advice for me, you know, it was like, “What am I going to go through? What's the experience going be like for me?” And no, granted, that wasn't what we were paying them for. But in retrospect, I know that would have helped my situation a great deal. And fortunately, I was in the same group that Joe was with a bunch of guys who helped me get through it.
When you're talking about that. You know, Barbara had her own kids. And we had some complications with that. But, but really, what helped me it was keeping in mind that Barbara was the most important, she was the most important. And when we find a facility, we found it at a place that was best for Barb, and the rest of us would have just a second up and just figure out a way to get to get to her. But it's whenever you have any noise from any detractors who are all trying to help, you got to think Barbara is the most important thing, probably the most, and that kind of keeps you keeps you focused. It wasn't until I until I joined the men's group that I was, Steve, you and I were in that really, I got help for me. So I tried a lot of support groups. But you know, there's, it's tough to find support groups that are the same as you they have, they're dealing with spouses. And I think our group was really good for that at that point.
Unknown Speaker 27:10
I agree. Well, let's kind of turn ourselves here to kind of like, you know, looking back, thank you, you did a wonderful job of taking us through the interactions that you had the process that you took the thoroughness that you obviously did some of the things to look for, which was great. And also some of the, you know, some of the things you went through yourself, if you had to look back on just being a caregiver yourself in totality. Are there any things you would share in terms of insights about that?
Yeah, first of all, most people that I know, don't know anything about the disease. So the first thing is get yourself armed with as much knowledge as you can about the disease. I thought the Alzheimer's Association was phenomenal in that for that. Because they said things like don't ask her, “God, don't you remember yesterday we were here?” Because she doesn't remember that. And just to realize that when she gets agitated, you just kind of kind of settle back and, and let it let her go through the process and come back. So I think that that the Alzheimer's Association had great insight. I think find yourself a support group. And talk to people who have been through that process. Support groups are just phenomenal. Ours was the best. I mean, I went to a number. Ours was great. And then talk to everybody you can talk to you about it. The more information you get, the better the better decisions you can make. Especially when you're talking about a topic that first of all, you're not a medical person. And secondly, you don't nothing about the disease. And you got to make decisions for this person who can't make decisions on their own.
How did you feel being a primary caregiver?
I never really got angry.
You seem pretty calm. I've always known you to be pretty calm. But maybe there's another side to you.
I think the thing the interesting thing was I was still working. And when I placed Barbara after about three or four months, I placed Barbara the people at work said, “Welcome back.” I said, “I'm here every day.” He said, “Yeah, you're not really here every day.” So I think it's just I had to keep focused on the fact that when she's when she's afraid of something or when she's agitated about something, it's because it's really real in her mind and see just, if you just ride it out, you know, it's, I mean, I get home from work, so you'd have her clothes packed. Then she said, “I'm ready to go home.” Or she'd say, “I got to go home” and I said, “Why honey, we can't go home now it's too late.” She says, “I can't stay here. My parents won't let me spend the night with you.” So here I had a say, “Well, I just I just talked to your mom and she said it was okay.” “I bet my dad didn't say it was okay.” So yeah, I know times where I walked into the bedroom and started getting changed and she’d say, “Dad.” I mean, you guys get dressed in front of me.” I said, “Oh, no, no, I'm going to be in a room.” And then I go the other room in an hour so she’d come in and say, “what are you doing in here?” So I said, “Oh, I just got here, I got lost.”
There's a level of patience that you had to acquire is a is another prerequisite for us all to remember. And I think you also talked about something really critical, this idea of focus on her, I know that, you know, we tend to internalize and our ego tends to take over sometimes, but the idea of remembering your job is to care for your loved one. And that's the most important thing, if you can get that in your head, a process becomes.
Nothing else is important, the noise is not important. It's just all about her. And, you know, with two families and two daughters, I had a lot of suggestions from her daughters about things. And so but you know, and I checked them all out that Barbara was the most important thing.
That's a great place to end, Joe. We all need to be diligent in dealing with a loved one, from the beginning of the disease all the way through their passing. It's a it's a journey we all talk about as a journey. Well Joe, I want to thank you again so much for taking your time and coming and participating in our podcast today. Your insights were spectacular. Virginia, anything you'd like to add?
Thank you, Joe. I just sat here shaking my head yes, the whole time, even though it was your spouse. And it was my mother that I was dealing with. So many of the things are very, very similar. And I think you did a great job.
Thanks for including me in this. It's really the place I want to be an ability to help other people who if this helps. I'm happy about it.
I guarantee that people will really love what you had to say, Joe.
So thank you, everybody, for listening to this podcast. Please sign up, find out about new podcasts that are coming in the future. Thanks again for your listening, we really appreciate it.
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
Transcribed by https://otter.ai