Mary Anne Oglesby-Sutherly is the founder and executive director of a day care program for people with dementia. We discuss a variety of things, including: how to cope with receiving a dementia diagnosis, why it matters what kind of dementia it is, how to find resources such as caregivers or respite programs, when to seek palliative care or hospice, and more.
[00:00:00] Diane Hullet: So I’m back with Marianne Oglesbee southerly from the veranda ministries to talk further about dementia. Welcome again, Maryanne. It’s good to be
[00:00:09] Mary Ann Oglesby Sutherly: back. So we
[00:00:11] Diane Hullet: were just kind of talking about this power of how, how can caregivers, how can end of life doulas? How can people help people with dementia?
[00:00:23] Mary Ann Oglesby Sutherly: Well, you know, I’ve thought a lot about that because.
[00:00:29] Before, too many people I’ve done this for a long time. It just didn’t have a name, but had I not understood the disease, I would be useless to a family. I can’t. Family doesn’t understand that disease. When you’re told your loved one has Alzheimer’s or vascular dementia, the first thing you need to go is
[00:00:50] What are we going to do? Mom’s going to be this way. Mom’s going to be that way. Dad, mom, what am I going to do? I’m going to be alone. I’m going to lose my husband. He’s worked at there’s so many things.
[00:00:59] [00:01:00] time.
[00:01:00] Diane Hullet: What are the best resources do you think for families? I mean, there’s so much. How do you pair it down to the
[00:01:06] Mary Ann Oglesby Sutherly: best? Well, you know what the best to me, I mean, I can’t help it say this. If you want to know where your answers are, it’s at deepest snow.com. People is the most amazing E B E a S O w.com.
[00:01:22] She has videos on their sheet is that person in her team, the PAC team, the positive approach to care team. There they’re great people, but they’ve spent their lives studying how. Dementia affects families have dementia affects those living with that disease. And if you want answers, That’s quick, then that’s where you need to go.
[00:01:45] Because there’s videos, there’s YouTube videos. You can watch. There’s all kinds of things on all kinds of different dementias. There’s nothing you can’t find about the Mitch on that page. And as
[00:01:56] Diane Hullet: we said, it’s like, Tepa snow wrote the book. Like she wrote the book, she wrote [00:02:00] the book and I think in a truly accessible way.
[00:02:02] Yes. You also had somebody come as a keynote speaker recently. Oh my
[00:02:07] Mary Ann Oglesby Sutherly: gosh. Yes. And his name is Dr. Potts Daniel. His dad is his dad had Alzheimer’s and he missed it. He was a neurologist and he didn’t someone come to him and said, Hey, your dad is losing the car. He’s losing the keys. So once he started on that journey he got his, he was his dad to an adult day program like I have, and he started painting.
[00:02:33] He was a saw mill work. And he started painting, never painted in his life. Now those paintings are, and they told the story of his life when he could not speak his paintbrush spoke for him. And I’m telling you, when you go, he has a book called a pocket guide for the Alzheimer’s caregiver, Daniel C pods, and his wife help him write it as well.
[00:02:58] Ellen. There’s things [00:03:00] in the back of that book or just one sheet things what to do. If this happens a little one sheet, it’s just great.
[00:03:07] Diane Hullet: I guess you get this kind of diagnosis. You don’t, you don’t really necessarily want to read a 200 page book. You want the page booklet that lays it out,
[00:03:14] Mary Ann Oglesby Sutherly: that lays it out.
[00:03:16] And so I would tell you, after the conference we had, I tell some people he’s 50% neurologist, a great neurologist. But a hundred percent caregiver and, and he was so good because he’d been there and, and was honest, such as he literally. Had to quit medicine for awhile after his dad passed, he said I had to take a sabbatical and medical sabbatical.
[00:03:46] I couldn’t. And that’s when he started writing poetry and music that went along with his dad’s art. It’s just incredible. So Dr. Pop has a website. It’s the good, great. Now I would forget it. It’s happening, you know, here [00:04:00] you are. It’s a. Lester’s art. It’s Lester’s legacy.com. Lester’s legacy.com and, and he, you can Google Dr.
[00:04:12] Patsy’s he’s in Alabama, but he’s a great, great guy. And. Those are my two people I go to because one speaks really from the heart. And so does Tepa they both both speak from the clinical side as well.
[00:04:27] Diane Hullet: We’re about to Deepa’s tipos PAC PAC
[00:04:31] Mary Ann Oglesby Sutherly: pack is called positive approach to care. That is positive approach.
[00:04:36] And that’s what she does best is be positive. How you approach people. So there’s many things that. And it’ll be on that side where you
[00:04:47] Diane Hullet: named it nurses, is it aimed at, it’s not
[00:04:49] Mary Ann Oglesby Sutherly: always everyone, it’s it, everybody, everyone, you know, she does the famous hand under hand that helps lead people. You can even help people eat with [00:05:00] that.
[00:05:00] So she. The PAC team, we call it the pack team is mentors and teachers and things, and that’s how we go and get our certifications is through that. And and actually we are a designated organization at the veranda. Now we’re the first one in Tennessee. She’s now. Giving organizations, memory cares, system livings in home care, medical care the ability to be certified as an organization, a PAC designated organization.
[00:05:27] So the veranda in November, we finally finished, COVID kind of chopped everything all up in order to finish that, but I’m thrilled because we’re the first respite program, first adult day program in the country that adopted what she does. And so
[00:05:42] Diane Hullet: Fantastic. So you’re, yeah, you’re really a model for what other care programs could do in terms of training their people in this positive approach to care,
[00:05:52] Mary Ann Oglesby Sutherly: you have to demand with dementia and it’s made me a better doula.
[00:05:56] And she’s the one actually that said, have you ever thought about. [00:06:00] Have you ever thought about, you need to your end of life. There is that, but how about dementia? They love Marion, you know, did that’s what you, that’s what you do, but you’ve got to have the training to understand the disease. And so, yeah, I mean, she’s been, there is no one that’s affected my career.
[00:06:19] I’m also a dementia care practitioner, but Tepe is way of doing. Has just intrigued me because it’s always been done with kindness. It’s always been done with mercy. She gives grace when it, you have to, but yet it’s for both. It’s for the. But you never leave out that person with dementia.
[00:06:40] Diane Hullet: Never. Yes. I love that.
[00:06:41] You talked about that in part one of our podcasts where you really said, you know, we get this diagnosis and then we kind of jumped to, oh my God, the ravages of dementia, but how does stay deeply in touch with that person? Whether that person is your mother or your brother or a friend.
[00:06:57] Mary Ann Oglesby Sutherly: Right. And as a doula, you know, [00:07:00] I’ve, I’ve told people, I said, You have to know that person a long time ago to get what end of life issues you want.
[00:07:09] I mean, you can’t go in six months before you just can’t. You have to know the locks and we have a lady I’ll now tell you how important this is. We did make overs one day and we put pink lipstick on her. Well, I didn’t know. She hated pink lipstick was, she goes in the bathroom, mad comes out, she’s wiped all the makeup off and she goes, ah, hate pink lipstick.
[00:07:32] Had I not known to go up and say, I didn’t even think about that. What was I thinking? I knew you liked coral lipstick. She goes, you weren’t thinking that’s what you were doing. You just weren’t thinking. And I said, you know, leave it to me to just make a mess of this, but I am so sorry. And she goes, that’s all right.
[00:07:51] Just to let it happen again. But then it got me to think. I hate red lipstick. If when I pass away, they put that cheap red lipstick on [00:08:00] me. I’m going to be mad. I’m telling you I hated it. I don’t know. I might just jump up and slap somebody. I don’t know, like
[00:08:09] Diane Hullet: such a simple example, but how do we capture our wishes?
[00:08:13] How do we capture our wishes, do
[00:08:15] Mary Ann Oglesby Sutherly: that. And you cannot do that with someone with. Right. They should do it earlier. You’d dated and families need to do it early. You need to sit mom down and, you know there was a. Video I watched the other day and they were talking about a physician that gave them the answer or said, you know, you’ve got Alzheimer’s dah, dah, dah.
[00:08:33] And, and you know, we’re going to start you on this medicine and this is what’s going to happen. Well, the person was sitting there. So when everyone left, they were just in overload. And I said, you know, I agree with taper sometimes on this, you need to say, we’ll talk about this in two or three weeks, go home and process the diagnosis.
[00:08:51] That’s right. Think about what you want. Think about how we’re going to do this. You’ve known you’ve had it this long. It actually starts in the forties. [00:09:00] Those are the times
[00:09:00] Diane Hullet: I actually started sooner. We just have now given it a name. So let’s say that name, read Tepa snow’s website, and then come back to the doctor.
[00:09:09] We get this
[00:09:10] Mary Ann Oglesby Sutherly: exactly and say, you know, we’d like to try this. We want to be proactive, but we don’t want to be overactive here. And so, and I will tell you, medications is one of the worst. Parts of my job is because in this country, there’s a few meds for a bunch of different things of dementia, different kinds of dementia, different quote, behaviors, unmet needs.
[00:09:33] And everybody seems to get a diagnosis in the same medications or no medications or too much medications. And so it’s a fun line near between. There is no pill that will fix it.
[00:09:46] Diane Hullet: Yeah. Boy, I have heard that we are running towards a great shortage of doctors who can fine tune that kind of medication, right?
[00:09:56] Like geriatric specialists who a have the [00:10:00] time be, have the expertise, see, kind of have that patient knowledge. Exactly. Cause you’re talking about fine tuning. You’re saying,
[00:10:08] Mary Ann Oglesby Sutherly: okay. So I will tell you that being said that. Geriatric at the conference, Dr. Potts, one of the questions in Q and a was, is it necessary for me to have a neurologist because they’re so hard to get into six months, eight months wait.
[00:10:24] Wow. And he goes, she said, we have a great dermatologist and he goes, geriatric, keep it, keep it. But here’s the deal of the Medicare reimbursement, to be honest, I’m always honest. Isn’t as good as. For geriatrics as it is for other things. So you don’t have many people going through medical school. I get it thousands upon hundreds of thousands of dollars.
[00:10:49] It’s hard to look at an entity or at a profession that you know, that, you know, isn’t as lucrative as [00:11:00] another one. And so, yeah, the geriatric that’s. So sometimes I be careful here. I think sometimes we’ve made it so hard. Yeah. We forced people to, we force people’s hands that we have to win. In fact, I’m telling you if I say anything today, I’ve never had one person would not stay at the veranda in 10.
[00:11:30] But one, and it wasn’t his fault. He’d been kept away for so long to put him in a social setting was not what he was going to do and to leave his wife, he was not going to do, but for the rest, we can work around and love on them and learn who they are, where they are, what they do, what they dock, what they don’t like until it, I’m not saying it’s not difficult some days it is, but we as a country have looked at it as such a.
[00:11:58] Disease that [00:12:00] no one can take care of. When it’s just not true. It’s just true.
[00:12:05] Diane Hullet: I think we can’t take care of, I think we can’t handle it in isolation. Like that’s what I’m struck by, right? Like if you’re a caregiver, if you’re the husband at home taking care of the wife, who’s going down the slippery slope or you’re solo aging.
[00:12:19] It’s, it’s really hard to do this in isolation. It has this in
[00:12:23] Mary Ann Oglesby Sutherly: community. It has to be in community. It has to be a group. And you know what the saddest thing is, everyone will tell you, number one, Most of them, the churches they went to, they never see again, first it starts with the person with dementia, not being able to go.
[00:12:37] The wife starts or family starts to stay. Then they go and then they forget who they are. They don’t. And then they’re sitting there all alone. And then family comes family. Doesn’t come the world the way the world’s changed. It’s not the Walton’s anymore. You know? I was blessed. I was raised with both grandparents great-grandparents I [00:13:00] live with them in the summer.
[00:13:01] I grew up with an aging population. I saw it all and it’s made me. I can hear my grandmother today saying, why are you brushing your tape with that toothpaste? That’s nasty that stuff’s going to kill you don’t drink Kool-Aid because that, that red stuff can’t be good for you. I was a little child. And what was red dye number nine.
[00:13:24] And Kool-Aid they took it away. So. Dumb, as we thought by word, they were pretty smart. You know, being mean. Yeah. They were trying
[00:13:34] Diane Hullet: to protect you the day. Many of us don’t grow up with those extended now and people that around in the U S especially. And so how do you get the care? How do you get the support?
[00:13:44] How do you find a place like your. You know, the veranda ministries has this beautiful respite daycare for people. What a gift for caregivers. I mean, I
[00:13:52] Mary Ann Oglesby Sutherly: just, it truly is. And they will tell you, and you know, it’s funny because there are families, they become families. [00:14:00] Matter of fact, after the conference, they said, we’re going to start having a veranda family meeting once a month.
[00:14:04] And we’re all going to go out to eat. So we give them that compassion. Listen, we’re nothing without the compassion for others, I don’t care what disease you have. But in dementia, you’ve got to find compassion for both sides, personal living with it person taking care of it. And without that compassion, we’ve got to figure out a way to do this better because I can honestly tell you, I don’t think it’s a bit better.
[00:14:28] 10 years. When I started, well,
[00:14:31] Diane Hullet: the incredible thing, what I’m struck by is just the numbers, right? Like, it seems like you do this amazing work and you serve 15 people at a time. So
[00:14:40] Mary Ann Oglesby Sutherly: that was Tennessee and that’s,
[00:14:44] Diane Hullet: that’s gotta be. And how many staff and volunteers is that taking to make that
[00:14:49] Mary Ann Oglesby Sutherly: work? I have one paid staff member besides.
[00:14:53] And then we have a host of volunteers, but they’re trained in positive approach to care. They are trained in [00:15:00] how to take care of people living with dementia. And that’s what we have to do. That’s how we have to train ourselves. We have to train families. We have to train new doulas. We have to even train.
[00:15:11] I’m going to say this. ’cause they really in Tennessee don’t get much training in dementia.
[00:15:17] Diane Hullet: No, of course not. And then all of that takes time. All of that takes money, multiply that by the number of people living with dementia and the aging generation that we have right now.
[00:15:29] Mary Ann Oglesby Sutherly: Exactly. It’s pretty daunting.
[00:15:31] Diane Hullet: daunting. And I love that you are. You know, you’re just kind of doing it one person at a time. I mean, that’s
[00:15:38] Mary Ann Oglesby Sutherly: all I can do. You know, I would love to have a veranda house. Somebody, you know, that’s our dream. I had someone tell me the day, okay, this is what we’re going to do. We’re just going to start. We just go start believing that someone’s going to walk up one of these days.
[00:15:50] I don’t have to be on church property, a veranda. House with rooms, a house with a porch, a house with a yard to where you can do much [00:16:00] better. And that’s what people with dementia need. They need the yard, they need the outside. They need the, the extra rooms where you can take them. They need all that. And so I believe one of these days it will happen, but I have, I didn’t believe 10 years ago, truly that I’d still be here 10 years.
[00:16:16] But if you do the right thing for the right reason, That’s our motto. God’s going to bless that. And he has, and so we’ve helped many families and they’re still friends. They’re still family. So, you know, I’ve spoke at more funerals in the last 10 years of my life because the families will say, you know what?
[00:16:37] You knew mama best, you knew mom better than I did. So I’m blessed. I’m blessed to get to do what I do. And so. It is what I’m supposed to do. It’s a good place to be.
[00:16:50] Diane Hullet: Is there any final kind of you know, words of wisdom that you would say to listeners about kind of how to cope with a diagnosis or how to cope with [00:17:00] caregiving?
[00:17:01] Mary Ann Oglesby Sutherly: You know what I, this is what I always tell everybody. The first thing you need to find a caregiver. You need to find someone that you can bring in and let them be a. ’cause there’s gonna come a time right now. Well, he doesn’t need it now, but he needs a friend and that relationship will stick. And when you need to go get your hair done and you can’t, or you want to go out to eat, there’s somebody already there.
[00:17:26] That’s a buddy and you need to do that. It is imperative. It is important. It is one of the first things you need to do. Second, I would say. Be open to doulas, be open to someone that can come in once a week, twice a week and say, how are things go and anything I can do for you as the spouse or the family?
[00:17:47] What can I do for him? Can I take him somewhere? Can I stay here? Why you go somewhere? Just be that nonmedical person that has the knowledge of the disease. That’s the key thing [00:18:00] to it. Always, always as soon as they can get on palliative care, palliative care. Because now we have it here in Galston and I’ve got nearly all of my non it, because it gets a nurse practitioner to you once a month and then have always hospice.
[00:18:15] That will be your friend when that time comes, do not be afraid of it, do not be afraid of it. And. That is my go tos. That is my and socialization. You’ve got to have socialization
[00:18:29] Diane Hullet: fabulous. Both for the person with dementia and
[00:18:31] Mary Ann Oglesby Sutherly: the caregivers. Yeah.
[00:18:34] Diane Hullet: Wonderful. Well, thank you so much, Mary. And this has been so interesting to discuss.
[00:18:39] I just think it’s a rich topic and a hard
[00:18:41] Mary Ann Oglesby Sutherly: topic. It is hard. And I know I sound sometimes like it’s old hat to me, but it really isn’t. I’ve cried. I cried yesterday over someone that came, it was sad. It is a sad, terrible disease. My job is to bring [00:19:00] joy to that disease in little bits and pieces. I can’t take it away, but ever so often we can have a breakthrough and somebody say, I love you.
[00:19:09] And the daughter will say, well, she never tells me. She loves me. But it’s a different relationship.
[00:19:15] Diane Hullet: It’s a different relationship. And how do we cultivate those relationships with
[00:19:19] Mary Ann Oglesby Sutherly: people? Exactly. We have to support them. Thank you so much, Marianne. You are more than welcome. Thank you.
[00:19:26] Diane Hullet: You’ve been listening to the best life, best death podcast. And this has been the end of a two part series with Maryanne Oglesbee southernly, the founder and executive director of the brand of ministries. I just think that Marianne brings a wealth of experience working very intimately with. Dementia patients.
[00:19:45] And she had two really good resources that I want to repeat here. One is a woman named Tepa snow who was really considered the expert in dementia in the us. She has a website. That’s got fantastic resources for families and caregivers, [00:20:00] T E P a. S N O w.com Tepa snow. And the other person she mentioned was Daniel Potts. [00:20:09] Who’s written along with his wife, a fabulous book called a pocket guide for the Alzheimer’s caregiver. So I highly recommend these two resources and I hope you enjoyed the podcast. Thanks so much. And you can find out more about me at best life. Best death.com. Thanks again.