Beth Allison Shares Considerations When Caring For Loved Ones with Alzheimer's and Dementia

Welcome to the D ship podcast, where we provide inspiration, motivation and education to help you transition from the challenges of divorce to discover the freedom and ability to live life on your own terms. Are you ready? Let's get this shift started. Hello, and welcome to another episode of the D shift. And today I want to introduce somebody that I just met recently. She is a phenomenal person, her name is Beth Allison. And Beth is a Beth has a really unique niche in the coaching industry in that she supports people who are dealing with family members with dementia. And I know a lot of our listeners are Beth, what would we call it the sandwich generation where they're dealing with older people in their house, and they're also dealing with younger people. So as women, we tend to take on that caregiver role. So, Beth, thank you so much for being here.

Oh, thank you. I'm glad to be a part of this.

So this is this is a really interesting topic and one that is certainly touched many, many, many families in many lives. So what what got you into this area of expertise? And why do you think that this is so important for people today?

Yeah, well, when I was first looking to leave corporate America, I wasn't sure what I wanted to do, I found my way to life coaching. And as I was doing that, as much of most of us coaches know, we can coach people on anything, but really where our experiences come from. So I first really started on life transitions. So a career change, ready for retirement. However, it started to resonate with me that there was a population of people that I had been part of which was having a family member diagnosed with dementia. My mother had Alzheimer's. And my dad and I and my brother kind of really just kind of wanting it, right, we took a while to get out of denial, and then what are we going to do? And I really wish I had known then what I know now, I know that that sounds so cliche, but it's so true. And I didn't really know anybody who had gone through it to have that personal side. And there was a lot of information out there, the Alzheimer's Association as great. But I went to their website, and I was already in overwhelm and didn't know and it the site kind of overwhelmed me more. Yeah. So it took me a while to get through. And I rarely it now is really an anomaly when I meet people and tell them what I do. If I hear that someone hasn't known someone with dementia, or especially in their family, right? It's, it's rare, you don't find somebody who has had some type of experience with it. And then when I tell them what I do, they kind of get the response like, Oh, I wish I had that when I was going through it or I know. Right? I know so many people who could use that. But it's, it's near and dear to me. I'm very proud of how we navigated with what we knew at the time. I think we spected my mom's wishes and and all that. And now I'm going to do it with my dad who doesn't have dementia, but it's still the caregiving, right. It's a lot of it is the planning Yeah. As much as you can, and there's no crystal ball. And the plan probably will not go as planned. But that's where in the plan you have options. Right. And and it's knowing what those options are. So it was the dementia hit close to home. And that's kind of how I found my way into wanting to help others.

Yeah. And so dementia, and Alzheimer's and the whole umbrella of cognitive disorders as people tend to get older. It seems like there's a lot more diagnosis of this. So do you think the medical field has just caught up to oh, that's just not, you know, senility or that's just not normal aging and they're starting to recognize that this is really a brain dysfunction issue.

I believe the medical world has caught up to that. I think it's the individuals catching up, right? Because I remember when my mother was starting to have the the symptoms, right, but I'm just getting it she's getting older. You know, her social life has dwindled. So you know, she's her world is smaller, so she's going to repeat things right and it's just aging. And then it got to a point that I really said, I don't think so it became much more evident that there was something else and got the doctors to take a look at it. She went to a gerontologist and neurologist and a got diagnosed and now, now you've got that, you know, and to be afraid of what you ask for, right? It's kinda like, oh, it's not just good. You know, it's now. Okay, so what does this mean? Yeah. So I do believe the medical field has finally caught up, it's now the rest of us being more open to the possibility.

So So I appreciate that. And maybe what are some of the early signs that a family member might notice where as a medical doctor, you know, seeing them 15 minutes, twice a year, however, often people go to the doctor, and especially now with people going to so many specialists, sometimes there's not that ongoing relationship with a with a family doctor, like the old time, when we grew up, the whole family went to the same doctor, and you know, you went with that doctor till you were born until that doctor retire. You know, so, now, that's not the way that most people deal with their medical stuff. So what do family members or what should family members be watching for? If they've got some concerns? You know,

I think it definitely is, you know, the, the normal ones, they are repeating themselves, right? They are not sure if people's names, you'll even see them walk differently, right? Because it could be the environment that they're in, they're not familiar with. Right? So they're very much more cautious about how they're walking. One of the things that in hindsight, was my mother lost that the sense of taste? Oh, really? Okay. So she really wasn't eating but it took us a while because we would hear that she doesn't want to she's not hungry. But as we learn, she didn't want to because she couldn't taste it. Right. Yeah. So it's a lot of times if you're seeing things where they would normally do trying to find out why. So that it was for her it was the last of taste, which was one of the things as it progressed, that it made her extremely frail because she wasn't eating she would want sweet so peanut butter and jelly and to talk about you know, life in a circle right it's like growing up you love peanut butter and jelly and what was she really eating? I think if she could have had it for three meals a day she would have we did finally get her to drink ensure so the chocolate so that it was sweet and soda, which was not something she usually drank, but if she was going to eat it was something that had a sweet flavor. Okay. Okay,

so basically any kind of changes that are ongoing and unusual or concerning is what I'm hearing could potentially be something if

they feel out of sorts. If you can tell that they're not comfortable because I think another thing my mother became much more fidgety. Okay, was fidgety to begin with. So that was a hard one for us to identify. But she was much more fidgety as time went on. Okay. And I think you know what, if you just are sensing something that's off, get them tested. So you can find out early, as early as you can in the process. I will say that my parents I refer to it as they had a dance. You he would lead. My mother would follow, literally right. She would take her cues from him so it kept it from other people. noticing, right? So you had to be really, really aware until it progressed a lot. But they had this little dance. And so I think my father had just gotten used to the dance. So he was not necessarily acknowledging it as much as it was either.

Right, right. So once once you have the diagnosis, when you're working with your clients and coaching them to support their loved ones, what are some of the basic things that you might want to implement in your home? Like, are there specific physical changes in the environment? Or, you know, what? What kind of things? Can you help? Can you assist people to stay more cognitively active or more engaged with life? Or? I don't know if I'm phrasing that right.

Now, there are things you can do one of the things that we were very concerned about my mom, she was accident prone early on in her life, but we did move some of the furniture to give her a wider walking space. So she wouldn't bump into legs of chairs or the edge of carpet. Right that like there was a rug on a hardwood floor. So we did those things. The other things depending on things that they would normally use, put them out, right, so that they can see them, because they don't remember where they when, right, you know, so then they'd be looking all over. And even though it was in the same place that had been for the last 15 years, sure. They're not. So if there are things that they use repetitively keep them out on counters, or things like that, it does drive the OCD people a little crazy, wouldn't do that. But it's much better than, you know, my dad having to be called from to the other room to find the salt. Yes, or, you know, a glass, so. And there, there does come a time if they're still at home, right that. Like, my mother wasn't always sure where the bathroom why and so there was a door that went down to the basement. So when I noticed that when I was over, and I'm with a noticing, because I'm not there all the time, my dad's not gonna notice them, right? So you want to visit your loved one, if you're not living with them, kind of just see how things are progressing. But I said to him, I said, you're gonna want to get a lock on the basement door. And he said to me that she doesn't go down there. Like, that's not why I suggest that. I said, she may think that that's the bathroom, and open the door and take a step. And she'll be down on the concrete in the basement. Yeah. And he was like, oh, right, I said, it just, you know, it's, it's a game get this oriented, right. And so there are things you know, when I work with my clients, it's one helping them if the loved one is going to stay in the home that they're at, or there are, you know, other options, there are also resources that can come in and evaluate a home right? There dementia specialists I'm not I have my experience, I'm not a specialist. But there are people who can come in and say, Oh, you might want to do X, Y and Z, right? For safety purposes, but there are you can have in home care come in, right. So making sure that the caregiver gets time to themselves, which is really important. And then, you know, there are different options for assisted living. And then there is when there needs to be some nursing or medical care. So I've created a caregiving continuum that outlines those things and I meet my clients wherever they are on that continuum.

So do you find that staying and I know there's a there's a lot of debate about whether people with Alzheimer's and dementia should be kept at home. When it becomes a danger, you know, when it becomes more dangerous, like, I mean, I I worked in a psych hospital full disclosure, I worked at a psych hospital for five years and there was a dementia. Well, it wasn't called memory care. Then it was called Dementia. The dementia unit And, you know, it was locked doors, it was locked windows, it was really designed to prevent people from wandering out getting lost, maybe getting was in Canada maybe getting outside in the winter with just like their clothes on without having a coat and stuff. So that the last step was for safety. If I'm sure as a family, that's a really hard decision to make, as to when to actually look at a memory care unit or assisted living or, you know, a nursing home environment like how how, how do what are some of this ways to make that decision? I know that's, it's incredibly personal. I'm sure every family has their own way to do that. But just generally, how do you see that coming about?

Yeah, I think it is extremely unique per family member. One of the things that I talk to my clients about is that moves like to different environments, even if there for a short amount of time are very disruptive to somebody with dementia. And so even if, when they go back to where they're familiar with their it's almost like it progressive, the dementia, right? Because they've gotten used to where they were, maybe they have right and now they're back. So my mom stayed at home, my dad was the primary caregiver until she fell. And then she left went to the hospital, went into a rehab facility. There, she broke her other half had to have the exact same surgery. She passed seven weeks from the day that she fell at home. But ironically, my dad and I had been talking a couple of weeks before going, let's get her on a list. I think it's time for her to go in. And what the criteria for us was that it was really wearing a lot on my dad. Sure. And she was not getting the care that she necessarily needed. Right. Right, because my dad couldn't do it all we did have some help come in. Not a lot. I think most people and then especially people who have dementia, they don't want people they don't know if they don't really know anybody that they don't know and that our home because anybody who comes in is a stranger to them. Right? Sure. So I have my thought is, if you can get them into a facility where they have progressive care, right? That is the most ideal because they will be familiar faces. They may not know who they are. It's kind of like my dad, my mom knew my dad's name was John, but did not necessarily know that he was her husband. Right? So they lose the association. She knew she liked me. She liked it when I came over, but she didn't know my name. Right? So I'm certain she didn't know I was her daughter either. Right? But so it's how much can somebody do? Right? And are they willing to do? There were things that I for myself, I felt guilt and shame about. And these are all their valid feelings. I had to learn that is that my mother needed debate? Well, part of the dementia for her is that she became afraid of water. I looked at my dad when he left the doctor's appointment. I said, I hate to say this, but I can't make her. Right. Sure. Right. I said so. And you have enough trouble getting her dressed and doing everything around the house. I said there are people who do this, you can have somebody come in, make sure that she gets paid. She'll not be happy with them, but they get to leave at the end of the day. I said, Dad, you don't get to leave at the end of the day. Yeah. Right. So and I looked at him at that point. And by the way, when it comes to your time, I can't do it for you either. So get that. Right, get that out of the way. Like those are things like I'm not loved my mother. I'm not a caregiver, right. That's not the way I care is through my coaching. Right and yeah, right. Yeah, there's different elements and so not everybody is a caregiver Ever. And so I really think that it is individual. I don't I know that my parents never really had that specific of a conversation they did have the conversation of they promised the other that whoever got sick first, that the other would let would have them stay at home for as long as possible. What's that? Yeah, right. So let's identify that, right? Is it until really they, you know, don't know where the bathroom is that they're tripping over things in the home? It's right, whatever it is, but have those discussions because I think my father sort of felt I made this agreement. Right. And they were married for 62 years. Yeah, yeah. And, you know, very rarely were they apart. So I don't think he regrets it. And a lot we, you know, we could look at things and say, we should have done it this way. Should have done it that way. I think it played out exactly the way it should, because she felt two weeks into the pandemic. Yeah, well, so he wouldn't have been able to see her be there. You know,

and this is, I think, the value of your coaching, because you can be that sounding board to ask those questions, and then let people think through it, and then make that decision. And know that they explored options, they considered what was best for their loved ones themselves. And the thing that I always bring up, is, you know, if you've got little kids in the house, even teenagers in the house, this can be really traumatic for them too. If grandma or grandpa or a love, you know, an older loved one is dealing with Alzheimer's and dementia, it can be frightening for those kids sometimes. So you know what there's some people get the real temper tantrums, they get the outbursts, they get upset everybody, but some people do. And so I think as the caregiver, you have to look at everybody in the family, including yourself, not, not just wanting to take care of one person, although, you know, it's very difficult time.

That's a great point. Because, you know, my dad and mom and I were living up in Connecticut, and my brother was in Virginia. And so making sure we were keeping him informed of what was going on, because it affected him as well, even though not right there. So trying to keep all the family members involved and not getting angry or feeling, you're gonna have all the feelings, you're gonna be frustrated, angry, resentful. You're gonna go through grief. And when your loved one has dementia, you lose them before they die. Yeah, I lost my mother years before she passed. Alright, so you have you're then going through that grief along with all the other things. And having a safe place to have those conversations or, you know, I'm going to ask questions that they may not have thought about, I did it with someone recently. She's going to be the caregiver of her sister when her sister ELLs, her sister lives in a different state five hours away. And I said, Well, what you know, have you and your husband talked about it, she's like, well, it doesn't affect him. I'm the one that's going to be the caregiver. I'm like, and so when you need to go five hours away for a weekend, or at the drop of a hat, because something is going on, unless you've built in, you know, things to take care of it. So you can be remote. Right? It will impact and she was like, Oh, I hadn't thought of that. Right? It it affects everybody in the family. It affects your work. If you're working, if you're a working, you know, person and you're taking care of your loved one, where do you get find the time for you? And those are the things that we walk through. And also I know that a lot of people don't like to have the difficult conversations. And I'll just put the first one that nobody likes to talk about at the top of the list, which is finances. Yeah. Yeah. And then the second will be what are your wishes for when you pass?

Yeah. And have that and have that power of attorney stuff set up and the, you know, a Living Will Do Not Resuscitate Order, whatever you want. You need to get that you need to do that when you're healthy. Because that's when you make the This decision. So, Beth, we have covered a lot of information. And this is a very, this is a very sensitive topic, and I really appreciate you coming on and talking about this, because these are difficult conversations for families to have. What would you what would you like people to remember the most out of our time here together,

you don't have to do it alone. You really don't have to carry the burden. There are people there resources there to help. And, and along with that, is that all the feelings that you're gonna have? They're all valid. Yeah. And it's okay to have them, it's actually better to have them instead of stuffing them down. And, and as much as your situation is unique. It is also very similar to others who can help you through that and navigate it. And there are resources out

there. Absolutely. And, and your coaching service being one of them. So if people do want to get ahold of you, Beth, find out more about what you do, or, you know, just just get more information, or work with you, what's the best way for them to reach out to you?

Yeah, the best way to reach out to me is you can email me at Beth at within you. And that's the letter u coaching.com. I also have a Facebook page, or you can check out my website, which is within you coaching.com. I will let you know it does not have a lot about the caregiving part there right now. But I'm building that as we speak. But those are the ways that you can definitely reach out and get in touch with me.