Episode Transcript:
JB Ambrose: Welcome back to LIFE Conversations for part two of our special feature with P.K. Beville from Second Wind Dreams and the Virtual Dementia Tour in honor of Alzheimer's and Brain Awareness Month. My name is JB Ambrose and I am the producer of LIFE Conversations. In our last episode, we left off talking about some of the touching dreams for seniors with Alzheimer's and dementia that were fulfilled through the Second Wind Dreams program, like the gentleman who wanted a simple cup holder for his wheelchair, or the woman who wanted to be a donut shop greeter. We're going to hop right back in with P.K. talking about how making dreams come true not only impacts the recipient, but also impacts those coordinating the dream -granting efforts. Enjoy!
P.K. Beville: The families too, you know, especially for what we call our sleeping dreamers. Those are the ones with dementia who talk about a lot of the things in their past and we try to replicate that. And so they kind of wake up and watching those families start filming when the dream is going on, cause you know, you know that that is something that's going to live eternally with that family. So yeah. It's, it's, the ripple effect is huge.
Christina Chartrand: So let's go back. What I'd like to talk about again is the, the, the dreams that you do for people with dementia. I think that's really interesting.
P.K. Beville: You know, just because they have dementia doesn't mean that they have stopped dreaming. And, it's once again, one of those things that we tend to discount for a person with dementia. Like, I have a woman right now who is in advanced dementia and she talks all the time about being a Girl Scout leader. Well, you can finish this thought for me. I'm going to get a hold of the Girl Scouts right here in the area and bring them to the facility and have them do some, you know, some of the Girl Scout pledge and all those kinds of things. And you know, we'll get that dreamer smile again, and she'll live on that for a while because then we take pictures for her so he's a sleeping dreamer and put in a little photo album and we let them see it over and over again and once again, you know, those families are suffering and the ones who are really involved are super suffering and so they need to see this positive piece.
I think one of the biggest ones that I ever did was along with a group of punk rockers called Local Love Loud and they wanted to make a dream come true at one of their concerts so they asked if we had any dreams that were musical and so we chatted around and sure enough there were two gentlemen who used to play the guitar, one of them on stage and so, long story short, we get to the event and they're both shined and polished and cute as a button. The families are there. And when I got there, I thought, this might not be the right venue because it was a whole different group of people than these elders would ever be used to or the families.
But, you know, so they got up on the stage and started. A band was behind them so that they could kind of enhance what they are doing we're doing and they started to play and those young people rushed that stage like they were some sort of a celebrity— the Beatles— and they clapped and they sang and they did all kinds of things and the whole time the family's face was just streaming with tears and happiness and it was hard to get those two cutie pies off the stage but you know so you're right Christina it strikes on a lot of different levels and people with dementia are some of our favorites because they they do wake up.
Christina Chartrand: So P.K., since it is Alzheimer's and Dementia Awareness Month, you know, we know that people struggle, families struggle when it comes to their loved ones who have dementia, especially those primary caregivers that are living that day to day. And even those who have their loved ones in some type of, you know, memory care, there's still, there's a lot of guilt and people just don't know what to do. And I just love your perspective and your thoughts on, you know, what things we can do to support families.
P.K. Beville: Sure. So, I was guilty of this as well, where I tried to lay close to my vest about my father, tried to protect him and all of those things, and there's nothing wrong with that, but the stress on the caregiver is so immense that I worry caregivers don't share enough of what they're dealing with with the people around them. They sort of hold it — Stop doing that!
Tell people what's going on and when people ask what they can do to help give them something to do. If your loved one is in an elder care community then just and they again you're lamenting about some of the care and some of the issues and they say "What can we do to help?" your response to that should immediately be "I would love if you'd take me to lunch." Just ask!
If they're living at home and you're dividing the care and Senior Helpers is there to help out and they say, "What can we do to help?" Say, "Come sit with my loved one," "Let me go have lunch out," "Come with me to the grocery store." All of those things we're just not doing. And it's adding to the quote burden of care that we experience.
And let's, let's just, you know, heart to heart have a moment about grief and feeling guilty about what's going on. You know, we can make ourselves feel guilty about just about anything. I was raised in a Southern Baptist family and I can tell you, I can feel guilty about the day's weather. So what I've liked for you to think about doing families is, realize when you're feeling guilty about something, name it. What is it? Name the thing that you're feeling guilty about, and then ask yourself, "Do I truly have ownership over this thing I have named?" If you do, change something. If you don't, try to let it go. It ain't easy, but until you name it, that guilt is just gonna follow you everywhere. And you may have to name it several times to get to the bottom of it. I hope that helps.
Christina Chartrand: I like that. I feel like I sometimes I actually that's I'm going to take that back with me when I'm thinking about sometimes some of the things that I'm feeling stressed out about and guilty about, especially when it comes to my mom. And there are definitely things that wake me up in the middle of the night and I can't get back to sleep. So I'm going to try that. I really am.
P.K. Beville: Please do. And you know, call me if if you need anything.
David Chandler: So, P.K., looking out into the future of dementia care, are there any things that you anticipate or see on the future landscape of dementia care? Any, yeah, I'm curious about that.
P.K. Beville: Yeah, I think things are better than they have been in dementia care for one specific reason. We are moving at a snail's pace that had a pace of trying to move from the medical model in dementia care to the social model in dementia care. So what I mean by that, is it is not— There are medical things that need to happen to help care for a person with dementia, and one of them is identifying pain. People with dementia can't tell us they're in pain, they end up acting it out, and what ends up happening is they get on medication that is not for whatever's causing the pain. So that is a number one thing that from a medical standpoint we need to be better at.
Now, secondly, on the social model, we're starting to actually identify the emotional needs of what a person with dementia is dealing with. They are dealing with the loss of their capabilities. They're dealing with the anger of not being able to do things like they used to be able to do. They're dealing with so many different emotions that we are not even identified.
And this is happening even in the advanced stages of dementia— We're not picking up on how emotionally difficult some of this is. So, I think when we're working with our clinicians, and I encourage all of your team to think about that, that what they're dealing with is so highly emotional that we need to take a deep breath.
We need to get on their level. We need to be empathic. We need to walk in their shoes. We need to do that a lot. And then we can maybe identify the ways that we can help those people with dementia that doesn't include the medical model. What we still need it, don't get me wrong.
Christina Chartrand: Yeah, I really love that. I think that's pretty powerful. You know, I'm also thinking, you know, if you're looking, thinking about the future, like, and I'm so glad that you feel that we are making progress, you know. I feel like people are talking about it more and, you know, and you can't deny the baby boomers and the silver tsunami that's coming that we're going to see more and more people with dementia as people are living longer from a perspective of, you know, resources as far as, you know, providers out there, you know, different types of new communities and things are being developed. Is there anything out there that you see as a really great thing that's going to be coming around to, you know, provide, if it's providing care, providing resources, is there something out there that you're kind of keeping your eye on that we should all keep our eye on as well?
P.K. Beville: Yeah, the Dementia Friendly Movement. It's well established in some areas of the United States and other areas, not so much, but I've gotten involved in trying to come up with ways that the community can begin to be responsible for their people with dementia by having those resources available by training the public on what keeping a person in the community with dementia is like. So you see that is such good news.
Now, Dementia Friendly America has been around, but, just now in Georgia, we have a couple of counties that are "Dementia Friendly," I'm working on the task force with the county that Second Wind Dreams is in to help create a dementia friendly community. But you see that not only is that exciting, but it's also taking our people with dementia, and being responsible for how we care for them. Yeah. Have you seen some of these new age -friendly parks? That's part of this dementia -friendly movement. So, yeah, I see it moving, and I also see the care moving more from the institutional model to home care.
Some studies that are coming out now that with the right tools, people like Senior Helpers, with the right tools, a person can actually care for their loved one at home or in their own home for longer than they used to. Now, the PACE program is one of those that's exciting to look at. So I do think things are shifting so that really the more severe, severe ones that we can't care for at home are the only ones who are in a congregate living setting.
Chrisina Chartrand: Yeah, I agree too. I think we're beginning to see that as well. David, do you have one more question? If not, I'm going to wrap this up because we're taking so much of P.K's time.
David Chandler: No, I'm just— P.K. It's been so wonderful to have you on our episode today. I can't imagine how many people and how many countries did you say?
P.K. Beville: 24.
David Chandler: 24 countries, I mean all across the world, the families, the staff, the seniors, I can't imagine how many people you have impacted and it was just so great to have you on our podcast today and thank you for all you're doing.
P.K. Beville: Thank you. Thanks for inviting me.
JB Ambrose: Hey everyone, this is JB again. Thank you for joining us for the second part of our conversation with P.K Beville. To learn more about Second Wind Dreams and the Virtual Dementia Tour, please visit secondwind.org or check out our show notes for a link. Next month, we have a really exciting lineup, including the amazing Matt Thornhill to talk about his Openly Gray movement and the importance of community as we age. Until then, keep shining bright for Alzheimer's and Brain Awareness Month.
