Nov. 20, 2023

Caregiver-Patient Relationships: Yes, You Can Have Fun!

Caregiver-Patient Relationships: Yes, You Can Have Fun!

Taking care of and connecting with a loved one who is living with dementia is difficult, but it's also something that many people have to do. This week, we talk with Mary Anne Roberto and Debbie Axel, co-founders of Always Home Connected, a company...

Taking care of and connecting with a loved one who is living with dementia is difficult, but it's also something that many people have to do. This week, we talk with Mary Anne Roberto and Debbie Axel, co-founders of Always Home Connected, a company that helps provide caregivers and families with more resources that encourage bonding. They walk us through why they started their company, the types of products they sell, and share the impact that they have made in the lives of caregivers and aging patients. 

You can learn more about Always Home Connected here.


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Debbie Axel  0:00  
Instead of putting people in homes, now we have a lot of resources and tools for the caregivers to work with. So it is an extension of what we were doing, we feel like we are now just providing them with the activities that our parents didn't have, our moms didn't have. 

Terry Wilcox  0:19  
This week on the Patient's Rising Podcast, taking care of an aging parent or loved one is something many of us have to do. But what if we had a few extra resources to help us and them? We speak with the owners of a company working to do just that in a moment. Welcome to the patients rising podcast. I'm your host, Terry Wilcox, CEO of Patients Rising. I'm joined by my co host, the guy who thinks the White House turkey should should be named the Inflation Reduction Act.

He's Bob Goldberg, co founder of the Center for Medicine in the Public Interest. Now, Bob, shouldn't we keep politics out of the White House? I mean, the turkey pardon ceremony? 

Bob Goldberg  1:03  
Well, can you can you think of a more appropriate name? I mean, really. 

Terry Wilcox  1:07  

Bob Goldberg  1:09  
Could be well, that works. Now actually, I heard that the White House wanted to use a genetically modified turkey this year, that someone apparently crossed a turkey with a banjo. So Terry, it doesn't play music, but it can pluck itself.

Terry Wilcox  1:28  
On that note, I think it's time to stop talking turkey and get back on track. 

Bob Goldberg  1:32  
That's right, Terry. And today we're speaking about a subject I know a lot of us are familiar with, including me and in you. You often say you're part of a sandwich generation, taking care of your own children, but also taking care of those who used to take care of you. Terry, for people who haven't heard you talk about this before, could you tell us a little bit about what that means to be a intergenerational caregiver, especially balancing taking care of your kids with the older loved one? 

Terry Wilcox  2:04  
Definitely not. For those of you who don't know, I have twin boys who are 10 years old. And my 88 year old mother in law lives with us. And then about five miles away, my stepmom who has Alzheimer's disease lives in a memory care unit. My dad passed away right at the beginning of COVID, so she is alone. My father in law passed away in 2019, so my mother in law is alone, and we're responsible for their care, 100%. Now, not 100% I should say my stepmom is in a memory care unit. Thank goodness, they do a really great job of taking care of her and but we you know, see her often she's five miles away. But it's a lot. Even having that help. I mean, I can't even imagine I don't think I could do it with my stepmom and my mother in the law. I don't even know if I could make that work if I had outside hope. We have too many stairs. But it's a lot and the burden on caregivers and there's many families, I mean, we are extremely blessed as a family because we do my stepmom did have the foresight because Alzheimer's runs in her family to get a really good long term care plan that literally covers all of her care at this facility. But, of course, I'm not alone. There are so many people taking care of aging loved ones, including Debbie Axel and Mary Anne Roberto. Now they founded a company called Always Home Connected. I'm excited to talk about it because of what it offers. But first, I wanted our audience to hear what inspired them to create it. And that's their own personal stories, which sound remarkably similar to mine. And many that I've heard over the years, both Mary and and Debbie's mothers were diagnosed with dementia. First, here's Mary Anne. 

Mary Anne Roberto  3:54  
We were all just grasping on, you know, should we have mom have help at home? Should we move or somewhere? Should she move in with one of us? And so first we got my mom, a caregiver who was wonderful. And then after that, I wanted to get her closer to me. So she moved to a community in Santa Monica so I could visit her every day. But it was during that time that I realized I knew nothing about the disease. And I was always asking for help. And my mom was definitely older than most of my friends parents. So I didn't have a lot of friends that had gone through it yet. So I really had to educate myself and learn the best things I could do to engage with my mom and her caregiver engaged with her. And you know, I wish at that point, I would have had these activities for her because I was always buying stuff and then not working out, you know what would work, what wouldn't work. And so that's kind of was also behind how we started this company.

Bob Goldberg  4:47  
Terry, Debbie lives in California. But her entire family lives around the Philly area which makes an already tough situation even tougher. 

Debbie Axel  4:58  
It was really difficult for me, because every time I spoke to my mom on the phone from afar, you know, she had a script. How are you? How's your son? You know, how's the weather? How's the dog? So I never really knew the extent to which she had slipped away. And my brothers and my dad would be like, you just have no clue. And then when I went home, I was like, oh, you're right. Mom needs some help. So it was really, you know, we were in denial for so long, because she held it together pretty well. But when she needed help, she needed help. You know, I think the hardest part for me was that you don't want to believe it. You know, my mom was just the sweetest person she still was. But you know, the mom that I grew up with wasn't the mom that I had to kind of know, again,

Terry Wilcox  5:50  
While there is some luck involved, working with your caregiver can make a big difference as well. 

Mary Anne Roberto  5:57  
I feel like sometimes we have expectations that aren't filled. But if we don't communicate those expectations, how does the person who's now taking on the responsibility of taking care of your loved one, fulfill both, so I always try to really have an open dialogue going and, you know, telling the thing, the positives along with sometimes the negatives, and that doesn't mean the negatives are bad, but just different things I want my mom to be doing like, she still loves to cook just because she can't remember the recipe, let's take out the recipe, let's do it together. And that was a way like, we encourage the bonding going on between normal and my mom,

Terry Wilcox  6:31  
You've really dealt with this a lot, Bob with the home caregiving stuff, because your dad still at home and he's in his 90s. Correct? 

Bob Goldberg  6:39  
He's in his 90s. He's very independent, you know, goes out with his friends when he has the chance. But it's important for him, and for everybody else, you know, in our family, that he does have somebody that comes in a couple of times a week that he can talk to that cleans, that allows him to, you know, get out of the house. And, you know, so far, you know, he's like he's the quarterback of all this. I know other people whose parents are dealing with dementia, sometimes you don't get so lucky. And your parents may not always tell you exactly what's going on. So communication with the caregiver itself, or the company that provides a caregiving really is important. 

Terry Wilcox  7:25  
Well, and definitely the case right now that we're going through at home, now, unfortunately, I was never able to get a caregiver for my stepmom, she was too stubborn. So she went straight from zero to 60, because they lived in Denver, and she had my dad at home, honestly, who was fine, you know, mentally. So in her part, she went straight from kind of being in the home. The worst thing we had to deal with was her was she started getting in a lot of car accidents, we had to take the car away, which is hard. And then here right now we've had to do that with my mother in law, we she no longer drives, and I hired a woman who comes three days a week. My mother in law is not really sickly. She's actually pretty healthy knock on wood at the moment. But she needs companionship, to do some of the things that she used to do in her car, like, go to that nail salon and get her hair done. And she still likes to cook but she's not as fast as she used to be, she can always open the cans. So basically this caregiver, she was like, I don't need anybody. I don't need anybody. I don't need anybody. And it was like she fought me on it. And I kept telling the caregiver, I'd be like, just be patient with her and just be there for when she needs you to take her somewhere. 

Bob Goldberg  8:34  
Yeah, and along the lines of what we've been talking about, you know, they created a company called Always Home Connected. 

Terry Wilcox  8:43  
And the business itself, it has morphed over the years. But what it is now is essentially an activity box for you and your loved one or a caregiver and your loved one to connect and create meaningful engagement. Here's Debbie:

Debbie Axel  8:57  
You know, through trial and error of what we went through, we put together at Always Home Connected the curated activity boxes, we look at every activity that goes in the box, we test every activity that goes in the box, we make sure that experts know what's in the box, they've looked at the box. So we have that, but we also sell and have puzzles and games because there's so many different stages of dementia. So you know, some people may just be in the beginning. Some people may be in the later stages, but a lot of activities that are either in the box games and puzzles to help people and family members, caregivers interact with the individuals, things that individuals can do alone or with others. A lot of the things we have are sensory related. You know, we have the hug, we have the twiddles we have our fidget blanket. So you know we have everything that we have is to help interact and engage with a person in whatever stage of dementia they happen to be in.

Bob Goldberg  9:58  
Yeah, I can just imagine the box that my father would want. He's incorrigible. So that's probably for another conversation, Terry. But I love this idea of this curated box. Always home connected, you know, works with the professionals and industry, aging service providers, and of course, families and friends to curate these boxes. So I'm curious, you know, what do they actually have in them? Debbie tells us: 

Debbie Axel  10:31  
We have started off doing seasonal boxes. So, for example, in our fall box, we have a lot of arts and crafts activities. Some are easy, some are more difficult, but most of them are arts and crafts, we also will have like a music element in there. You know, for example, in our fall box, we have a rain stick. So not only do you make the rain stick, but then you can shake it. And we suggest different songs and what you can do and how you can work with somebody because every box also has instructions for every single activity that's in the box. So step by step, how to do it, how to use it, we have memory prompts, so you can talk to whoever you're working with. See if any of this brings up any memories, it's good for reminiscing.

Terry Wilcox  11:20  
I have to tell you, I have used to always home connected boxes with my stepmom, I've actually gotten some extra ones and handed them out to other families at the Memory Care Unit where she is. It is a such a great, it's an amazing service because it's really difficult as the disease progresses. And how's this venture gone? Debbie and Mary Anne say they get emails and feedback all the time about how the activities have helped families connect. Mary Anne says it can be especially helpful for the younger ones and the family to connect with the older generation. 

Mary Anne Roberto  11:59  
So like, I'd heard a story about how it was so great. She's like, we wish we had one for everyone in the family to deal with. We all had so much fun doing arts and crafts together. So then they ended up buying like a group box with more activities for the whole family. So I think that's kind of a fun thing. It's really engaging. And sometimes, I mean, whether your grandmother might not even have dementia, sometimes there's such a generation gap that they don't know what to talk about, like, kids don't know how to talk about the game, they're playing on their iPad, you know, or they don't want to, you know, what to talk with grandma about. So I think this is a fun way to engage with them.

Terry Wilcox  12:32  
So true. It's such a great idea. 

Bob Goldberg  12:34  
I want a box 

Terry Wilcox  12:35  
Yeah, I mean, you should send a box, we actually, the boys have done some stuff with the box, puzzles and different arts and crafts with the box with my stepmom. And they really have no way of connecting with her because their whole experience of her has been in this state, really, I mean, they're only 10. So there's very little that they can latch on to from when they were younger, they can see videos and things like that. But so that has been really helpful. And to Anne's point, you know, being able to connect across the generations is super challenging. It's even challenging with my 10 year olds and my 88 year old mother in law, I mean, you can see the the generational gap there is quite large. But they do a great job of finding those arts and crafts and those touch points where you can make a meaningful connection. You know, and one of the things that they said in the interview, and it's something that really stuck with me, and they kept saying, and I'm paraphrasing this a little bit, but it may not be the mom you grew up with, but it's still your mom. And that was so powerful to me and and I think that you know, when I look at my stepmom and as I you know, visit and I think about, you know who she was and where we are now. It's so powerful because she is still my stepmom. She is still in there, right? 

Bob Goldberg  14:01  
Yeah, well, it's a great resource and a wonderful program. And if you'd like to purchase one of these boxes or learn more about the organization, you can use the link in the show notes.

Terry Wilcox  14:17  
This episode of the Patients Rising Podcast is brought to you by the Patient Helpline. This free service is just one of the many ways we try to help our patient community. Patients oftentimes have trouble finding medical transportation, or trying to understand their insurance. And that's where we jump in. We have navigated hundreds of individual situations with patients. If you or someone you know has a health care question, challenge or issue we are standing by and ready to help to get in touch leave us a voicemail or send us an email using the link in the show notes.

Bob Goldberg  14:53  
So Terry, in keeping with today's theme and the spirit of the upcoming Thanksgiving holiday, this month is also National Family Caregivers month. And of course, you know, we're really thankful for all the caregivers out there. 

Terry Wilcox  15:09  
Absolutely, Bob, and there are so many different ways that caregivers inject their wonderfulness into our lives. And I know many of our listeners either are caregivers or utilize the services of caregivers. Today in America, more than 53 million family caregivers provide unpaid care. I know this stat really well, because Chris McCabe, who we worked with on our caregivers podcast, and we'll be coming back with that in 2024, as quoted that, and it's always been incredibly powerful to me, because that's a lot. It's a lot. 

Bob Goldberg  15:45  
So in honor of the month, the National Council on Aging is promoting a #caregiving around the clock, and that acknowledges that for many caregiving never stops. So a link to that website with more information on National Family Caregivers month is in the show notes. So Terry, that's all for today, but we will have another episode right here Monday. So make sure to follow the Patients Rising Podcast on your favorite podcast player, so you can be notified as soon as a new episode is live. 

Terry Wilcox  16:24  
Until next week for Dr. Bob and everyone at Patients Rising. I'm Terry Wilcox, stay healthy.