Investigating In-Home Care with Mark Wilson

In this episode,  Virginia Naeve and Steve O'Leary interview retired HR executive Mark Wilson, who cared for his mother with Alzheimer's disease, about in-home caregiving. He gives the listeners his expert tips on finding the right caregiving team  to support in-home care.  What would like to hear about next? Email us at mwitbrac@uci.edu.

Transcript

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Steve  0:06  
From the University of California, Irvine, this is UCI MIND’s, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia  0:24  
Hello, and welcome to Spotlight on Care. I'm Virginia Naeve and I'm here with my co-host, Steve O'Leary. Today's topic on Alzheimer's caregiving is, In home caregiving. We are going to talk about what to do and how to find help. If you're caretaking your loved one at home. Before I introduce our guest, Steve, how long did you keep your wife Patty at home? And how and why did you make the decision to place her in a community? What things did you consider?

Steve  0:59  
Well, Virginia, yeah, I think that maybe a little insight on the process of finding in home care, which is certainly in a challenging time. I got some good advice from some other people that the biggest hurdle was getting them to accept it. And it turned out after interviewing a few different companies, one of the people I spoke to said, “well, we're not going to just show up, we're going to come there and have a, get acquainted meeting”. And I think that helped a great deal with Patty's acceptance, not only of the idea, but also of the person who was going to be the caregiver at home. So that worked. The decision about moving her from in home care to community care, was really a practical decision and a decision about her care. I just, I was still working at the time, I was dealing with my own disease that I had been diagnosed with pretty severe prostate cancer. So I just felt like I couldn't provide the level of care that I was providing before. And when I looked around, I saw places with music and entertainment and places that our dog could go with her. And it was just like, Well, I think they can do a better job not an easy decision, the hardest decision I've ever made.

Virginia  2:30  
Yes, it's a tough decision. But it you know, it's personal for everybody. We all have different circumstances. My mom's home was almost an hour away from my home. And I really felt like mom was at the point where she was unsafe. And I was too far away to keep a good eye on her. I was still raising two kids and driving around like a maniac, like moms do. And so long story short, I placed her in assisted living near my home and that worked for us. Whether or not you keep your loved one in their home as a personal and it is a tough decision. 

Our guest today is Mark Wilson, early on in his mom's progression with dementia, he decided that there must be a way to keep his mom in her home. That is what she wanted. That is not an easy decision. But he was determined to figure it out. Welcome, Mark. We're glad that you're here.

Mark  3:33  

Thank you, Virginia. Steve. Glad to be here. 

Steve 3:35

Great to have you here. 

Mark  3:36 

Thank you so much. 

Virginia  3:38 

First of all, before we get into all the details, tell us a little bit about your mom. What was she like before?

Mark  3:44  
She Yes, no. She was amazing. I mean, she was she had a great personality. It was fun, smart. She was a teacher kindergarten teacher forever. And an amazing mom. I mean, it's tell you a quick story about our kindergarten after she retired before dementia set in, she would be driving around and walking around with us and going shopping and people would come out of the woodwork to say, “Mrs. Wilson and just thank her for taking care of her kids and their kids are successful because of you”. I'd be beaming, you know, from ear to ear with just you know, pride and she was like the best teacher ever. And, and mom, she would care about us and teach us and let us develop a mistake. I mean, she was like, I can't imagine a better mom, maybe somewhere in Nepal. There might be a better mom. But nobody I've ever met.

Virginia  4:37  
She sounds like a great, great person. Great mom. Great teacher. Yeah. So you were telling me right around 2011 you were starting to notice some things that weren't quite right. Tell us about that.

Mark  4:51  
Yeah, let's see. The beginning. Well, I was I was working at the time and I was an HR executive at Taco Bell. And traveling all the time and busy like any other, you know, kind of leader. And I wasn't really paying attention, but my sister kept telling me she was closer to my mom lived and lived in the area that she was starting to forget things and just not herself. And, and I was caught, you know, this is we've talked about denial, I was in denial, like, Oh, no, she's okay, Marina is my sister and she's okay. And she's now I think we should get her checked out anyway, she's, you know, was pushed me and we took her to UCI MIND, and thank God we did because they had diagnosed Alzheimer's, and to get on medication, so we got on some medication right away. And, and I think it definitely extended her, you know, her health and slowed down or progression. But that was kind of the beginning 2011 12, you know, pretty, she was pretty functional and pretty good. But just, you know, just not herself, but the medicine helped a little bit.

Virginia  5:55  
So you were mentioning, after a few years in maybe 2015, the symptoms were starting to get more clearly defined, as Alzheimer’s

Mark  6:06  
Yeah well probably started declining In 2013 14, like that, and she started just speech was kind of beginning to, you know, be difficult for her. And the forgetting was getting worse. And my sister was trying to help out. And I just realized that I knew about the disease, having read about it and talk to the people at UCI. And I thought I just need to, you know, I need to be with her at home. And I was I mean, Taco Bell is amazing. They gave me a wonderful early retirement package. And I said, I'm gonna just take care of her at home. And so kind of the end of 13, I took an early retirement and to take care of her. And it slowly progressed. And I was doing pretty well taken care of her pretty much by myself. And today, I will tell you for my sister 2013 14. And then by 2015, the speech was very bad. And she needed, you know, watching all the time and, and 24-hour kind of, you know, kind of care, she was still pretty functional, but it was bad. And I realized I needed help. Because I just couldn't do it by myself. And it was just too hard even being at home. So. So then I started kind of researching.

Virginia  7:21  
I know that you did a lot of research. We were talking about that. Before you tell us exactly what you did. Tell us the difference between an agency and a registry?

Mark  7:36  
Yeah. Well, I started out using agencies. And that's what I did it later on. I had some private, you know, private help. But agency is how I started. I know, I never used a registry. But I know the difference is pretty fundamental. The agencies are basically hire employees, the caregivers are employees, which means that you know, they pay them, they manage their insurance, they make sure they're licensed, trained, and all that. A registry the way I understand, it's more like a network. You they, you sort of go to the agent to the register, and you find a caregiver, and then you go through the process and you hire them. So it's pretty different. And I used an agency primarily because I you know, and thank God, I did this and I but as a side note, I suggest this I had a long term care insurance policy that required that use an agency with licensed people and all that. And plus, I had never done any kind of you know, caregiving hiring ever. I didn't know anything about it. And so I thought agency would help me because didn't really know a lot about it. And they know a lot about who to hire and what to do. And I'm so glad I did. So anyway, I started just researching agencies and the criteria was pretty clear to the person have some extended agency have some experience with Alzheimer's. And then I also thought it was important because I knew I wanted to sort of baby step. And I didn't want to have some of the agencies asked for a bigger commitment, like you'd have the shifts have to be eight hours and longer term thing. And I wanted to just to retry this and see how how would work. And so I picked in an agency that had four hours shifts, and pretty good experience with Alzheimer's and, and that's how I got started.

Virginia  9:16  
Did you get to interview the person? Or did they just send somebody in?

Mark  9:21  
No, no, they basically they did anyway, you know, I wanted to but what I prefer is they've narrowed down the list, you know, they give me two three candidates, and then I'd interview them. I was still kind of new and I was a little bit awkward. I didn't want them to be interviewing at home because, you know, I wanted to sort of ease my mom into it. So we'd meet at a Starbucks, I talked to the person, get a feel for them. And then I would give them a try and they'd have a shift. You know, I tried to do a short shift, like a four hour shift and just let them sort of be on the job and see how it went.

Virginia  9:52  
Okay, so you could have coffee with them first before they even met your mom. Right? So you had a feel for what I just see-

Mark  9:59  
Yeah, I just see if I like hem and I, you know, add experience and but you know, as a former HR executive, you know, did a lot of interviewing and I know it's not an exact science, so I thought the only way to really know is, you know, give them a try. 

Virginia  10:10  
Yeah, yeah. I remember when mom was still at home, and I couldn't supervise all the time, and I called an agency and they sent somebody there. And I, of course, met the person. But mom couldn't understand why there was now this woman in her house sitting on her sofa. And I said, “Well, you know, you could use some help shopping and with housework. And she goes, “I can do all that” was not an easy situation. How, okay, so fast forward a little bit. How did your mom feel about having someone there with her?

Mark  10:47  
So that's a great question. In the beginning, what I tried to do is, I tried to be there with the caregiver, and kind of think of as a partnership. So I think that helped a little bit. So I was there for a couple of purposes. One is to evaluate and see if they're the caregiver was, was good. And, at the same time, sort of be a little bit of a helper, you know, and so if the caregiver was doing well, and then I would back off, and if the caregiver was struggling, I would be more intrusive, and, and be there. And so what I what I observed, and the two things, the two big buckets I was looking for, and I figured this out pretty soon was one of the safety because my mom was starting to have a little bit trouble walking, you know, she still could walk. But she started using a walker, you know, that kind of thing. And, and so safety was number one, and then fun, you know, is number two, could they have a good connection? Did they enjoy each other? Was there some kind of, you know, magic there. And, and you could tell that it was remarkable because the caregivers that sort of had it, both the safety and the connection, you knew fairly fast, and the ones that didn't either one or the other? You could tell sometimes not quite in one shift four hour shift, but by the second shift, you knew there was you know, that connection.

Virginia  12:08  
So, you actually had to fire a few people?

Mark  12:11  
Well, good news, the good the good one and good things about agencies, they do the firing, Okay, good, having fired and hired loud people in HR, it's not fun. All you do is basically tell agency that I don't think it's a fit. And that's all you have to do. You know, so it's, it's pretty easy. At that point, there's no relationship. So it's, that's another advantage of using an agency they do the dirty work, if you will.

Virginia  12:37  
Well, I saw your list of requirements and it was five pages long work. I did notice some things that I I'm not sure I would have thought of but they're very important, rules at mealtime, you know, choking it and swallowing. It becomes an issue. Bathroom habits. I understand men get UTs but women get them very often. And they can't tell you what's wrong. And then they turn upside down. medication and meal management. You know, they're all really important topics, the caregiver has to really have a grip.

Mark  13:22  
Well, it's these weren't, these weren't requirements that I would place in the interview process. These were things that once you know, I felt like it was safe, and they had a connection, then I sort of lay these on them and I evolved, you know, they evolved over time, I didn't sort of have this on the front end, but really, as I learned and they're very tailored to my mom, so your list will be different. But they're tailored in the sense that you know, my mom had trouble walking, you know, and transitioning from you know, bathroom standing and all this and so that was really important because, you know, I never actually never fell but people that I knew had loved ones that fell and it was like very bad because they'd be in the hospital in the hospital is the end of it, you know, with a lot of people so the safety was a one so walking was big and my you know, it's funny because caregivers even good caregivers, you know, kind of have a lapse, you know, they'll like assume that you can walk or they don't want to be too intrusive or too hands on. So I wanted to give them permission, you know, so you the rule was to hand anytime that she's in a standing position you want two hands on her, even if he's walking with a walker and look say safe to have your hands on her. Because that's when there's you know, that's when there's a fall if you kind of step back and you assume you know that things are okay so that's you know, really important. swallowing and choking and all that was kind of got worse over time. You know, as the disease progressed, you know, swallowing and chewing and eating was harder. She thought till you know till the very end she ate by herself, which was great, but I was worried that sometimes caregivers would feed her too fast. You know or not let her chew things thoroughly. So I had again, this is very, you know, prescriptive, but it's nice, okay, you know, make sure she swallows before you give her more food. And I know that you, you know, watch her throat I mean, and you know things like that. So it's  and they did they know people once they have some guidelines and some expectations, people were not offended, they actually appreciate it, you know, for the most part, this kind of level of specific specificity I had a boss at Taco Bell would say, keep things simple, you know, duckies, and goats, you know, so I'm trying to be very, very clear, very simple. And they appreciated that and it gave them something to you know, and it also gave me something, if there's a problem. It's like, I could, you know, sit down with them and have the list. Okay, this is the one here, you got to do this little bit better. So that was very helpful to know, you had rules. Yeah, and the cleaning and UTI that's just like basic, because my mom used to get a lot of urinary tract infections, and that's why it was tailored to her. And the pills, and if, you know, the supplements, I was kind of big. And one of the reasons I think she was doing so well, for so long was I, you know, I kind of looked at supplements that were important. The other doctors, you know, don't like, you know, natural stuff, but I think it helped quite a bit. And I do research on those and give her some, you know, supplements and pills. And in all that was very important. So I so in the caregivers were kind of, you know, responsible at a mealtime to make sure the pills were given all that so. So we had some rules about that. And then how fun you know, that's, you know, that's the, you know, connect with her. And it's interesting, because you could see some caregivers that had the technical part of caregiving down, like safety, make sure then fall, but they couldn't make a connection, you know, with my mom and both were important. I want her to have her life be fun and enjoyable. And that's the whole purpose of working so hard to keep her home to have a nice environment. And the caregivers were really important to that not just be stuck in front of it. Oh, no. Yeah, no. And so I had no rules about pay attention to her have fun with her. And, and it's funny within one shift or two shifts, the caregivers that had it, and they were very creative. I mean, they did music, they played, you know, music without even without me asking they danced with her, you know, they would, you know, saying and I didn't prompt any of that, or just all it was just I just said, you know, have some fun. And they knew exactly how to have fun with somebody how to connect. And then it's funny for this for this interview, I decided to go back and call and the good news is caregivers toward the end were with me for quite a while. Which I want to talk about that in a second. But so I called a couple of them up on the phone getting ready for this interview, I said that, “I know you I know what you did, technically, and it was great. But what it what were you thinking about with this connection with my mom, well, how are you thinking, and they said, a couple thoughts. One is never get frustrated, always accept, you know, the patient, the Alzheimer's patient where they are at the moment and never get frustrated”. And you could see was in retrospect, some of the caregivers if they like didn't do what she's what they said she get, they get frustrated. And that doesn't work with Alzheimer's patients, you have to, you have to sort of make that connection be unbelievably patient like you would with a child, you know, or somebody you know, with a problem. don't contradict the person, you know, sometimes you have a tendency to like want to be right with an Alzheimer's patient. No, don't contradict go with sort of where they are. And then you can kind of slowly get them to do what you needed them to do. You can kind of just sort of almost like your roll with the behavior. And you agree and you go come do what they want to do. And then you slowly in a creative way Get them to do and it's hard to teach, but some of the great characters have it. Watch them what they said watch them and really learn them. Because my mom lost her speech probably about the same time all these caregivers were coming help. 

Virginia 18:43

Did she try to speak? 

Mark 18:45

She did, but she just there was no words. I mean, that was one of her earlier symptoms. And her mind was still there. And she could when you talk she would understand for the most part, but she lost her speech. And so some people, some caregivers would be frustrated with that. And that was not good. So the tip that one of the caregivers, I called for this interview said,  “you have to really listen and get to know them for you know kind of who they are and what they want, with no words”. And it was remarkable when you really pay attention. You know how to do that you knew what they would want. You knew what my mom would want you knew when they'd have to go the bathroom. No words, just behaviors and observations and connecting and listening. And just, you know, talk to them. The other thing was talk to them if just because she can't talk back doesn't mean she does understand and it's good for a brain to listen and connect them when you know somebody her face would tell you that she's got it and she understands it. They read they'd play they do drawings. I'm I like to do all that kind of stuff. She would love these coloring books and she would sit there and the caregivers would help her and then work together. And it was just funny to watch as you know, again observed and was kind of part of the without, you know, being the direct caregiver in many, many of the hours, but my mom when they watch him, and the caregivers would like color on the same drawing, and my mom would like not like the way the caregiver to the drawing, they wish she would like, you know, with no words just push the hand away, in a nice way. Like, like, come on, you're messing up my drawing. But that's all part of just like the connection, you know. And, and that's, that's as important as the safety. You know, safety is really important. So is having fun and making this a good experience. And the best caregivers can do both. And so I'd encourage you to not give up. I mean, I had to go through a lot of caregivers, and I learned a lot about who to hire and who not to hire just trial and error. 

Steve 20:40

How many caregivers did you go through, Mark? 

Mark 20:43

Oh, probably oh my gosh, I don't even know exactly. But I would say in the beginning more because I couldn't figure out sort of what worked. And then, you know, it wasn't uncommon to in the first year, I would go through, you know, 10 easy. The good news is once I sort of landed on, it's almost like, you know, you get the bell go, this is a keeper. And then my tip is for everybody is be unbelievably flexible to keep that person. If they want a short shift, give them a short shift that they want long shift, give them a shift. And that's also the advantage of having a few agencies, I didn't talk about that, I would say you got to have more than one agency, if there's going to be a lot of hours involved. And my mom slowly ramped up hours, so big, just a couple hours a week and ended up being 24 hours. So the last couple of years. And you've got to you know, you got to flex around the good people because you don't want to lose them, you work too hard to keep them. 

Virginia 21:39 

Who was managing the shifts? 

Mark 21:41

It was combination. You have to work closely with agency, you know, they would work with a person and you would kind of figure it out how many, how many hours you needed, and what was important and the news kind of flex. And was interesting, because once I sort of locked down the team, after a couple two years or so, and I just said I'm going to do everything I can to keep these people then it was remarkable when somebody everybody has a personal thing, and I can't make this shift, you know, “my daughter's this whatever”. totally understandable, they would actually work with each other, they became a team. And one would say, “I can't make such and such, you know”.  And then they would check with Okay, you know, can Alma, you know, can I fill in for me and we would kind of make that happen. And they would know that okay, I did them a favor. So they're gonna do me a favor. And it was like, it was a beautiful thing. I coordinated with the coordinate with each other. You know, I was like the quarterback, and I was. But it was great, because once I had this sort of caregiving thing down, I was able, I was able to focus on, you know, things like the doctors and the medical care and experimenting with supplements that I thought would help. And I could kind of be, you know, managing the process and not, you know, and that was they always there I was kind of working with them and partnering with them, but, but it gave me the freedom to help her life, you know, be better

Virginia  22:58  
That leads me into what I want to ask you about. It becomes more and more difficult, of course, to go to the doctor's office, the dentist's office, heavens, podiatrist, physical therapist, if you need that, even hair appointments. How did how did you manage those appointments? And at what point did you start to have those professionals come to your home?

Mark  23:27  
Yeah, that's a great question. I would say I would say at the point where I needed people to come to the house, which was you know, at probably 2017 or 16 - 17 because it was just you could always.  I could always my mom even until the end could go to the doctor but it was a challenge. It wasn't easy. So I had I was going I want to prioritize which appointments we you know, we go in which appointments we can get somebody to come to the house. So I wanted her to keep her cadre of doctors you know, she had some sort of general medical conditions she had a cardiologist she had a neurologist, primary doctor those are doctors I didn't want to just give up and they didn't come to your house so I so I prioritize those appointments as we go to there when we need to. Now the other appointments like she had some physical therapy work which by the way, it suggests is to keep flexibility as an Alzheimer's patients you know kind of progresses that that therapy help with continuing her walking until the end and other things. So that can come a physical therapist can come to the house No, that's a no brainer, easy, easy to do. Got to keep their nails short toenails, fingernails, another easy one, but there's no wasn't hard to find a podiatrist that would come to the house to do you know cutting nails and just checking out feet and you know, that kind of stuff. Hair is another one. You can get your hair cut at home easily, very easily. And so this was like I would say you know, slowly prioritize these things. Were it wasn't that hard at home, to do these sort of non-specialized, you know, kind of things. And, and, and how I get those names and be, you know, most of them came from the agencies. So I'd say, “you know any good referrals on, you know, a hair cutter that comes to the house?” Sure enough, you know, they did, and they usually are pretty good. And that's the advantage of a couple of agencies, because it wasn't uncommon for me to say, like a hair cutter when agency would, I don't know, but I call another one of my other agencies that I work with, and they didn't know. So that's another advantage of having a couple agencies sort of on the, you know, on the horizon.

Later on, you know, toward the end, you know, probably in 2019, maybe my mom started not be able to go to the dentist. So it's not uncommon for as I learned and read Alzheimer's patients, you know, like, bite, you know, and, and just have kind of some weird things around that. And so, after one of the dentist appointments, at some point, I realized this is not going to work. And so I was surprised that I actually didn't think I could do it. But I found a dentist that would come to the house, I mean, a full fledged dentist that can do any dental, any dentistry, you could do in an office, they had the equipment, they had the machines. And it was it was actually surprisingly good. And this woman knew about Alzheimer's, because she did this. And she was great. Both technically and connecting wise with my mom at home. So yeah, so this was kind of my you know, my thing, you know, I just backing up a little bit I, I was committed to doing this at home. One is because, you know, I have experienced with homes, and I understand completely why people go to facilities, there's lots of good reasons to send their loved one to a facility. But I had an experience with my grandmother the last couple months of her life in a place and I was not happy with it at all. That was my only experience ever with any kind of caregiving. And after that I said, if I'm, if I can do it, I'm going to make sure I take care of my mom or anybody else I'm responsible for at home. And, and what I've learned, what I learned over time is, there's nothing you can't get at home, there's nothing you can get doctors, which we'll talk about a minute, you get dentists you can get. I mean, there's no service that's not available at home, at all nursing, you name it, that you can do it. And it was like I didn't know that when I started this journey. But I figured that out, you know, as you go. And it's expensive. But this is why we suggested that the listeners think about long term care insurance. Now, in the beginning, it covered basically all of my costs, when I needed 24 hour care, it didn't. But the fact that it would pick up probably about half of my total costs was like, Okay, I didn't have to worry about it. Now, you know, thankfully, I had some savings and all. 

Steve 27:42

When did you get long term care insurance, Mark?

Mark 27:45

Quite a while ago, my dad passed away very young. And so he was, you know, in his late 50s. And so soon after that, I realized it would be good to get long term care from my mom. And so she was fine and healthy. This was like she was in early 60s, when I got it. And, and this and yeah, I'm not gonna talk about long term care, but there's lots of different kinds out there. I would just, I would just do it, you know, research it figure out which kind is best for you. There's a traditional kind, which is sort of pay by month and there's a hybrid kind that's a combination of life insurance and long-term care anyway, I could go on for that. But that's that is something that you guys should look into. It's very important. But this this idea of services, doctors, you name it, it's all available at home, and it's surprisingly effective. And so I kind of reserved the specialty doctors, my mom had for the go to the office visit. 

Virginia 28:42

Okay, okay. Yeah, you know, I had a dentist, come visit my mom and it was a little scary for her at first, but then she got relaxed. The dentist knew how to handle people with dementia. And it's a good idea because should they have any tooth pain, they can't tell you. They just act out. They can't say my tooth hurts. So preventative dentistry is really a good idea. 

Mark 29:14

And this lady that I chose was awesome. I mean, she had she had fun she had what she was doing and it was all these experiences if you get the right people are not you know, not bad they're enhance you know, their lives not take away from them.

Virginia  29:28  
Absolutely. Well, Mark I've I don't know if I've ever spoken with somebody so organized to see the details of at home caregiving of a loved one with dementia. It's there's a lot to take care of. There's a lot to know. And I'm sure that this is very helpful to a lot of people out there. You've been very successful, you were successful at it and you know, it worked for you. It worked for you. Before we wrap up, Steve, do you want to add anything to what Mark has told us?

Steve  30:05  
I'd like to ask Mark about, what your journey was like yourself? What happened to you through this process? Obviously, I have a lot of admiration anybody who has been a caregiver, and meet somebody who's cared for a loved one at home, hats off, hats off, you know, I couldn't do it. And I, but I've never really had a chance to ask somebody, well, what was it like for you? I know, it was like, for me, making the decision about community was terrible, but making the decision about keeping a person at home keeping a loved one at home? What were some of the pains that you went through?

Mark  30:48  
That's a great question. Well, I, you know, with a 10-year sort of caregiving at home, you know, roughly, it's a journey and change, you know, change based on different progressions of Alzheimer's disease. But I would say, you know, early on, it was really about, you know, learning and figuring out things, and, but, you know, emotionally it's tough, because you see, your loved one change. And, but it's almost like, the combination, you know, you really are emotionally connected with the person you want, you love them. But you're kind of the manager. And being an executive for, you know, my whole career, there's that part of your brain that says, “Okay, I'm going to manage this well, and I'm going to be, you know, a loving, caring person, and make my mom's experience, you know, terrific”. Why, because she took care of me. It's a little bit like, no, that's simple. She took care of me beautifully and raised me right, and I couldn't be the person that I am. And successful and all that without her. So it's turned about time. But it's, it's a tough journey I had at some point, I had to get some help. And not just all those caregiving help, and all this, you know, kind of services, but I had, I went to a therapist, and got, you know, some advice, some help some just kind of processing through it, I saw I'd suggest, even if you have a good support system, which I ended up getting with, with outside help, that you still, you know, get the personal attention.

Steve 32:22

That you need help yourself?

Mark 32:23

Yes, you need help yourself, it's not easy, no matter and, and the people that in which I can't even believe that people take care of their loved one at home for a long, long time. without all the help that I had. I was very, I mean, I was so blessed. With a long term care and a beautiful career, I was able to do these things. But I know a lot of people can't so but so especially if you're out there alone, and you don't have a good support, system work caregiving ability, then you've got to get help. I mean, you because, again, 2015ish, I after about two years of sort of being home and doing this myself all by myself, I said that I can't do any more, I can't do it. And I had to get the caregiving going with had to activate the policy, I had to get the support system, I had to go to a therapist at some point. Because it's very, very challenging.

Virginia 33:11

No, there’s nothing tougher than being 

Mark 33:14

No, it's hugely, you know, physically demanding, emotionally demanding. I was for, you know, for that last year, before I got the help. I was, you know, sleeping in my mom's room because I had to watch her 24-hours a day. And, and not getting enough sleep and not being a good caregiver. You know, and that's kind of the point of like, if you don't get help, you're not going to be effective as a caregiver at some point. I don't know who you are, even if you're Superman. I mean, so you need to get that that network going.

Virginia  33:40  
Yeah, it's really true. Well, we can't thank you enough for joining us today. 

Mark 33:47

Awesome. Thank you. 

Virginia 33:47

I feel certain we're gonna have you back. Because I know you have more information to share

Mark 33:51

Thank you I would love to come back. 

Virginia 33:53

We want to do a podcast on safety in the home, things you need to be aware of in your home to make it a safe environment.

Mark  34:01  
There's a lot of things you can do. I'm happy to come back.

Virginia 34:04

I'm going to be calling you soon

Mark  34:05 

Because safety is you know, as you know, safety is number one, and if you're not safe, there's not much that goes after that. 

Steve  34:12  
I have one more question.  Just how do you think your mother felt about you?

Mark  34:23  
Well, it's a good question. I think she'd be proud of me. I think I took care of her really well. You know, it's funny. You know, being a high achiever that you'd never think you did a perfect job as a high achievers. And I we're not gonna get into this today, but I made some mistakes at the very end in the hospital. And I regret that but I think net net I did a great job and she'd be very proud of me. I think she had fun. I mean, you could, even as in the depth of Alzheimer's, even the last two years, you could see her having fun with the caregivers having fun with me. The creative exercises, you know, she couldn't sing, but she would love to she would shake on her walker like dancing. So she had a good life. So I think, again, I never know because she lost her speech, but I think she would be happy that I helped her.

Virginia  35:30  
I think she would have told you, “you’re a perfect son”. 

Steve 35:34

I concur.

Virginia 35:36

Thank you to our listeners for tuning in today. And be sure to check back soon for more important caregiving topics on Spotlight on Care.

Steve  35:45  
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