What You Should Know About Dementia
00:00 Monica: Hey, Mary. Hey, Eileen.
00:01 Mary: Good morning.
00:02 Eileen: Morning.
00:03 Monica: Good morning. Welcome to Alzheimer’s Awareness Month. What could be more pertinent than it is to our industry and our organisation, A Right Place for Seniors, and we’re assuming there are some people that are joining us today that aren’t familiar with us. So one of the things I thought I’d start with today in our little round table conversation is talking a bit about how we got into this. Before I do that, Mary, you’re on the big screen, wave. Mary is my business partner, and Eileen is our associate who works in the North County for A Right Place for Seniors in San Diego.
00:42 Monica: So this is a topic that’s near and dear to my heart, and the reason I got involved in A Right Place for Seniors is ’cause my mother had Alzheimer’s. And I, over a 16-year period, monitored her care remotely, lived with her for a minute, and then had her live with me for a few years, and then from there, she actually did go into placement into a small assisted living and then into board and care. But before all that happened, I had bad placement experiences, so that’s why I got involved with placement. Mary approached me about starting this business, and it was really important to me that I get involved in an organisation that made sure this was done right. So that’s how I landed here.
01:21 Monica: And so for those of you who aren’t familiar with A Right Place for Seniors or placement agencies in general, that is exactly what we are. We’re a placement agency for seniors and/or seniors’ families to look to us for expertise in helping place their family member into an assisted living or a board and care situation, or independent living on some occasion, but typically it’s assisted living and board and care. And so there are, in San Diego County, about 400 board and cares and 250 assisted living. So as you can imagine, it would be almost impossible for somebody to go out and touch all of those locations to get an appropriate fit for their parent or for the individual senior who’s in their 80s, they don’t have the stamina to do something like that. So people look to us and we have relationships with many, many, many, many, many, many of these locations. If we don’t have a relationship with them and we think it’s a good fit, we’ll establish a relationship, do the tour and make sure that we find the right fit for your family.
02:24 Monica: We’re a free service, it doesn’t cost families anything you use us. We love that part of it, it’s one of my favourites. And how we get paid, we always like people to know upfront, is from the referral fee, it’s like a thank you fee from the location where we end up putting a senior. And so we wanted to talk a little bit today about dementia and how about 80% of our clients probably are dementia. That doesn’t keep people from… Who don’t have dementia, using us, believe me, and we get a lot of that, but oftentimes, dementia can be a little trickier placement because it’s not a one-size-fits-all for people that have dementia. And so that’s why it’s important to go through a placement agency where we do our upfront work, do all the research, all of the locating, the touring, pre-touring before we’d even tour our families, and then from there, we try to narrow it down to the few locations, three, maybe four. And then we keep it really tight, so that the family only has to decide between three or four locations, that we find are an appropriate fit. So from there, I wanted to introduce Mary again, Mary Golden is my business partner, and ask Mary some of the situations as we’re talking about dementia. What are some of the things that you found in our placement that are really important for people to know?
03:44 Mary: Well, first, I just wanted to say, I spoke with a woman yesterday, who called who saw 45 places the last time she placed her father, and I’ve never heard of somebody going to 45 places before. But she was very proud of the fact that she did that. On the other hand, she ended up with a placement that wasn’t very good ultimately. So I can’t stress enough how we can help to really hone in on the appropriate kind of placement, specifically dementia comes in just a lot of different shapes and sizes, like Monica mentioned, it’s not a one-size-fits-all type of placement. Dementia could be something that is defined as a mild cognitive impairment that frequently is associated with aging, but it could also be something like a Alzheimer’s disease, Lewy bodies dementia, or Parkinson’s disease dementia, which comes with kinds of difficult… Can come with all kinds of difficulties, and especially when there’s behaviours that are not socially appropriate type behaviours that come along with those changes in the brain.
05:04 Mary: It can make the resulting placement really difficult and expensive. There’s only a few facilities that’d really take people that have severe disabilities with regards to their behaviour. So we know those things and we can really help with that. But the first thing to really do when you’re trying to determine what it is you need for your loved one [05:33] __ that has to go and you have to get a core understanding of what that diagnosis is. It’s important to see the right professionals to do that. Medication management becomes a very important aspect of treating this disease. They really don’t know how else to manage it except medications and behavioural techniques in the facility. So getting the kind of support you need as a family to understand what you’re up against, sometimes these kinds of… This cognitive process takes place in over a long period of time, with very slow onset, sometimes it’s very rapid, and just sidelines the family and it keeps changing, and it gets more and more difficult to manage over time.
06:28 Mary: Having as much information as you can and we can help you with resources, too. Placement isn’t always the best option right off the bat, it might be ultimately, but it may not be in the beginning, so we can help steer you in the right direction in getting the resources and support you need as a family, as a spouse, as a daughter or son, or whoever it is that’s caretaking. Home care could be helpful. It’s also quite expensive so that you need to know those kinds of things too.
06:58 Mary: When we start working with the client, the first thing we do is we… Now, it’s a little different right now, because of COVID, so we might do a Zoom, a meeting with you and your family, but typically, we do an assessment. When we go out, we meet your parent or your loved one and we determine what it is that… We see it firsthand what it is we’re dealing with. And we also meet with you and kind of go through parameters that allow us to determine what the needs are. We also…
07:31 Mary: The other thing that’s really important is budget, financial issues or financial constraints, they’re a main part of this thing, everything is, costs money. But taking things one step at a time on your journey, you can’t really rush out there and make decision long-term, sometimes these things go on for years and years, and your first placement may not be your last and that needs to be understood as well. So it’s important to know your options, get the support you need, and understand that this is a journey that we can help you on along the way.
08:17 Monica: Yeah, that’s important stuff. Eileen, what has been your experience when you’re doing your placements up there? I know you cover the North County pretty extensively, run into lots of different families, with lots of different situations. What do you feel are important things for people to know when you’re looking to place somebody with dementia or dealing with it at home?
08:38 Eileen: Well, one of the things that I’ve had a run on this spring was families that haven’t had conversations and… What are your wishes as you get older? Haven’t shared it with their spouse or their children or their loved ones, it’s like, what’s going on at that moment when you’re in crisis is not the time to have those conversations. And then behind that is the paperwork. So Mary is talking about having the proper diagnosis, ’cause then along with that is all the paperwork that needs to happen, and one of the things with the paperwork is the Power of Attorney for healthcare, and durable power attorney, and then also your finances and your will and your trust… And so often I run into like, “Well, my parents have never shared their finances,” their parents keep that all closed in for whatever family reasons, but then how do you sort this?
09:33 Eileen: I just recently had a very good friend of mine whose husband’s going into heart surgery, at 36 hours beforehand, she’s calling me in a panic because they’ve never done any paperwork, and I’ve talked to her about this for years. He’s in his 80s and here they are. So this is with dementia or anything but it’s one of the questions we ask, too. Have you had this done? We don’t help with that, but again, we give resources and help you make sure that you’ve got all the proper things in order. And so that’s really critical ’cause the problem is when you don’t share your wishes and your family doesn’t know what you want, then they’re left with… The doctor is gonna make the decision, “I think my mum wants this”, there’s so much angst, there’s so much cost that goes into if you have to do conservatorship, if the dementia is far enough along where they’re not able to make these decisions for themselves, and there’s no paperwork, they’re stuck.
10:30 Eileen: So there’s a lot of pain that goes into this: Financial pain, emotional pain, fighting between family members about what they think they should do, not do, because they don’t know the wishes of their loved one. And those consequences just pay such high prices. So I tell everybody get the paperwork done as soon as possible. When we’re working with the kids, so they’re in their 40s, 50s, 60s for helping their parents, I’m like, “Do you have yours done?” It’s like, “Why don’t you all sit down and have this conversation, and you should be having it with your children too,” none of us knows, car accident, this or that, what could happen, we should all get that paperwork done. It’s so easy to put off, put off, put off and just even watching my dear friend go through this angst in this last week, with not having she said, “I’ll never let this happen again.” And it’s so hard to not have those conversations and those decisions made.
11:29 Monica: Yeah. Lots of unintended consequences when you move into illness, whether it be dementia or just general aging and decline, that people aren’t doing, properly prepared. One thing that I wanted to mention that I think is really important, and it’s a little bit hard to talk about and that is, as you’re looking for placement, especially for someone that has dementia, people have this tendency to, obviously, we’re gonna look for the right location. That’s a no-brainer. We’ll dwindle it down to a few choices that we think are good.
12:04 Monica: One of the first things we do is cost, “What’s your budget?” and the next thing is “What location do you want?” and oftentimes people are picking something that’s close to their home because they think they’re gonna go visit their loved one all the time. Now, if it’s a spouse or a mother, father, and they know they’re gonna see them every day or five days a week, I think proximity to your home is super important, because I know it was for me when I placed my mother, she was five minutes from our office, Mary, not even five minutes from her office, and probably 10 minutes from my house. And I saw her five, six days a week.
12:35 Monica: But for those who are gonna make a commitment to do that and they don’t, and then they sometimes pick a place that’s close to their home and it’s really not the best fit and the main reason they picked it was proximity, closest to them, easiest for them, but it may not have been the best fit for their parent of the three that we gave them and that’s happened to us a few times. We say we think this place is a better fit, now I had one out in East County that was a perfect fit for the mother. They left her in assisted living. Remember that one, Mary?
13:01 Mary: Yeah.
13:02 Monica: Assisted living for four months until an opening came up to a board and care home that was just blocks from them. And the mother went into decline for those four months she was in the assisted living, ’cause they didn’t wanna drive that far to visit her. And so I think it’s really important for people to realise that every fit, every facility, especially for dementia, isn’t a fit for every person. We’re not doctors, we’re not psychologists, we’re not experts. But you should get into talking to people about, “What do you think would be a good fit for my mum?” If it’s a really busy place but it’s close to you and you think it’d be great for her and it turns out not to be, then the unintended consequence of that is you have to move her. Because sometimes they can have behaviours, sometimes they’ll act out, sometimes they’ll get aggressive to staff or others at the location, because you didn’t pick the right place for them, you picked the most convenient place for you to put them. So I think it’s really important for people to pick a facility that’s the best fit, and even if it’s a little farther, you have to drive 10 more minutes…
14:04 Monica: I ended up having to move my mum from a small assisted living when she was starting to go into a decline, ’cause it had some stairs and some challenges, to a ranch home down in the Chula Vista area, which was a much better fit for my mother as she got along in her dementia. And it had nothing to do with care and everything to do with the physical layout of the location, ’cause she’d had numerous falls at the small assisted living, and she did really well at this ranch style in Chula Vista because she had flat, no steps, no challenges physically that she had to manage. And yes, it was a little further drive for me. I probably ended up going to see four or five days a week instead of five or six days a week, but that’s okay, she got really good care and that was a better fit for her. So I always wanna caution people not to pick something just because you think it’s pretty or it’s convenient for you. Really look at, with us, at what we recommend for their particular situation would maybe be a better fit.
15:03 Mary: There’s ways to look at this that aren’t… It’s not static, it’s something that you can [15:10] __ duke out over time. Because like I was saying in the beginning, it’s a journey.
15:14 Monica: Yeah, it is.
15:15 Eileen: That’s a good point.
15:18 Monica: It is a good point.
15:21 Eileen: Yeah. That’s a great conversation that I think we have, too, with helping people. And again, placement agencies will help you look at all of that. What’s the budget? How long do we need to make that budget last? Is there a point when you need to look at other kinds of financial support or services? There’s a lot to look at that we walk people through.
15:40 Monica: And I know we wanted to keep our time short on this one, maybe our next topic can be sharing with people the difference between assisted living and board and care, and we can talk about this versus that. Not necessarily one better than the other, in terms of overall care, but for your particular parent or your senior, one might be a better fit than the other, and there’s a lot to it. So maybe we can do that next time.
16:04 Eileen: Great.
16:05 Monica: Great. You guys have any closing remarks? I’m finished with mine.
16:10 Eileen: No, I think just really letting people know that we’re here to help you. We cover San Diego County, and we walk side by side with you through this. Some agencies will hand you a list, like Mary was saying, somebody saw 45 homes on their own, I can’t even imagine. We’re familiar with all of these and we know the right questions to ask and the things to ask about, and we can help you negotiate things and look for hidden costs. And when people find us, after they’ve worked with us, they’re like, “How did I ever do this without you?” And that’s the point. And again, like Monica said at the beginning, no charge to you. We work with those communities.
16:53 Monica: Yeah. Well, thank you for your time, everyone and I think it was a fruitful discussion, I hope it was helpful to our viewers.
17:03 Mary: Yeah, sounds great.
17:04 Monica: Okay, see you guys next time. Alright, bye bye.