Aging in Place #208

Chris Delenick:

People with a disability are faced with one of the last remaining areas of discrimination and it may not be overt. It's been 25 years since the ADA came into law. Almost July 26th is the anniversary, but we're still struggling with that.

Jill Johanning:

People with disabilities are actually the largest minority population, larger than Hispanics or other cultures. And it's also the only minority where any one of us can become a member of. This could be me or someone I love tomorrow. So it does impact all of us.

Kate Adams:

Personally, I got in because I love helping people. I mean, that sounds kind of cliche, but I do love solving problems for people, providing support for people, and I'm a firm believer that if people want to stay home as they get older, they should be able to. And families are so busy right now that there needs to be other support, other services that can allow that to happen.

Dr. Lisa Belisle:

This is Dr. Lisa Belisle. You are listening to LoveMain radio show number 208, Aging in Place, airing for the first time on Sunday, September 6, 2015. How do we help older people continue to live fulfilling and productive lives? As a state with a rapidly aging population, Mainers are working to answer this question. Today we explore the special needs of older individuals and other individuals who are differently abled. With Jill Johanning and Chris Delennick of Alpha One. We also speak with Kate Adams of Aging Excellence, a non medical in home care agency that helps older people age in place. Thank you for joining us. As part of being a doctor, I am privileged to spend time with families who are dealing with pretty major life circumstances and one of these is aging. In fact, I spend a lot of time with families who are caring for elderly parents and what is wonderful is to see when it works out so that people are able to age in place and age in the homes that perhaps they've lived in all of their lives because it seems to have a very positive impact on their health. However, I'm not sure that as a society, we're quite sure how to deal with this yet. So today we're going to speak with two individuals who I think have some good ideas for us. We have Jill Johanning and Chris Delennick, who are from Alpha One. Jill is a main licensed architect who specializes in accessible and universal design. And Chris is an occupational therapist and an independent living specialist. So great to have you in here to have this conversation with me today.

Chris Delenick:

Thanks for the opportunity.

Jill Johanning:

Thank you for having us.

Dr. Lisa Belisle:

So I'm interested in why it is that this would become your field. It seems like, I mean, we obviously, Maine has one of the oldest populations in the nation, and we are all going to get to the place where we are needing the services that you're providing. But why did each of you choose to focus on this?

Chris Delenick:

Well, for me, it was, I think, similar to what a lot of people experience in the disability arena. It was personal. I was in a car accident when I was young, 8th grade, and had to do some rehabilitation and really was interested in what the physical and occupational therapists were doing. Did a lot of volunteer work, that local hospital, and really kind of latched on to occupational therapy as something that I saw a lot of potential in. So that was my entree into the occupational therapy world.

Dr. Lisa Belisle:

Hmm. And how about you, Jill?

Jill Johanning:

I actually came home to Maine my first summer from college and wanted to do something different. Got involved with Pine Tree Camp, which is a camp for people with disabilities. And I just haven't left since. I'm just seeing the need that we have in the architectural environment to make the facilities accessible for everyone. It's just been something that I fell in love with and kept on doing it.

Dr. Lisa Belisle:

So describe for people who are listening what Alpha 1 is.

Chris Delenick:

That's a very good question. Alpha 1 is Maine's center for Independent Living. So Centers for Independent Living are in every state. Most states have multiple. We have one. Alpha one serves consumers in South Portland, Bangor, and Presque Isle through the offices, but we cover the entire state. And we're really focused on increasing the independence and enriching the lives of people with disabilities.

Dr. Lisa Belisle:

And so when we're talking about aging in place, this becomes relevant to the whole disability idea, because we're all at various stages of ability or disability over the courses of our lives. And it's not just because of aging. It's because of things that might have happened or things we might have been born with and you're really, you're just trying to make it possible for people to live their lives.

Chris Delenick:

I think one of the key things that we look at is the dignity of risk. So the same opportunities and the same circumstances that someone who does not have a disability is provided or afforded, extending that to people who do have a disability to make the same choices to live their lives as independently as you

Dr. Lisa Belisle:

or I. Jill, as an architect, what types of things are you able to offer to people so that they can live independently in their homes or even live with perhaps other family members in their homes, no matter what age they might be or what their ability levels might be?

Jill Johanning:

I hope what I bring is choices and options. A lot of times people think that they only have one option to do this or that to their home based on what their budgets are. We try to give them different choices to let them make the decisions of what's going to be best for them. Everybody's different, every home is different. And just helping them brainstorm ideas and let them know what products and resources are available so they can make those choices. Whether it's today or tomorrow or in the future, they know what's out there, what's there for help.

Dr. Lisa Belisle:

So when I'm thinking of things that people might need, I'm thinking of ways, for example, to get into their house. Like a wheelchair ramp perhaps, or even not just a wheelchair ramp, but just a ramp. Because sometimes stairs are difficult. Or I'm thinking about handles on doors that can be opened by people who aren't quite as strong. But there also may be larger architectural and structural things that need to happen. Widened doorways or cheap changes in the layout of a room. Talk to me more about that.

Jill Johanning:

Right. And that comes back to budget again. Looking at doorways, for example, if there's space, the cheapest option is just to switch the hinges to something called offset hinges or swing away hinges. If you just need an extra inch or two, just to help get a little more space for rolaid or wheelchair, that's the cheapest, easiest thing that anybody can do. And then if that doesn't work because of space or the door is just too small, then that's where widening the door, having a contractor come in and actually take the trim off, you know, a little bit more cost, but it's going to get you a little bit more space. So things like that we look at based on what's existing for the home, how old it is, and then choosing. Do you want to. Can you afford to do just the hinges or can you Afford to do the whole door frame. So people have that choice to say let's try it with just the hinges or let's get a carpenter in here and actually fix the door, for example.

Dr. Lisa Belisle:

And so what are some of the other things that people need to consider when you're talking about someone who has a disability or perhaps somebody who is aged and just has more generalized weakness or some sort of medical issue?

Jill Johanning:

Yeah, after. I mean the priorities getting into the home or getting in and out, you already mentioned with a ramp getting through the doors. And then the bathroom is really the place where most accidents happen and where everybody should have the choice to go to the bathroom, bathe themselves safely, comfortably. So that's the biggest challenge is the bathroom. Because typically main old homes are small, tiny, not very friendly, may not even

Chris Delenick:

have a full bathroom on the first floor if it's a multi floor house. Bathrooms is where we see a lot of requests for help in terms of looking at design, looking at layout, looking at equipment that might increase independence.

Jill Johanning:

Changing the tub to a shower, changing the toilet.

Kate Adams:

Right.

Chris Delenick:

And ideally replacing a tub with a shower that is as close to a zero threshold as possible. So not even a lip. So if someone had to use a device that needed to roll in that, you know, that quarter of an inch, which a lot of bathtubs and, or sorry, shower floors have, can be a barrier. So we look at having as close to zero as possible.

Dr. Lisa Belisle:

Chris, I'm interested in the work that you do because I have patients who come in who are of various ages but tend to be older, who fall and maybe they trip on a rug, maybe they trip on a threshold, or maybe they're just unsteady in general. And I know that one of the things that we often will do is to have someone go into the home, physical therapy therapist, occupational therapist, to evaluate or why it is that this person is falling. Because falls present an enormous risk for people who are old. If you have a fall, you could break a hip. If you break a hip, end up in the hospital. It's not just, it's not a simple bone break, it's really a life altering event. So talk to me a little bit about the work that you do as an occupational therapist in this area.

Chris Delenick:

So as an ot, I go into when I'm invited into someone's home to look at the home environment, first and foremost looking at what will be able to be done to increase the person's level of independence to stay in the home as long as possible, with the caveat of as safely as possible. So I make recommendations. You know, Joel alluded to and mentioned choice earlier, and that's a lot of what I do as well is offering a consumer, an individual who has a disability. Here are some choices that you can make that will potentially increase the safety of your environment. Things like taking up throw rugs. If you have throw rugs, if you have cords going across the floor, getting those out of the way. A lot of consumers who have a lower visions, the transition from one room to the next can be tough. So if there's a bit of a lip or if there's a threshold, if that can't be removed, structurally demarcating that clearly with some high contrast. So installing some equipment in the bathroom to make it safer, chair to sit down in the shower, in the tub, if you have a chair to sit down, grab bars, hire toilet seat. But again, making recommendations. And then it is ultimately up to the person with a disability and their family to decide what they'd like to move forward on.

Dr. Lisa Belisle:

I think it might surprise people what barriers actually do exist out in the environment in general, but even in the home. I know that when I spent three months on crutches after a knee injury, that's just crutches and that was just short term. So, you know, in no way am I saying that I have any understanding of what it's like to have a longer term disability. But there are a lot of things that people don't realize make life very challenging. So what are some of the top things that people come to you with? I mean, you've mentioned some very specific things. Bathrooms and thresholds and getting in and out of the house. What are some of the things that really keep people from being able to access bigger lives

Chris Delenick:

inside the home or out? Because I think inside the home, getting in and out is a huge barrier. Joe mentioned the ramp. If you can't do stairs anymore, or if the bedroom and bathroom are upstairs. Getting upstairs or coming up with an alternative solution on the first floor, if that's feasible. Kitchen can sometimes be an issue as well. So if people want to do and can do things like meal preparation and enjoy the cooking, then looking at the kitchen outside the community brings us outside the home, I think brings a host of other issues.

Dr. Lisa Belisle:

And is this something that both of you deal with or I guess, Jill, if you're an architect, it might be a little bit more difficult to be effecting change in the greater environment. But maybe I'm wrong.

Jill Johanning:

When it comes to private residences, that's harder. But we deal a lot with public accommodations in the communities and advocating for better awareness and access. This year is the 25th anniversary of the Americans with Disabilities Act. I'm just trying to remind people that it's been 25 years that this law has been around to make sure that their businesses are accessible and that if they have an historic or old building, that they still have obligations to do to make sure that people that are aging can come, continue to do their shopping, do their business, that they're not limited, that they can't go out to dinner with their friends and family because they can't get into the building. So there's plenty that we have to do in the buildings to make sure that people who are aging at their home can still go out in the community and access services and activities and be engaged and continue their active lifestyle. So it does go beyond the home? Absolutely.

Dr. Lisa Belisle:

So if I was a business owner and I wanted to get some suggestions as to how to make my establishment more accessible, could I go to Alpha 1 and get some suggestions?

Jill Johanning:

Yes, that is another thing that we offer is we are the main affiliate of the New England ADA center, so we offer free ADA technical assistance for businesses as part of the ADA National Network. There are tax incentives out there that businesses can use to remove barriers to make their business successful. There are checklists, guides. We have lots of free resources that we can help people with.

Dr. Lisa Belisle:

So I know, Chris, that you were talking about your experience when you were in eighth grade and how this focused your life in a certain way as an occupational therapist. Jill, when you were working at the Pine Tree Camp, did you have specific. Do you have specific memories of things that really caused you to want to focus on this area?

Jill Johanning:

I think it was my involvement at the camp, where the camp itself is very accessible to everybody, not just the physical environment, but also the attitudes that all the staff there, you know, don't see any barriers, that if someone has a disability, they can do everything. And then when we'd go on field trips and go outside of camp with different people with different mobility devices, all kinds of disabilities, and just the challenges that I saw trying to help them go out to restaurants or go to parks or ball games, seeing the disconnect between the two and the need to make more communities accessible is what stayed with me and why I continue to do what I do.

Dr. Lisa Belisle:

Chris, I'm interested in your background because you came here from Burlington because your wife was a resident in internal medicine. She was a hospitalist, and now she's working as an internal medicine specialist. But she must work with a largely elderly Population. Do you have conversations at the dinner table that have proven to be interesting, useful in your occupation?

Chris Delenick:

We have, you know, keeping all the HIPAA guidelines.

Dr. Lisa Belisle:

Of course, I don't mean patient specifics,

Chris Delenick:

but speaking generally, yeah, we have, we really have. And certainly my work at Alpha 1 has really come to the forefront and brought some things that as an occupational therapist with experience working in an acute care, the hospital, or an acute rehabilitation setting, I really wasn't aware of, or maybe was aware of, but not to the level that I am working at@alpha1. But yeah, we've had a lot of conversations about some of the barriers that face Mainers with disability.

Dr. Lisa Belisle:

I was thinking back to this past winter and patients that I have who are wheelchair bound or maybe use walkers or even are just a little older and have difficulty navigating things like ice and snow. And I would think that would provide a special challenge to people when we're not having beautiful summer weather. What can you do to help? As people who are working with Alpha

Kate Adams:

One,

Chris Delenick:

I think in the community it's increasing awareness. So in general, this winter was pretty rough and the sidewalks were passable by foot. Mostly if you were using a wheelchair, if you were using an assisted device for walking, it was pretty treacherous. So just increasing awareness of local businesses and the community at large that when we're looking at snow removal or sidewalk maintenance, that we have to look at an area beyond what somebody who's not using a device needs, but the needs of everyone who's using the street. And even in the summertime when there aren't necessarily four foot piles of snow piled up on the sidewalk, that's when you typically see sidewalk cafes sprout up and tables come out and sandwich boards being placed, which again, if you don't need or don't use a mobility device, doesn't present a challenge. But if you do, it can really be a challenge.

Dr. Lisa Belisle:

Yeah, that's a really interesting point because I'm thinking about just this need to share space. So if you are a walker, a runner, a biker, someone who's in a car, but then you add in also people who need a mobility device, that's a lot of kind of trying to orient yourself around other people. And I think it's important to have some mindfulness because if you're just not paying attention, then you're likely to miss somebody who's maybe in a wheelchair and can't get up a curb or something like that. So is that another thing that people talk about at Alpha 1 is just the idea to be Aware of our fellow human beings and patient,

Jill Johanning:

yes, not only mobility devices, but also people, vision loss and what we can do to help our neighbors. Because it is a whole network support, whether it's the trash cans, trash bags on the sidewalk, or trimming your bushes. So that way people who can't see don't poke their eyes or scratch their head. Little things that, yes, we take for granted until it impacts us personally. And then you see it, and once it turns on, you can't turn it off.

Chris Delenick:

That's a fantastic point. Once you have some kind of personal experience, whether it's yourself, a family member, a friend who's had to deal with or had to go through a day with a disability or with a limitation, you really do have your eyes opened and you can't unsee some of those things. What has been frustrating is, again, this is just my opinion, but I think by and large people with a disability are faced with one of the last remaining areas of discrimination. And it may not be overt, but the handicapped entrance, which in and of itself is a pejorative term. I mean, if you look at the etymology of the word handicapped, it's cap in hand, indicating you're looking for a handout is at best, okay, I can get into the building, at worst, outright discriminatory. If we had a sign out front that said Episcopalians use the rear entrance or etc. Something identifying this person as a specific class of citizen that can't use the same entrance that you and I do, I don't think it would be tolerated. And as Joe mentioned, it's been 25 years since the ADA came into law. Almost July 26th is the anniversary, but we're still struggling with that.

Dr. Lisa Belisle:

So why is that? Why is it that we've been able to get beyond so, or at least in theory, we've moved in a better place with other types of things that we've discriminated against traditionally. But in this situation, we haven't quite gotten there yet.

Jill Johanning:

We haven't. And it is challenging because people with disabilities are actually the largest minority population, larger than Hispanics or other cultures. And it's also the only minority where any one of us can become a member of. And I think when people realize that, that this could be me or someone I love tomorrow, so it does impact all of us personally. And why we haven't is a great question. We have in the architectural world so many building codes and laws and things for life safety that keep coming up. And it took 25 years to update the ADA standards for buildings. So it's kind of taken the bottom of priorities, focuses more on housing and employment and other things that come up. That's unfortunate. It's too bad.

Chris Delenick:

I think a lot of places look at it as a dollars and cents issue which can be so perpetuating that well, I don't have any customers who come in who have a disability who need a larger doorway or who need a ramp. Well, if you don't have a ramp or you don't have larger doorways or an accessible bathroom, how can a person who has a disability access your area? So it kind of self perpetuates. And then when you look at making modifications, making any changes to a structure, you know, there's always the well I don't own a lease as a business owner or well, the cost to do that is really prohibitive. And we've been doing some presentations on the ADA and for consumers who have a disability to know your rights as a consumer that were established by the ada. And when we look at the onus, it really is on the person who has the business to make their area accessible for everyone.

Dr. Lisa Belisle:

As I'm thinking about Jill, what you're saying as far as becoming disabled, it's the only group that any of us could become a part of. Becoming aged is. It's really the only group that we kind of all hope to become a part of. I mean it beats the alternative is what we always say.

Chris Delenick:

It is completely non discriminatory. We all eventually will get there.

Dr. Lisa Belisle:

Yes, we get there or we don't and if we don't, we just don't have to worry about this stuff. But we likely and hopefully will. And so it's interesting to me that this even becomes a question that I mean you're going to have older people who are going to want to likely come into your business. You're going to want to have people who, because they've always come there and now they're the same people, they're just maybe 10, 15, 20 years older. So you can't even use this excuse like well we don't have any older people because you probably do or you at some point might.

Chris Delenick:

That's an interesting comment. About three to four weeks ago, a team from Alpha One took a week and we went on Congress street in Portland from kind of from one end to the other looking at businesses in terms of their accessibility and their compliance with ADA code. And one business in particular that was an exact situation, a second floor area for the business. And they talked about having customers who had been coming from 30, 40, 50 years, and who wear it as a badge of honor that they can still get up the stairs to the second floor. And I asked, well, what happens when they can no longer do that or with customers who can't do that at all? You're kind of losing a lot of that. And it was brought to my attention that, well, we do have a first floor space and we offer private showings there. And nowhere is that advertised at the business that that's even available. So, you know, you're automatically missing such a big chunk of people. I think the statistics are, you know, Joel said 20%. It's, you know, you boil it down, it's one in five. So one out of every five people you meet have a disability. That's a big chunk of our population.

Dr. Lisa Belisle:

Well, and if you broaden that out to having special needs because you're older, the percentage of the population that's older is even larger than that. I mean, I would hate to be 80 years old and want to go into my favorite restaurant and have them say, no, no, you can't sit over here. You have to sit over here, because this is where the special old people sit. I mean, it's bad enough to think that AARP starts chasing us down with cards when we hit the age of 50. Now all of a sudden we become a population that's not allowed to just enjoy life because of the years that have built up.

Jill Johanning:

Right. And it impacts the family too, because I hear from a lot of families that want to take their grandparents out to their favorite restaurant and they can't anymore. So they're really limited where they can take their grandparents, someone out to a restaurant or for an event, and that's where it clicks and they see, oh, we can't do that anymore. It's too bad.

Dr. Lisa Belisle:

Well, that gets us back to where we started, which is this whole idea of aging in place. And we're really not even just talking about the ability to stay in our homes as we get older. We're talking about the ability to live within our greater community. So aging in place isn't just aging at our house, it's aging and having an active life, which I believe most of us, we'll seek to do as long as we can. So how do people find out more about Alpha 1 and the work that you are each doing?

Chris Delenick:

They can find out more information on our website, alphaonenow.org we also have a social media presence on Facebook, on Twitter, under Alpha 1. And you can find a host of resources there for just about any aspect of disability and community access.

Jill Johanning:

We have a lot of people that also call our number, which is 207-767-2189. And we have lots of friendly co workers to help answer questions for people that aren't as familiar with the Internet or don't care for it as much, but a choice. And we're out and about in the community trying to bring awareness with that toll free number.

Chris Delenick:

1,800647200. One of the core values or core missions of any center for independent living is what we call information and referral. So someone calls with a question of, hey, I need to do X, Y or Z or I'm having trouble with a particular area. We have a very knowledgeable staff that can point them in the direction of resources that will help.

Dr. Lisa Belisle:

Well, I appreciate your coming in and talking to me today and I feel like it's been interesting for me because I was just thinking about aging in place. I was thinking about older people. And then you bring in people who are termed disabled. And really, in the end it just means any of us at any given time could have something that makes it not possible for us to access something else for whatever reason. So really it's just a continuum. So whether people are calling Alpha 1 because they would like to help out an aging grandmother or because they would like to get up the stairs in their favorite restaurant, it's all just helping people live broader lies.

Chris Delenick:

I think one of the things that we've been talking about in the office, that's maybe conjecture, but I think we have the hope that as the baby boomer generation, which was so instrumental in a lot of major sea changes in culture and practice, as that group ages, it begins to need a lot of the resources that we've talked about will start to see see some of that same sea change and cultural change that we have in the past with civil rights.

Dr. Lisa Belisle:

Well, I hope that's true too. And I hope that the conversation that we're having will perhaps cause people to think a little bit more about all this and to think about how it personally might be impacting either themselves or someone that they care about. And ultimately that's how things get done, I think.

Chris Delenick:

Agreed.

Dr. Lisa Belisle:

We've been speaking with Jill Johanning, who is a main licensed architect, and with Chris Delennick, who is an occupational therapist, both of whom work with Alpha One. Thanks so much for being in here today.

Chris Delenick:

Thanks for having us.

Dr. Lisa Belisle:

Our next guest is Kate Adams. Kate is a certified Ag Life Care Manager and since 2005 has owned three locations of aging Excellence, a non medical in home care agency with eight offices throughout New Hampshire and Maine. Kate lives in North Yarmouth with her partner Beth and three young boys and she's a fellow Bowdoin graduate who I've known for many years. It's really great to see you here today. Thanks Kate. You're doing something that interests me on a few different levels. One is as a family doctor because I see the importance of trying to help people work through aging issues and also help people's families work through aging issues. But also my own interest in having had grandparents that have gotten older and have gone from being the one person that I knew to someone who kind of over time changed into somebody I didn't know quite as well. Why did you get into this field?

Kate Adams:

I got in because I love helping people. I mean, that sounds kind of cliche, but I do love solving problems for people, providing support for people. And you know, I'm a firm believer that if people want to stay home as they get older, they should be able to. And families are so busy right now that there needs to be other support, other services that can allow that to Happen.

Dr. Lisa Belisle:

And you're calling it aging excellence, which I love, because it's not just about, oh, let's do the bare minimum. It's really, let's keep people living these full lives, right?

Kate Adams:

It's about staying active and independent. You know, we sort of hold up as our sort of, you know, people who are running into their 80s. You know, we have been sponsors of the beach to Beacon and the senior division, and they're people who are running the beach to Beacon road race in their 80s. They've run it for years and years. People just staying active, staying home, doing as much as they can, even with disease processes starting and Alzheimer's or Parkinson's or heart disease, that it's possible, diabetes, to stay active and healthy and focused on the good things in their lives.

Dr. Lisa Belisle:

So it's not just. It's maybe acknowledging whatever genetics you have or whatever environmental factors have contributed to whatever your health status is, but it's not just accepting that there is one predetermined route for you to follow as you get older.

Kate Adams:

It's not, you know, oh, I have this disease. I'm going to sit in a chair and decline or need to move to assisted living or that I'm going to end up in a nursing home and everybody's going to be taking care of me and I'm going to be a burden to my family. I mean, that's something I hear from older adults all the time, from seniors, from people. I don't want to be a burden to my family. So I always, you know, one of the things that I say to families and because everybody's reluctant to ask for help is it's really about being proactive. It's about being proactive about aging as opposed to reactive, as opposed to waiting for something bad to happen, as opposed to waiting for a fall or some major event that, you know, a car crash, something like that, you know, that will. That's a game changer that's going to, you know, force someone to be in the hospital and rehab and then maybe not even go home again if they don't recover.

Dr. Lisa Belisle:

You're a certified aging life care manager. What does that mean?

Kate Adams:

Well, the term has just changed. The redefinition. I'm part of a large organization, a national organization that has 35,000 members nationwide. It's an accreditation. It's a sort of. You have to meet certain criteria and pass certain exams to be in that. It's social workers, nurses, that sort of thing. But it's someone that's looking at that can do Assessments that can pull resources together and create the support and a plan of care for someone to either age in place or if someone does want to transition to a facility, can really look at the big picture and solve problems or challenges.

Dr. Lisa Belisle:

Before you did this, you actually worked in the film and television industry for 12 years in LA and Seattle. It seems like there would be some problem solving in a very different way in those areas. How has there been a translation for you?

Kate Adams:

Well, I actually had this conversation with an employee recently because it, I use the analogy working in production, whether it be on which I've worked, you know, in large feature films, I've worked in documentary films and I've worked on fashion photo shoots. But it's about showing up, it's about, you know, there's a lot of money on the line in production and you know, if there's a call time, if there's, you know, a specific shoot scheduled, you can't not show up. You know, you can't. So you know, I use that to, with an employee who was, you know, a little wishy washy about her schedule. And I said, look, you know, it's, it's what makes or breaks things around here. And for a lot of our clients that we see besides the, the care management, the aging life care that I do, we do one to one care. We do one hour to 24 hour care for people. So it's about, for some people it's about getting them out of bed and making them breakfast in the morning and that's not going to happen if someone doesn't show up. So it's a roundabout answer. Your question. I feel like making things happen and solving problems and, and sort of pulling lots of pieces together to create something whether it be in someone's own home and for their ability to stay in their home or producing a feature film, it just, it's a big jump. But I feel like I bring a lot to this work from there.

Dr. Lisa Belisle:

So it sounds like there's kind of two things that you do. One is this proactive piece which is planning and forward thinking and the other one is engaging with whatever it is that is happening on a day to day basis which is kind of like just being human.

Kate Adams:

Right, right, right. Just you know, 85 year old guy wants to stay in his home and he needs help getting up and getting dressed and you know, someone to cue his meds in the morning and be sure he has something made for lunch but. Or he's stopped driving, you know, and so someone needs to go get his groceries or Take him to appointments and he's fine with not driving, but he needs, he needs that support. So yeah, just day to day socialization. Someone to show up and hang out and read the paper and go play bridge and then come back and be sure they're set for dinner. I mean, those sorts of day to day care that people need is a lot what we do too.

Dr. Lisa Belisle:

How did your work as a Parkinson's group support group coordinator, how did that filter into the work that you're doing now?

Kate Adams:

Well, I just, I've learned so much. So I was asked by Lillian Senna, who was the, at that time, she was head of the, the Parkinson's, the main Parkinson's association. And there hadn't been a support group in Lewiston for a long time. And she asked me if I would. I worked in the area. She knew that. She asked if I would start a new group and I did. And it's been, you know, it's had some sporadic attendance. But I've learned so much about the issues that people with Parkinson's face because it's such a changeable disease. It's one of those diseases that's different for everybody. One thing they say is you meet one person with Parkinson's and you've met one person with Parkinson's. The symptoms are so varied. So I've learned a lot about the different medications and how they work with different people. And it's so helpful to bring people together so they can discuss those things. We've had presenters, we've had occupational therapists and physical therapists and nutritionists. I mean, just really real. I've just learned so much about the disease. It's been really helpful to me.

Dr. Lisa Belisle:

I'm thinking about some of the conversations that I've had with patients and their families. One common scenario is a patient that has been living elsewhere and then has moved either back to Maine where they had lived before, or they've moved back to Maine or moved to Maine to be with a family. And both of those are pretty big transitions because you're talking about moving, which is a transition, and sometimes you're talking about moving in with a family that you don't really know as adults. You know them as your children. So just starting with the stresses of those transitions and then on top of that, I think it's been interesting for me to see what people bring up as issues. There's the day to day things that you're talking about, but the socialization piece you mentioned earlier, that is huge. It's not once you get them to a state of sort of basic health, then what do they do with their hours, long days?

Kate Adams:

And especially if families working, I mean you've got to juggle that. If you know, mom's going to just hang out at home while her son and daughter in law head off to work, you know, how's she going to fill those hours and what's she going to do and someone you know. So it's about resources. So either in that scenario, hiring an aging life care manager to say, okay, what are mom's options here? What can she, you know, what resources can, can she tap into in the community if she is dealing with a specific disease process, what's the trajectory of that and what can we expect and what might be the next steps or how can we plan for if it doesn't work for her to stay here and she does need to transition somewhere else or what are the different pieces that can come together and the different supports that we can put together. So it works for everybody and that, you know, there's wellness on all fronts, you know, for mom, for the family, for so. And it may be just okay, hire you know, someone to be a companion for her two or three days a week or you know, and then some days she can go to the community center in Brunswick, Virginia for instance. There's People plus that does a lot of outreach and is a fabulous community center that integrates seniors and teens. It's a really lovely place. So it's in those situations I would always recommend that someone reach out and get some advice, get some sort of analysis of the situation and what can we do to make it best. It's again about being proactive and not waiting for people to feel resentment or struggle about the situation.

Dr. Lisa Belisle:

And how do you help the senior that we're talking about, the grandmother, the grandfather, the uncle, the aunt, how do you help that person not feel like a burden?

Kate Adams:

Well, I think it's, you know, it's about communication. So I think, you know, they need to voice that concern. But I think getting support so they're not a burden. You know, I think as little as having the companion services or having someone that, that they can so that they feel like they have their own life still, that there are some outlets and areas where they're not feeling completely beholden to what their son or daughter in law or whoever it is or grandchildren or whatever that there's, I mean I use the example. So even if it's not moving in with. But say there's mom and she's declining and needs more and more assistance. And her daughter is now going and cleaning her house and going on the weekends and doing her grocery shopping. I mean, I've had calls from daughters who say, you know, I just can't do it anymore. I've got my own life. And I just, you know, she needs the help. And it's so simple. I mean, even just two visits a week, even one visit a week of someone who can go in, do some light housekeeping, get the groceries done, or take her to a doctor's appointment and just taking that level of support off of the daughter that's been going in and doing it. Then the daughter can go and hang out with her mom like she always does. You know, she can remain being a daughter and support in that way and not be, not be doing the day to day care that person's. That her mom is needing more of. So again, it's about support, it's about communication. It's about everybody acknowledging their concerns and where it's going to be and coming up with solutions, coming up with ideas that everybody feels better about.

Dr. Lisa Belisle:

Do you find that there are sometimes psychological overlays that maybe have not been dealt with for a long time or ever perhaps?

Kate Adams:

Yeah, there's always lots of baggage. I mean, and that's why, you know, I think those buttons can. I mean, I've witnessed it in my family. I mean, it's so much easier for me to go and help and talk to people who aren't my family members. I have an aunt who had a stroke in her 50s and became aphasic. She could no longer speak, but could communicate. But I was doing some work with her and I found myself so much more easily frustrated with her than for no fault of hers. But just it's family pushes buttons. There's no question there's. There are. You know, we are much quicker to judge and feel resentment and feel something when we're dealing, when we're stressed or being asked more by our family members than if we someone else. So that's what I've witnessed so often is that call from the daughter that said, Kate, I can't thank you enough. Just somebody doing my mom's grocery shopping has changed my life. It's as simple as that. I mean, because the little fights and you bought me the wrong butter or whatever it is, that's just. It's oddly stressful for families. So. Yes, absolutely. I think there's, you know, there's baggage, there's undealt with issues that easily bubble up when these additional requests are being made. Of children for parents or vice versa. I guess in cases, too, there's also

Dr. Lisa Belisle:

the very significant witnessing of decline that can be really hard on a person. Really difficult to see your mother not the strong, capable, sometimes less loving now person because she's just kind of drawn back into herself, just has enough oomph to keep on living, and she just can't be the person that you remember her to be. So I think doesn't that cause us to face our own possible decline, mortality? Doesn't that trigger something in us as well?

Kate Adams:

Oh, absolutely. I mean, because it's asking us to make a switch too. I mean, I see this with families as well, that there's a reluctance. You know, perhaps mom is still home and there's dementia involved and she's making some poor decisions. And there's. That there needs to be a switch at times, sort of a transition of roles to that the child needs to step in and make some decisions. And, you know, it is a bit of role reversal at times where children need to take more responsibility and, you know, feel more like the parent than the child. And that's hard. And for sure, you know, mom's honor, you know, making having a decline. And I'm going to too, but I don't. I don't know. That may be the underlying thing, but I think it feel like it's more. I don't know that people are really looking that far ahead. I think they're there. It's more the death of childhood. That's just occurring to me that it is that role reversal. And I see some families really resisting making that change, you know, well, if dad wants to do it, dad can do it. You know, dad wants to keep driving. That's his decision. As opposed to being proactive and saying, no, we need to talk to his doctor and we need to make some changes because dad really shouldn't be driving. So it's. That it's a real resistance to believing that I'm not the child anymore, you know, that I'm, you know. Yeah, I guess it is that they're leaving, they're on their way out, and I'll be the next grandparent. Role changes. Absolutely. Yeah.

Dr. Lisa Belisle:

I've also seen some very.

Chris Delenick:

Some.

Dr. Lisa Belisle:

Some physical things that we just. Maybe we don't talk about that much. They become very big issues in families. I've seen, for example, an older man in his 70s start dealing with incontinence issues and his daughter get very frustrated and him try to hide the fact that he's having incontinence issues. And he's not able to move around as much to take care of himself. So he won't tell her that this is going on. It just creates this. This big, big cycle around something that I don't think we're not very good at dealing with things that are kind of.

Kate Adams:

Now, there are very few families that are. I mean, I think incontinence is a. You know, there are very few children who want to deal with their parents. Incontinence. The parents have dealt with the children's incontinence. I mean, they. But the other way, I find, you know, that doesn't actually happen very often. That. That's a lot of. You know, it's a sort of line in the sand for a lot of kids. You know, I am not. I'm not going to deal with dad in the bathroom, you know, with a shower, with toileting, any of that, which is fine. You know, that's. And. But again, that's where it's about that child then reaching out to say, okay, dad, this is what we're going to do. You know, we need some help here. I know this is happening. You know, I'd rather not deal with the mess of it than have some help. So your needs are addressed. But, yeah, there's a lot. You know, there's a lot of embarrassment and shame maybe, but just denial about, you know, how things are progressing and changing and, you know, the challenges of aging and incontinence is very common challenge for a lot of people as they age. Easily remedied. Easily remedied. But it's, you know, not one that anybody wants to deal with but can be.

Dr. Lisa Belisle:

Well, that's what I keep hearing from you is, okay, so here's these issues that might be difficult, they might be embarrassing, they might seem completely insurmountable, but you're just saying, all right, show up, you know, have a conversation. There are probably some practical solutions, at least start with that. Maybe you can't get through all the psychological overlay right now, but just start with this is where we are.

Kate Adams:

Right. Right. Yeah. It's about communication. It's about naming it and kind of, you know, at least acknowledging the elephant in the room that. That everybody's avoiding. And by avoiding it and being in denial about it, you're on the fast track to something not good happening. Incontinence. Dad's gonna get a UTI if he remains in Depends or. And isn't changing them or isn't cleaning himself properly. I mean, basic stuff like that. And then. And that could get I mean, so it's just so much easier to name it, find a solution. Even if it's just a small one to start with. Even if it's just, you know, dad, you're going to, you know, wear briefs, disposable briefs, and not wear regular underpants anymore. Simple as that. Hard for a lot of families. Easy for me to say.

Dr. Lisa Belisle:

Well, I was just thinking that. I was thinking about a patient that I had who unfortunately has passed away. But she and her son, towards the end of her life, their biggest fights were about the fact that he thought she should do something. I think it was to go see a cardiologist and do something related to her heart.

Chris Delenick:

And she.

Dr. Lisa Belisle:

She had gotten old enough where she just was not gonna do it. She just. I am done. The cardiologist. There's not really that much that can be done. So just, you know, just let go.

Kate Adams:

Right.

Dr. Lisa Belisle:

And so I think that there's that interesting question. You know, it's one thing to say, dad, you can't drive, or, dad, you have to wear briefs, or. But then there's this other question like, where does this all lead to eventually? Right?

Kate Adams:

So there are those bigger questions of, you know, let's make some bigger choices about what, you know, what do you want? What are your goals here? What are your goals? Whole current discussion, you know, Atal Gawunde's book Being Mortal about. Okay, Even end of life. You know, what. What's most important to you here? What's most important to you for, you know, is it staying home? Is it, you know, that you're able to see your family? Or is it that you just want to be able to open your eyes and watch TV every day? And that can happen anywhere, you know, what. You know, and in your patient's case. Yeah. Does she want to keep her heart going at all costs? Maybe not. Because if that means that she has to sit in a chair and she can't move around a lot, or, you know, because her heart's too weak, that may not be her goal. She may want to continue, you know, going out and being in her garden. Or we have a client now that the doctor is saying she can't, you know, she really shouldn't be walking. She's like, I'm gonna keep walking. So, yeah, it's. What. What are your goals?

Dr. Lisa Belisle:

I've also enjoyed the book Being Mortal by Atul Gawande. So people who are listening, you may want to go back. And if you're struggling with some of these issues. So it's kind of an interesting read for you. This is one of these conversations I think that we could continue because there's so many different aspects to it. For those who might have questions, how can they learn more about the work that you're doing? Kate

Kate Adams:

they can go to our website and all of the offices are listed there and call any of them. Our website is seniorsonthego.com they can email or contact me directly. That's probably the best way to be in touch and learn more. I mean our website is pretty comprehensive about what we do. The organization that we've been talking about, Aging life care experts, is it's still@alca.org I believe gets the or caremanager.org gets there.

Dr. Lisa Belisle:

Well, thank you. I really appreciate the work that you're doing. It's very important. It's important and there are a lot of conversations that are happening as a result of the fact that we're a rapidly aging state here in Maine.

Kate Adams:

For sure.

Dr. Lisa Belisle:

We've been speaking with Kate Adams. She's a certified Aging Life Care manager and owner of three Locations of Aging Excellence. Thanks so much for coming in and being a part of our conversation. For sure. You have been listening to Love Maine radio show number 208, Aging in Place. Our guests have included Jill Johanning, Chris Delennick and Kate Adams. For a preview of each week's show, sign up for our e newsletter and like our LoveMain Radio Facebook page, follow me on Twitter and see my running travel, food and wellness photos as bountiful1 on Instagram. We love to hear from you, so please let us know what you think of Love Maine Radio. We welcome your suggestions for future shows. Also let our sponsors know that you have heard about them here. We are privileged that they enable us to bring Love Maine Radio to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our Aging in Place show. Thank you for allowing me to be a part of your day. May you have a bountiful life.