Memory Care move with Josh Marquess - Real Talk series

In this episode of Ask Dr. Mia, host Dr. Mia Yang speaks with Josh Marquess about his family's journey in transitioning his grandmother with Alzheimer's into a memory care facility. They discuss the special bond Josh has with his grandparents, the early signs of Alzheimer's, the emotional challenges of witnessing the progression of the disease, and the difficult decision-making process regarding care options. Josh shares insights on the benefits of memory care, the importance of family support, and the positive aspects of change in caregiving situations.

Takeaways

• The bond with grandparents can be profound and impactful.
• Early signs of Alzheimer's can manifest in confusion and anxiety.
• Recognizing the progression of Alzheimer's is crucial for family members.
• The decision to move a loved one to memory care is often difficult but necessary.
• In-home care can be a viable option for early stages of Alzheimer's.
• Memory care facilities offer specialized support and activities for residents.
• Long-term care insurance can alleviate some financial burdens of memory care.
• Understanding the differences between assisted living and memory care is essential.
• Positive experiences can still be had in memory care settings.
• Reframing the narrative around caregiving can lead to a more positive outlook.

Transcript

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Welcome to Ask Dr. Mia podcast, where your pocket geriatrician is here to spread aging and caregiving knowledge to you or the older adults in your life. And today we have a special episode with my friend Josh. And I asked Josh to come on this podcast as one of the few folks who are not in healthcare to be a guest. because I wanted to talk through he and his family's recent transitioning of his grandmother from her home into a retirement facility. And I did an earlier episode when the podcast first started kind of talking about different levels of care and it felt a little bit more educational and less conversational. So This is a way to kind of talk through Josh and his family's experience in a way that hopefully will be also helpful for those of you who are listening. So welcome to the podcast, Josh. Thanks Dr. Mia, appreciate you having me. It's been always great talking with you and chatting. I've learned a lot and it just so happens that I've been going through quite a bit of experience recently with like lots of changes with my grandmother going through Alzheimer's. So I'm happy to sit down and chat with you and hopefully anyone that's listening, this can resonate with as well. Absolutely. So yeah, if before we get into her recent changes in her health, can you just tell us kind of how would you describe your grandmother and your grandfather as to people that they are? Yeah, absolutely. So my grandparents are quite special as everyone says about their grandparents, but in my situation, it's a little bit unique in the sense that my, actually my mom and dad had me when they were 16 years old. So they were very young, still in high school, still juniors in high school. And whenever I was born, obviously they were still living at home with their parents, with my grandparents. And so my grandparents kind of took me in under their wing and were in a lot of ways like an extra parental figure for me. So very close with my grandma and grandpa. I've been, you know, even after moving out, I moved back in with them when I went to college. I lived there for several years. I visit quite often. So they're very, close to me. And my grandmother just is, we've always had a special bond. So she's, she's a very sweet person. Lived in St. Louis her whole life mostly since she moved from Indiana and we've just formed a very special bond and the thing we started noticing I would say probably six years ago we started noticing some signs of Alzheimer's and It obviously hit hard Especially considering, know, she's like I said, she's another parental figure for me But but yeah That's mostly the dynamic of them. That's great. Yeah, I have a special relationship with my grandparents to having grown up in China while, you know, my parents were here in the United States. So definitely understand the grandparents as almost the parental figures. And and it's an interesting and very special dynamic that I know not everyone experiences, but also makes all of this so much harder for you for you as well. So what kind of work did your grandmother work outside the home? Or what kind of has she always lived in St. Louis? She moved to St. Louis. My grandfather actually, they were in Indiana together, in Monticello, Indiana. And he ended up getting a job in St. Louis. Originally, I think it was McDonald Douglas and then Boeing retired from there. So they moved to St. Louis when my grandmother was, I want to say around 18 or 19. And my grandpa would have been in his early 20s. at the time. And so, you know, they moved to St. Louis, left their family behind and he got a good job there. And then shortly after they had my father. That was a whole, quite a whole debacle with an interesting dynamic there with Masters and Johnson. Then they had me, my father had me at 16 and as my mom and my dad finished high school, And also they ended up going to college as well. After they went through college and the whole time while they were in school, my grandma and grandpa were raising me. But for her job, she actually did work at a hotel for a lot of the time period that I would have been growing up. She was working in a hotel and also managing an office building in St. Louis. And then... While she was doing that during the day, my grandfather actually switched his schedule and worked nights. So a lot of the time during the day, whenever my parents were at school, my grandpa was the main caretaker for me. And then they would switch off when my grandma would come home and take care of me until my parents were ready from school. That's an amazing amount of sacrifice to have them be available around the clock and also work. yeah, so tell us a little bit more about what you guys have first noticed six years ago. Yeah, so it's, everyone's got different stories, but it's been, there's some funny ones in there. But I think a couple things that we noticed, she just started to seem a little bit more confused about things that she used to be very confident about. For example, every Christmas, she would make this special recipe that she always made every year. She knew exactly how to make it. Her mom made it as a kid. she, that's one of those recipes that she never had to measure anything. She just knew exactly how to pour things in and cut everything up. And we get to, I think this was about six Christmas ago, six years ago. She's making it like always, and we're all excited to have it. And she starts to get a little nervous. and she seemed stressed out and we didn't really know what was going on. And she was like saying things like, I don't think it's going to turn out this well this year. It's probably not going to taste good. And we're like, grandma, it's fine. You make this every year. This is going to be great. This is the best dinner ever. And she just was getting really nervous. And at one point she kind of had like a little mini panic attack and just left the house and went to the grocery store to buy wings from like the local grocery store. And we were just like, man, what is, what's going on? Like, why is she getting wings? Like what? And she just, we ended up finishing the recipe for her. She was almost done. But she just freaked out. And that was the first real big sign for me. You know, that kind of stuff that was just like automatic to her started to become like hazy. And every year after that, she did not know how to do the recipe. She was obviously very conversational at that time, could talk very well, and some people would never even have noticed, but there's things like that that came up. so, also I think that there was an experience the Christmas after that where my wife and I were going after Christmas shopping with, actually no, my wife and my grandmother were going after Christmas shopping and my grandmother was driving and she ended up... getting into the turning lane to turn left through oncoming traffic. But instead of getting into the turning lane, she went one lane too far into oncoming traffic and just kind of froze. And she saw the cars coming at her and she just kind of froze and didn't move. it was things like that that caused a lot of panic. that was actually the last time she ever drove. But you could see the panic on her and she just got really confused. Yeah, I'm sorry to hear that. Yeah, those two things, cooking an elaborate dinner that you make like once a year for holidays or driving in a busy road or environment where there's a lot of other cars, those tend to be situations where it actually requires a lot of memory. We don't think of those as memory necessarily because it's not having to remember something that happened a couple of days ago. But those are actually very high level functions that we do in our daily life that takes a lot of coordination and planning and uses different parts of our brain. Overall, I call that what's called executive functioning, where you can sequence. when she was able to make those recipes without really thinking about it, she kind of knew how much part, when to put it in the oven. you know, which step to do first. And I can see why she got nervous and anxious. And usually in some folks, that's they are aware that they can't do it the same way that they used to. And that is a very anxiety provoking situation. And also it sounds like she kind of froze or had a similar emotional reaction when she almost drove onto oncoming traffic and understandably did not want to drive again because she didn't want to be in that situation again. Yeah, so kind of give us the short summary of what happened between, you know, those first signs six years ago and now. Yeah, so a lot's happened since then. know, things, things progressively obviously got worse over time. And, I would visit, I live in Florida and she lives in St. Louis. So I would only visit, I would only get the opportunity to visit like maybe once a quarter or so. But every time I go, I would notice a little bit worse symptoms as the stages progressed. It would come to things where she was starting to repeat a lot of the same stories. She would latch on to things from childhood, like core memories from childhood, and start to bring them back to present day, which is very common with Alzheimer's. She would get some of her childhood memories mixed up with things and kind of intermingle the certain situations of her daily life. So I noticed that quite a bit. And then, you I started having people like from family members reaching out to me asking if she was okay, like what, you know, other people started to notice as well that people that were just like coming to visit her just for one time. And that came about a couple of years later. You know, she's just, people will come over and she would just start repeating the same things over and over again in conversations. And you started to notice, I think about two years ago, you would start to notice that when you would talk to her about something like, you know, hey grandma, know, telling you about my job or telling you about a trip I'm coming up. The responses started to get more of like less interested in actually hearing what I had to say. And I noticed that she would kind of just be like, that's cool. And then just change the subject to something, you know, irrelevant to the topic. And so the conversation started to become one-sided a little bit more. And at first it was really hard. I struggled with that. I struggled just knowing that I was losing my grandmother and every visit started to get harder and harder and more emotional for me. And it took a lot of prayer and a lot of meditation and a lot of talking through things with my wife to kind of process that just knowing that time was ticking. But just, you just recently is kind of when we decided to make the change as things progressed. And we can talk more about that in detail, but yeah, think we decided to make a change probably about, would that be like four months now, maybe? I could be getting the timing wrong, but yeah, it's when we... yeah. And I think you're totally aware of that grief, knowing that her personality and way of communicating and relating to you has been changing for a while. And that is really, really hard, especially when you don't see her every day. And when you do see her, it seems also extra noticeable. So has she been living at home with your grandfather this whole time? Have you noticed changes in him as well or kind of how they relate to each other? Yeah, they had lived in the same home since I was a kid. They got that house right before I was born. Well, a little bit before I was born, but they lived in that house their whole life. It was their dream home. Still is his dream home. They've got four acres of land and it's a beautiful house. so they live there my whole life. And I noticed that as things started to get worse, with my grandmother, my grandpa started to also change as well. As the primary caretaker, he's obviously started going through a lot more stress. I think he started to not really understand things at the beginning. And when we first noticed that she was going through it, at first we didn't know what it was. We assumed it was Alzheimer's, but we weren't quite sure. And we started to inform him of what we think it is. And I think he went through a lot of denial in the beginning stages. He would kind of say, like, she's fine. There's nothing wrong with her. Her memory's sharp. And I'm like, grandpa, this is not normal. And I think we would point out some of the things that were very obvious. And you could just see that. He knew, but didn't want to admit it. It was very hard for him to admit that she was going through that. And rightfully so, that's a really tough thing to deal with. And he can tend to struggle with sharing emotions sometimes. So having real conversations about it also is not easy for him. lots of changes on that front. As things got worse, now he's in a stage where he's accepted it and he understands all about what's going on. It's cute, he's actually got books to read up on it and he's been trying to help her all along. But yeah, it's gone through lots of stages between denial, frustration, confusion, and then he started to get agitated and then we also noted a stage where he was kind of buffering a little bit more. whether it's like drinking an extra beer or something. Nothing crazy, but just kind of the buffering that you go through when you're in denial and not processing the reality of situation. Right. So did anything happen four months ago or six months ago that was a sign to the rest of the family that their living situation needed to change? Yeah, well it wasn't anything like immediately drastic. I think just things had started to progress worse and worse where caretaking for her was getting more difficult and a lot more demanding on my grandfather. I think the one of the biggest things that started to I think weigh on him, although he would deny it, would be just hygiene. I think her hygiene started to really decline in the past year. And things like going to the bathroom started to become things that my grandma would not remember how to do properly. And there would inevitably be messes and stuff that can be very hard for a partner to clean up after and to consistently. have to take care of that and like wash clothes and sheets and it was really, it started to really weigh on him a lot and it got really tough. And I think that was a big thing for him, him realizing that this is not gonna get better and that this is something he's gonna have to do every day. you know, he's got, like I said earlier, they have four acres, they've got a lot of land, he's got a lot of maintenance to do on the yard, he mows a lot and that leaves a lot of time periods where he's, not in the house, visibly watching her. And you can't, when he's on the tractor, can't have grandma just sit on bench outside so he can always keep an eye on her. And things get worse when, and I think there was one more situation actually that I was really concerned about, and they have a golf cart. And there's been a couple times that he told me where grandma got on the golf cart and got their little dog on her lap and decided to take the golf cart for a ride. and almost going into the ditch, taking it to the neighbor's house, asking them where grandpa was, and also she ran the golf cart into the garage a couple times. So there are situations like that where I reminded him, I was like, look, like this, when you are not watching her physically, it is becoming dangerous. And that's when we have to take it to the next level. know, yeah, we do something about it. Right. So let's talk through kind of the decision point at this instance where some families would be considering hiring help into the home. Obviously, they have quite a bit of land. So it's almost like he cannot necessarily be in the home all the time taking care of her while other things need to be done on all of that land versus kind of moving. And in the move, there is the potential of having the person with Alzheimer's disease move versus both of them moving. did, how, and different family members may also disagree about which of those options might be best. So yeah, let's talk through that. Yeah, for sure. That was probably the hardest decision that we had to make. We all had to agree on something. And the reality is, is we didn't have to agree. was the, obviously my grandfather, my grandfather is very sharp and capable of making decisions. So ultimately he's the final decision maker. But, you know, we all had our say in the situation and there was some disagreements on it, but we went back and forth between a few different options. Originally, my grandfather did not want to leave the house. Like I said, that was their dream house. Still is their dream house. He's got two garages with multiple cars he's building. So he, you he didn't want to go somewhere and leave all that behind. Understandably. And so the first thing we looked at was like hiring in home care. And I think that that became a real option that we, you know, we did research. My dad spent a lot of time. finding out people, contacting people, insurance, getting all that information of like actually pricing out, having people come to the house. And I think we probably would have gone that route. Maybe had we done it a little bit sooner. I think that that option is a great option for a lot of people if they do it at the right time. I think that The problem is that I think my grandpa was a little bit, what do you call it, with allowing anyone else to care. He kind of took the responsibility under his wing. Like, this is my wife, till death do us part, I will take care of her. It's my job. I don't need the help. And I think that because of that, we decided not to go that route. But for a lot of people, I feel like that's a great option to, especially if you have someone who's in the early stages of Alzheimer's. Like, and those stages, my grandmother would have been fully coherent about knowing that she's leaving her dream home. And I don't think she would have allowed that. She would have said, I'm not leaving. is, know, it would have been a lot harder for her. So having someone come into the house as like a friend is kind of, we even had people visit and they were, they were friends. Like we're going to help. is your new friend. And I think that those options can be great for a lot of people transitioning before they move into a different living situation. But so we started with that, decided against it. And as things got worse, I flew down to St. Louis and kind of had a heart to heart with grandpa. And I think we ultimately decided at that visit a year ago to actually just kind of look at the housing situation. And it started out as let's go to independent living. And that way you can go in there with her and you can still live at your house. and still live there, have your cars and have your land and mow your yard, which you love to do. And then you can also spend the night with her at the independent living place, as many nights as you want or as little as you want. And that was really appealing to him to be able to have her live there and even to bring her back and forth even between the two places. And so we set up an appointment with a couple of places and they did an initial meeting with her and they realize, yeah, they did an initial meeting and they realized that she wouldn't qualify for independent living at that stage. yeah, exactly. So when you mentioned that she was having hygiene problems, to me as a memory specialist, that means that she is in the moderate stage of dementia. By moderate, I mean they're having difficulty with their personal grooming. Typically remembering to bathe or needing reminders for bathing or showering is the first thing that families notice. But it sounded like it was more than that. It was toileting and kind of cleaning up. And typically that type of need for hands-on care is even at times, sometimes beyond what some assisted livings may be able to accommodate. And the independent living is only a good option if folks don't necessarily need a lot of in- home care and they're just looking to downsize and kind of move into a retirement community together, utilize their social interactions and classes and meeting other people. But I think of independent living almost like just being on your own because there are very few services that will come with independent living such as managing the medicines, changing diapers or cleaning up or showering. If someone needs help with showering, that is actually something, well some independent livings will do showering and bathing, but I would say if you're needing hands-on help, that's at least an assisted living level of care. So what happened? They said she's too impaired for independent living. She needs what? Assisted living? Or memory care? it ended up being memory care. we learned so much in doing the research about this. I knew so little about the assisted living memory care. I didn't know anything about that, the different options that they have. And I think that a lot of people have a stigma that putting a loved one in a home like that is just putting them into a nursing home. that ultimately is a place where they can just pass. it's like, I think a lot of people, I think me and a lot of other people that I've talked to kind of have a negative stigma that it's like, you you're kind of just putting them in there and it's not necessarily like a good place for them to be and they should be doing in-home care. The reality is they're so nice and the places are amazing. There's tons of amenities. The people there are amazing. And there's so many different options for them to get better care than they can a lot of times at the house and it's just ultimately way safer and I think that kind of opened my eyes in and Allowing me to be okay with the situation and actually be excited and happy for it She's she's going to a lot of classes and stuff. But but ultimately yeah So we went there and independent living obviously was off the table at that point as you mentioned assisted living was an option that they considered, but after talking with them in depth and interviewing with the staff at the place, the assisted living options that they had didn't really come with a lot of the care that she needed, like changing diapers and stuff and stuff like that. Really what assisted living was kind of just helping with laundry and cleaning the house from time to time, but... I think what my grandpa or what I at least convinced him that he needed help with was the hygiene stuff and bathing and changing diapers. And that just wasn't an option for assisted living. And after they did the test, they realized that she actually qualified for a level two care of memory care, which is there's three stages of memory care at this facility specifically. And they offer like kind of three different levels of assistance for memory care. And she was already qualified into level two. And so that's ultimately what we decided to do. Luckily, my grandfather had long-term insurance, which some people may have that can help with that cost and greatly offset a lot of the costs for that. But yeah, that's the decision we made. Yeah, that long-term care insurance, feel like is something that people don't even, insurances don't even offer all that much anymore. But back in the day, folks were able to purchase ahead of time. And typically when I help families fill out their long-term care insurance or disability insurance paperwork for particularly long-term care, They require people to have at least two activities of daily living that are in need of assistance. So those activities of daily living are bathing, dressing, toileting, walking, and feeding. So she needed bathing and dressing, toileting, basically. It sounded like she had three. And then the big, and these are, widely variable in terms of what assisted living and memory care offer in different parts of the country or even in the same city because assisted livings are not regulated to the same degree as short-term rehab or even long-term care in a nursing home. The government doesn't have as specific requirements that are kind of the minimum requirements for what people call an assisted living. And so that's why when whenever I tell learners or families that I'm coaching in terms of their level of assistance is to actually ask what does assisted living mean? Because that varies depending on where you go or which facility you go. For example, in North Carolina and where I am in the foothills of North Carolina, the Piedmont of North Carolina. Typically, assisted living can offer bathing. Some assisted livings can offer kind of toileting and changing of diapers, that kind of thing. But that varies. And then some places have what's called an assisted living wing versus a memory care wing. And the big difference is that memory care has a locked door typically. And for folks who are able to walk and wander, a locked door may be necessary to prevent them from going outside when it's really cold and not dressing appropriately, or if their building is near a busy road, kind of preventing folks from just wanting to walk out whenever without any sort of cues for safety. And then there are some assisted livings that need a code to actually get in, which by essence almost behaves like a memory care. But there are differences in terms of pricing. And typically, in my experience, memory care is the most expensive because it's the highest level of care. And that once people move into memory care, they don't necessarily move to another place because it would be too difficult for the person who is living there to adjust to a new environment and they're kind of cared for within the realm of memory care into what's called long-term care where people are needing physical help as well as perhaps not walking. Is your grandmother still able to walk? Okay, yeah, very much so. And so that's typically kind of how How does different levels differ? And so is your grandfather still living in his house, but your grandmother is in memory care? Okay and now he's 15 minutes away, he drives us here every day. At least once a day. Yeah, that's great. And he can be a partner, a spouse, and that kind of be everything in terms of all of the roles. And as you say, a lot of these facilities have a number of activities that are arts or music or socializing or learning about current events. And that can be actually good for people's brain to have that stimulation. We're just not supposed to be isolated in our house watching TV all the time. That would make me depressed too and sad and all my brain cells are dying. So sometimes I tell folks that home, while we all wanna be at home, may not be the best place. And just as you said, moving to a facility is such a difficult decision, but it's not necessarily one that is always done to a poor quality of life. And sometimes when people are having difficulty managing at home, they actually can be better in a monitored, safe environment where their daily needs and medical needs are taken care of. Yeah, absolutely. I agree totally. I think that the living situation at the house obviously wasn't bad and grandpa was a great caretaker, but I think that there necessarily wasn't a lot of stimulation for her. And primarily a lot of, you know, there was a lot of TV watching, the news was always on and she wasn't getting the exercise or the... you know, she wasn't doing a lot of the things I felt like she should be doing at her age. And she kind of stopped doing puzzles and stuff like that. I think they got a little hard for her. you know, it's hard for grandpa to know, like, exactly what to do for her to kind of push her to to stimulate her brain. And I think that I'll never forget going visiting her like a month after she moved in. It was a little hard at first, but I remember going to visit her and I couldn't find her. I didn't know where she was. I looked at the activity board when you walk in and she was in music and they had her in a different room and there was a guy singing and playing guitar and she was dancing and singing the song. They were playing songs that everyone knew and she was dancing. That puts such a smile on my face just seeing her there so happy. And then she saw me and she was like, it was a great memory. Yeah, yeah, that's great. I'm so glad that she's doing well. She's liking where she is and that she's having fun. And that quality of life is so important. And just because someone has dementia doesn't mean that the person is not still there and that there are still a lot of things that can give them a lot of joy. Music being one, we know that folks actually remember music and songs way better than what they may remember for breakfast. And it's just stored in a different part of the brain. People do come alive with music and with art. And sometimes I think our culture is so left brain focused, so logical and language. And we can still use other parts of our brain that are not affected by dementia. And that is still both valuable and enjoyable. Yeah. And I know that sometimes the decision to move is very much financial as well as just medical. So I'm glad that for your family, the financial piece of things wasn't as big of a player as some of the families that are also going through this as well. And I know it has come as a big surprise to a a lot of my patients to find out that Medicare actually does not pay for someone to sit in the home with grandma for a couple hours a day. That type of care that could be done by a friend or a neighbor or a church member is what Medicare considers custodial care. It's not a term I like to use because it's actually very important work and it's When done well, uses a lot of skills to be able to calm down someone with memory problems and maybe feeling anxious. I think that's such important work, but unfortunately, Medicare doesn't pay for that. Medicare pays for, say, a nurse to change IV antibiotics or deal with wounds. They pay for physical therapy, occupational therapy, or speech therapy, which are all great. However, when you have someone with dementia, they have hard time learning new information. So oftentimes rehab becomes challenging because they can't learn new information. that Medicaid in a lot of, know, in the United States at least, depending on who's listening from where, Medicaid is really what pays for that long-term care in our country. And there's a lot of rules and challenges with that that we will. won't go into in today's episode. But thank you so much for joining us, Josh. Anything else that you want to kind of let the audience know, like if they were in a similar situation, anything that you wish you had known earlier? Yeah, think, ultimately, I think to understand that I think the hardest thing for me was just letting go and realizing that you know, having your loved one go into a good place like that where they can get better care. It doesn't have to be a sad thing. I think that was a big realization for me. You know, I just had Christmas. It's January now. We just had Christmas and it was technically the first Christmas that we had where my grandma wasn't at the house. And I think that really was hard for me. But, you know, we got to go visit We all went as a family to visit her there and we had another Christmas at the house. I think just ultimately realizing that you can have great memories still with her in this new transition. And it's to look at it more positively. She's got a lot more stimulation. She's very happy. She has a lot of new friends. She loves dancing there. There's tons of activities. And I think like reframing her moving out. into a positive light and looking at the positives versus the negatives has really helped me. And I think that there's so many good places now in every city that anyone can find someone for their family member now to put tons of activities and stuff. I think making sure that you look at it positively is something that I wish I would have grasped a little bit earlier in the situation. that's helped me. Thank you so much, Josh. And that is so true. Like change doesn't have to always be negative. There can be positive aspects of change as well. So we'll leave you all with that. And thank you for listening. And if you like, enjoy this episode, please follow the show by clicking the plus button on your podcast player. And you can also sign up. for my very occasional newsletter by going to the website for the podcast, www.miayangmd.com. And that's where you can put in your email and I will occasionally send you information like what you wanna hear on the podcast or any other feedback. Thank you so much and talk to you next time.