Time for a Change? Tips When Considering Home and Community Living Options: Five Essential Tips / Alzheimer's and Other Dementias

This is the Whole Care Network. Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. As caregivers, almost all of us at some point ask ourselves, is it time to change my care receiver's living situation? In this episode, Sue and I are going to talk about some of the early things you need to think about when you're at this point. We have five tips. Sue, let's get started. Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. We're going to start with an overview of some things that we're going to consider for all five of the tips. Beginning with, it's not a one and done. As we continuously go through our journey, each of these tips, we're going to evaluate, adjust, evaluate, adjust. There are going to be inflection points throughout and go no-go decisions. For example, an inflection point might be a change in their medication, shift in their diagnosis, shift in our ability to keep ourselves or them safe. So throughout the journey, we're going to have those. And several things we want to make sure are that probably the most important thing we're going to say all day today is don't wait until you need the answer right away. Start this process early. Learn from other people. Ask questions. Start gathering information. And learn about it way ahead of time when you can. We can't always, but as soon as you possibly can. So that what you are doing is adjusting what you already know, updating what you already know, adding to what you already know. And in some cases, as we'll talk about pre-planning things that you may have for the future. So there's that. And then don't do this alone. Talk with other people. Get multiple lenses, multiple perspectives. Educate yourself on it and have a sounding board. Have other people who you can have as a sounding board. And we're starting with one of the most important of all of them, which is Nancy Tip 1, Finances. Yes, we want you to start with understanding your current and future financial resources. So one of the best things that we can recommend is that you get with a financial advisor. If you don't already have a financial advisor, there are financial advisors who focus specifically on the elderly or seniors. Definitely these people do this all day every day. They know how to evaluate and help you evaluate your financial resources. Also elder care attorneys. Awesome. Elder care attorneys really have insight into how to get into government programs that maybe you don't realize you could be eligible for with some tweaks. So leverage elder care attorneys, leverage financial advisors, and take a little bit of the pressure off yourself having to come up with this and understanding it all yourself. But let's go through really the two sides of the financial equation. First, on the income side, the money side, think through your care receiver savings, yours if you're participating in paying for care, any kind of pensions, long term care insurance, any kind of specialty insurance you have that might pay out in this situation, any public health insurance for people with low incomes in the US that's called Medicaid. How are you or could you or your care receiver be eligible for Medicaid? Any sort of public pension programs in the US like Social Security. Most of those will actually kick in with a disability and dementia is a disability. So if your loved one is not already taking Social Security, you can apply for them to get disability and they will be accelerated to full social security. Also understand any other family contributions that might be coming into the equation. Now that's on the income side of it. Let's talk about on the expense side of it. So consider cost, particularly costs that might affect things at home such as home modifications, safety adjustments you're going to need to make. We'll talk about those in tip three. We're going to talk about bringing caregivers into your home at some point. Think through the cost if you're going to supplement with day programs. Some of those day programs are government supplemented and they don't cost anything. Some you have to pay for, but that's a way to supplement your caregiving that you want to put into the cost equation if you're considering it. Something take very seriously if you're the primary caregiver or if you're one of the caregivers that's going to need to participate on a regular basis, take into account any potential lost income. And that might mean going part time. That might mean becoming a caregiver 100% of the time. Now in the U.S. there are programs that will pay if your loved ones eligible for Medicaid that will pay you to be a caregiver. So look into those programs as well. But with my husband, I had to go part time in order to supplement his care and give him the kind of care he needed. I did that for about two and a half years and then eventually retired completely so that I could focus on his care. So income reduction or losing your income altogether is definitely something that you want to consider. Now you're going to take all of those costs and compare them with the cost of a care community and understanding that all of these costs we're talking about right now. When Sue said this is not one and done, this is a evaluation you want to do on a consistent basis. Their care needs and the expense of those care needs is going to evolve and change and increase over time, be it at home care, be it in a care community. So you're evaluating this financial situation today. This is not necessarily the financial situation for the long run, but it should be a financial situation for today and for the near term. So you're ready to go on to tip two? Absolutely. And tip two is evaluating our care options to learn and understand what our choices are. And we're going to focus on three of them. One of them are non-residential options and a second one is our in-home options. And then third is continuing care communities. Each of those have different considerations. One of the things that we have in our community that many communities around the country have to support us with that is teams who help us navigate our senior care options. Down in our community, it's called senior care authority. So at no cost to us, we can talk with them about what the different kinds of options are. And the importance of us asking the questions to learn about it for us is to understand the differences between them. And part of it is, for example, with the non-residential types of care where it could be a respite program or a memory cafe or a day program, it's understanding what those include in our communities and how well our care receiver can be using those to support as a kind of a stopgap method or as a way to try out another kind, for example, of living in a community. So there are different ways that we would learn about those and understand them. I was able to take my husband and my dad to several of them, and it was interesting how immediately we could know whether they preferred them or they didn't. And so we learned about their preferences. And there are a lot of different choices that we have with those. So that was one of them. And then another one is that when we're evaluating the kinds of companies who would provide the professional caregivers who are going to bring care into our home. And they have different pricing models. They have different service levels. They have different teamwork opportunities. So a lot of different things to consider. And we want to understand what the questions are to ask and get comfortable with how our care receiver is going to be supported. And also because we're a part of that team, we need to be able to be supporting them as effectively as possible. And then there's the consideration of what would a care community look like. And when we're evaluating what care communities are, there are a lot of different questions to ask. And as you can tell from all of these, we want to make sure we're not going alone. We're not asking the questions alone. We're getting someone else who we can be bouncing the ideas off of, who can be another set of eyes and ears, and where we can be getting questions that they can be sharing questions with us and the information as well. But in the care communities, they have different models of care, different staffing levels, different kinds of the programs they have for dementia-specific care. And they also have, and one of the things that we've talked about is getting access into them. So they have waiting lists. So even if you're not sure if your loved one is going to be going into a care community, or if they are going to be wanting a respite program or a day program that you're going to work with, if they've got waiting lists, you can get your name on the waiting list so that, because some of them are three to five to six months long, so that if something becomes available down the road, it may be at the time when you actually are going to need that choice. So you've got different options, and you want to consider it for specifically your loved one, and then also for your comfort and what you need. Yes, I love that. And Sue, for example, in the care communities, even though my husband stayed at home through his entire journey, about five years into his journey, I visited with two friends, all of the care communities that I evaluated and decided were worth visiting within my area. Some were memory care specific, some were communities that had memory care units, and narrowed it down to the two I liked the most, and then kept up with them and made sure they kept up with me so that I understood what the waiting lists were like and what the options were and re-evaluated the pricing on a regular basis. Another thing I did for in-home care options that I wanted to mention, for my father-in-law, he was a veteran. And so we were able to go to the Veterans Administration, and this is U.S., obviously, the Veterans Administration, and get him enrolled in VA health care, and they provided part-time care four days, four hours, four days a week at home, which gave my mother-in-law some kind of respite. Some of the things to look at are professional caregivers, but you can get some of that potentially at no charge, so something to look at. Which is hugely helpful, and for example, with my husband, I leveraged the day programs for two different ways. One was to evaluate him in that kind of a program, and the second thing is, when I had the top two care communities I was evaluating, I had him go into their day programs and see, how he felt, and it was night and day, one versus the other, so it gave me a chance to test out the community and how he would adapt to those communities. That's huge. I love that. I love that. That's awesome, especially since you could tell black and white, so that makes a huge difference, right? As opposed to it being, you couldn't decide. That's awesome. Good. Okay, so we've talked about the financial implications in tip one. We've talked about doing your homework in tip two. You have to do your homework to really understand the financial implications, because unless you know what the services are provided in each of these options and the price of each of these options, you can't possibly do a proper financial evaluation. And we're going to talk a little bit more about that in tip three, because some of tip three, particularly if you choose to stay at home, there's financial implications there. So we're going to talk about home safety. We're going to talk about medical need, medical requirements, and we're going to talk about the well-being of the care receiver and the caregiver. So let's go on to tip three, which is assessing to a thorough assessment of home safety. So we're starting here with suggesting that you get an updated medical evaluation, a meeting with the doctor where you go through, get an updated medical evaluation, talk about your loved ones, home safety risks now and in the near future from the medical perspective. This is also going to come into play when we talk about assessing their medical needs. So this same visit is going to help you with tip three and tip four. But the idea here is to get a flavor for what's coming so you can start to evaluate what you might need to do to modify your home if you think you're going to keep them there. One of the first things that you can also do is ask your physician in that meeting in the U.S. to give you a prescription for occupational therapy. And an occupational therapy is part of social services and they will come to your house at no charge and evaluate your home safety based on your care receiver's current needs and near term needs. Now they're going to look at things like the risk of wandering. Do you need safety latches on your cabinets? Do you need them on your doors? What's the mobility risk for this person? What's their mobility challenges and is your home set up to support that? What about falling? Do you have fall risk in your home? How do you minimize the risk of fall? Something to think about there. Sue and I have talked about this a lot if you've listened to other podcasts from us. But there's a definite risk or consistent risk with dementia in terms of depth perception. So do you have stairs and are stairs required for your loved one to actually live in the home? Either because of where their bedroom is or you'll hear in a minute from Sue about their home situation because stairs eventually will not be practical. That really truly was an inflection point. That was a go-no-go decision that was a part of what we were doing for choosing whether Jack would stay at home or go into a care community. We live on a condo that's two stories. The bottom level is not the living level. So in order to get to the area where we lived, we had to go up the stairs or go up an elevator. The elevator was not sustainable because of their fear of being closed in. The stairs, because of the depth perception and shadows, were not sustainable. So in order to keep him at home, it was going to become very challenging. One of the pieces of it was not just the fact that there were stairs, but it's the consideration. This is huge. Emergency service considerations of getting him in and out. If I had a fire upstairs, I wouldn't be able to get him out. So there are considerations that we have for components of the home that are really important to evaluate. Sue and I discussed home safety in a lot of detail in episode 7. I would suggest you go listen to that episode because it is purely about home safety. It really covers all the things that you need to consider, including some of this emergency services stuff. It's a good episode for that. Now, one of the other things when it comes to home safety is we've talked up till now about home safety for the care receiver. But what is the challenge or is there a home safety challenge for the caregiver? Aggression is a pretty common challenge with people with dementia. I had it, Sue had it. If you're the primary caregiver, you do have to decide at some point what is your safety level in this situation. That is often an inflection point. It was with me. My husband was going through the real aggression stage. There was a lot of conversations with my closest friends about was this the time to move him to a care community. It definitely is an inflection point you have to think through. It was a big inflection point for us as well because I called it when Jack would go into his dementia moments. And the same thing with my dad is that they were physically there, but you could tell they weren't there. They were in a dementia moment. They didn't recognize you. And so where you would normally think, for example, my dad would never lift a finger to hurt Harmy or Jack would never lift a finger to Harmy. When they're a dementia moment, you are someone who at times they considered me a threat to them. And so can you keep yourself safe? And it's your loved one. You don't ever want to have to think about that. This is why, to your point, Nancy, about talking this over with others, it's that you might feel like you should be able to handle this. Get some other input. I love that. I mean, that's true because these are all decisions that, frankly, they're difficult decisions and it's too much for one person to have to decide on their own. Yes. All right. So here we're going to try to decide in tip three, which is around home safety, is what's the safety, what are the safety implications for me and my care receiver at home versus moving them into a care community? Now, some of the things we did in tip three, we're going to leverage in tip four. So, Sue, why don't you jump in? Right. Tip four, we were talking about getting a medical assessment in tip three. And tip four, we're talking about assessing their current and future medical needs. And when we do this, it's not just for the dementia diagnosis. This is for all of the things that go into different medical diagnoses they have going on, which is why us having as much detailed information about all of that in every area of their health that we can to provide is really helpful. For example, there may be a diagnosis that the care for that is complicated by the diagnosis of dementia. And Nancy, just to really bring this home, you've got such a perfect example of that. I do have a perfect example of that. There was a point where my father-in-law went into the emergency room and had to stay in the hospital for a couple of days. And so he had to have a Foley catheter, which is an external catheter. We brought him home and he had no idea what it was. And 12 hours, within the first 12 hours, he had pulled it out, which is very dangerous. There were some things he did that caused it not to be dangerous. Thank goodness, unknowingly. Very dangerous. And we realized he can't have a Foley catheter without 24-hour care. 24-hour at home care is very expensive. And so we knew that was going to cause us...that was an inflection point. Now, we knew that he was going to have a doctor's appointment within two weeks and we're going to wait until that two weeks was up and see if he could live without the Foley cath if he could. Then we would keep him at home longer. Well, he did. He was able to get out of the Foley cath and we were able to keep him at home. Well, towards the end, this happened again. And he had to have a Foley catheter again. And this time, at least we knew, he's going to have 24-hour care the moment he has that Foley catheter. Now, we knew this was another inflection point. He only lived for about eight days after that. So it did not end up causing us to have to make a different living situation decision. But it would have if this had continued long term because we could not manage it. In addition to the purely medical needs, it's on our side as well. When we're looking at what their current and anticipated future medical needs, are we going to be able to handle it? For example, mobility considerations, incontinence support, mood swings, and other medical needs beyond dementia. Does there come a point in time where we're no longer qualified to be the person to provide that level of care? Right. Okay. So we've gone through four good tips. I think the last tip might be the most important one. We started with the one that is a good go-no-go with financial. But now we're at the end, which is really about understanding the well-being and what's required for that for the care receiver and the caregiver both. So that's tip five. So why don't you get us rolling? And when we talk about prioritizing it, it really is. It's not an either or it is definitely a both and. This is one of the reasons why we said in the very beginning, don't go alone. Continuously evaluate it and have go-no-go decisions and look at the inflection points. When we're talking about prioritizing these things, a big part of it is socialization. And it's socialization for our care receiver and also socialization for us. When we look at the socialization for our care receivers, for example, with their different journeys, they have different levels of comfort or discomfort. And I'll use several examples from my side. Our grandmother, for example, was completely comfortable at home in a quieter environment without a lot of external social stimulation. In fact, that was very agitating to her. It was the exact opposite of what you might anticipate. With my dad, we found that while home was very comforting for him, when he was around the stimulation of a social community, it improved his mood, that he enjoyed it. He didn't prefer a lot of stimulation. And so it was kind of when he moved into the community, he wasn't involved in all of the activities, but he had more social interaction. And then at the far end of the spectrum is my husband's very, very social. And so on the my side of it, it became harder and harder for me to get him the amount of social stimulation that was helpful for him. And so these alternative choices we've talked about with the respite care program, he loved that, the stimulation of that. When we found the day program, he loved that part-time aspect of it and in the preparation for it. And it helped me know that moving him into a care community was going to give him that level of socialization that really helped him thrive. And so when we talk about that, it's understanding both for us, because one of the challenges for caregivers is that there's more and more isolation. We're prioritizing the care of our loved one. They need more of our time and our emotions. And so we ultimately end up not having as much personal socialization and this impacts our moods as well. On the side of isolation for the care receiver, one of the things that was really valuable for me when we were working with Jack's care to be in the respite programs of the senior centers and the day programs to give him the social stimulation, is it gave me the opportunity to get out and to increase my level of socialization. So there are a variety of different reasons why these are very, very healthy. And as we're observing our care receivers needs for socialization, be aware of yours. And this is another reason, don't go it alone. Have accountability partners. Have your friends, like, hey, you look like you're not as happy as you used to be. And let's go have lunch and helping us notice as well. So at any rate, it's looking at the socialization and the needs for our care receivers as well as for us, for these different options. And on the other hand, my husband had frontal temporal dementia, and specifically primary progressive aphasia, which is a language forward kind of dementia. And so he really is very was a very social person, but he was very frustrated in social environments because people didn't understand what he was saying. And so it was very difficult for him to socialize. And so we didn't leverage any of these day programs, which is unfortunate because he would he really was a very social person and probably would have enjoyed something like that. My father-in-law was was actually really enjoyed the social aspects when we would come to the house and have a birthday party or people would come visit. He lit up. He loved that. And I would say we probably did not do him justice, even though he stayed at home as well to the end. We did not do the socialization part of his journey justice as we should have because he really did enjoy socializing. And I would say we left that that definitely was not our strongest part of his care. So use leverage the programs. I know Sue, before you even leverage the programs, you did a good job of scheduling people on a regular basis to come to the house and visit. I mean, you really fed Jack's social, you know, desires, if you will. I did. I kept him at home for as long as I could. We stayed at home for a number of years until really the inflection point, the go no go of his safety. Yeah. Yeah. All right. So we've talked about, you know, at home, some people feel home is more familiar. It's easier for them to get to the bathroom and the bedroom and the things that are more familiar to them. But there's also the consideration of you as the care receiver. And we've hinted to this already. Caregiving, particularly as things progress in the diagnosis can be very, very challenging, both physically and emotionally. So when we talk about go no go decisions, when it comes to the well-being of the care receiver and the caregiver, you want to think through what's happening with you as well. What's your inflection point? Do you have a boundary that is getting ready to be cost maybe within continents? Is aggression an inflection point and it's out of control and you don't feel safe anymore? Are you so physically and emotionally exhausted that you're not being a good caregiver anymore for your care receiver? So those are inflection points too that need to be considered when you're thinking through this decision. So tell us a little bit about really what finally packaged up a decision for you with Jack. I think people would be interested to hear. All right. As I mentioned, I kept him at home for as long as I possibly could. So we stayed at home for many of the years of his journey. And what I continuously evaluated is what was helping him thrive the most. So I did leverage the different programs we're talking about. I leveraged a senior center respite care program and found what he just thrived in. And then I evaluated the day centers both for the kind of program that would be healthy for him. And then as a kind of a stopgap measurement of the communities he might be considering going in if I chose to go that way. And that when I realized I couldn't help him thrive and I also couldn't keep him safe. And that was my number one choice was keeping him safe. And my number two choice was keeping me safe. So I wanted to keep him safe and happy and keep me safe and happy. And it became the option, the number one option for him was to move him into a community, which just like yours was that it didn't need to go to that direction. I didn't have an option when I explored all the different considerations. And I didn't make that decision in a vacuum. We made it as a family and we talked through it and everyone agreed this was the wisest choice. And when you think about that, when you're making your decision, it's evaluate several things like let's summarize here. It's what is the wisest choice for our care receiver? What's the wisest choice for us? And health and safety are very important with those. And then what program or programs today can support our needs as well as their needs in the best possible ways and then continuously evaluate and evaluate and evaluate. I felt very comfortable keeping him at home for a long time. And then when it wasn't right, I already had his name on a waiting list in a care community. And I had already had him experience being in their daycare program. So I already knew what it was. So when the choice came to move him in, it was a very quick decision. We were able to take action pretty quickly. That's awesome. And to give the other side of the equation, I kept my husband and my father-in-law at home through their entire journeys. But don't think I wasn't keeping up with the care communities. I didn't understand what the options were. I didn't make sure they know who I was. I stayed very connected to the options through the entire journey. So I always could fall back on that option if I felt like the inflection point called for it. And that was what it would take for him to thrive. So, you know, this all ends up with being what Sue said. It is a constant evaluation. Leverage those inflection points. Check yourself when one of those happens and say, maybe I should go back through my evaluation again and think through where we are in terms of living situation. One thing I'll reinforce with that. My journey was so much different because we had an elder care attorney. I have talked to people who had chosen not to get one. And I promise you, if you have not considered an elder care attorney, it was transformational in our journey. That's awesome. That is awesome. So good. So it's such good advice. So in this episode, we talked about things to consider when you're in that situation where you're thinking, I think it's time to evaluate my care receivers living situation. We shared five tips. The first one was consider the current and future financial resources that you have. The second one was evaluate all your options. Visit care communities. Meet with professional caregivers. Understand what the cost are and what the services are for all those options. Third one, do a thorough assessment of home safety. Fourth one, assess their medical needs now and in the near future. And the fifth one is prioritize the quality of life for both you and your care receiver. You are both part of this equation and part of this decision. Now, if you have tips that you think will help people in this moment, please share them on our Facebook page or our Instagram page. The links are in the show notes. Anything we feel like you need to know more about is also in the show notes product wise or service wise. And if you like this podcast, please follow it or subscribe to it. Please rate it and review it. We really, really appreciate it. We know this is a particularly difficult and sensitive topic. And we want to make sure that you think it all the way through as both Sue and I did. We're all on this journey together. Yes, we are.