[00:00:00] Betsy Sloan: I guess that was my aha moment or my epiphany that I cannot let this disease destroy me. I can’t. And I tell caregivers. Yeah, that would be really easy for me to sit here in a heap. Right? I feel sorry for myself, but that’s not gonna do me any good or anyone else, any good.

[00:00:19] Rayna Neises: Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises your host. And today we have guest Betsy Sloan. Betsy’s a retired, licensed practical nurse and teacher’s aid. She’s the mom and an adult son with special needs and his caregiver. And she has experienced Alzheimer’s in multiple relationships from her mother-in-law first to her dad and finally to her husband. Matt had early onset Alzheimer’s at age 56. Matt’s journey changed her life for the better. She found her gifts, power, and her voice. Matt’s journey was a battle from getting a diagnosis [00:01:00] to getting proper hospice care.

[00:01:02] She went into her car to raise awareness of Early Onset Alzheimer’s which at that time there wasn’t much information available. The doctor said that Matt was just too young. She started talking about caregiving and showed and shared Matt’s journey. In September of 2019. Betsy was given her own show chatting with Betsy. She’s the creator and founder of Kick Alzheimer’s Ass Movement Group on Facebook. Matt passed in June of 2020, and she told him she would carry on her work and honor his memory. Her mission is for no one to walk this journey alone during caregiving or after. Welcome Betsy, thank you so much for being here today.

[00:01:44] Betsy Sloan: Oh, thank you Rayna for having me. I appreciate.

[00:01:48] Rayna Neises: So in your bio there, it mentions you went to your car. Tell us more about that.

[00:01:54] Betsy Sloan: Yes, that’s kinda funny. I could laugh about it now. I . [00:02:00] I went into my car to raise awareness because I was mad. People would say, Betsy you’re brave. No, I wasn’t brave. I was just mad and angry and I had to channel my anger. I used into a positive and it became my passion. I wasn’t gonna let Alzheimer’s destroy me and my anger to destroy me.

[00:02:22] So I went in my car and started to show Matt’s picture and say, this is the face of Alzheimer’s and disspell the myths, it’s not an old person’s disease. It is not a natural part of aging and then I started talking about caregiving. Never thought anyone would listen to me I was like, it was me. And I was surprised. I was really surprised and it’s I would get Rayna overwhelmed

[00:02:52] Rayna Neises: mm-hmm.

[00:02:53] Betsy Sloan: with people’s comments saying Betsy. You’re saying what I feel, but I won’t say, and I’m a Jersey girl, so[00:03:00]

[00:03:00] Rayna Neises: you say it all?

[00:03:02] Betsy Sloan: Yes. And my father’s daughter, so very straight up, you know, and I, I was not gonna sugarcoat this disease at all for anybody.

[00:03:12] Rayna Neises: You know, as I look back on our journey after losing my dad in June of 18, my sister and I, of course, went through the family home and cleared things out and sold it. And we found some things from my dad. And one of the things that I think made me so sad was finding some journal writing that he did while he was caring for my mom.

[00:03:33] My mom was only 53 when she was diagnosed with Alzheimer’s back in 1986. He went through that journey very much alone. We supported him as much as he would let us, but those deep down emotions, he really did keep him to himself. And I think so many caregivers don’t know what to do with those emotions. So I love that you channeled it in a way that not only helped you, but also has been helpful to others.[00:04:00]

[00:04:00] Betsy Sloan: Oh, thank you. I also went for counseling, that helped too.

[00:04:03] Rayna Neises: I’m sure. Definitely. There’s no reason for us to do it alone. So you have a support group. Tell us about that.

[00:04:10] Betsy Sloan: Yes. I created and founded a #KickAlzheimersAssMovement and people say, why did you name it that because there’s other, you know, dementias? And I said well, cuz Alzheimer’s affected my family. And I was in a dark hole, a rabbit hole. And I said, there’s gonna kick my rear ender. I’m gonna kick it rear end.

[00:04:33] I was actually thinking how the railroad tracks were uh, at work winter versus summer, I would never would have committed suicide, but while I had these thoughts, I don’t know. I was in such a dark place. I didn’t wanna face what was coming.

[00:04:48] Rayna Neises: Yeah.

[00:04:48] Betsy Sloan: And I said no, I’m not gonna leave my family. I could never leave my family. And I gotta get out of this hole. I’d never go back in and kick its butt. And people will say, well, how do you kick [00:05:00] it Betsy? I go, you know how you kick Alzheimer’s butt? You live your life. You go live your life and enjoy life. And your loved one with a diagnosis, you take them out as much as possible.

[00:05:13] Do the things that you can do while you still can. And don’t sit around and wait to die. Don’t sit around and wait, or wonder how am I gonna live through this? How am I going to get through it? Just enjoy the time you have with your loved one. And. Be, I know it sounds cliche, but just be aware, be mindful of your time and love up on your loved one.

[00:05:41] And that really, I, I guess that was my aha moment or my epiphany that I cannot let this disease destroy me. I can’t. And I tell caregivers. Yeah, that would be really easy for me to sit here in a heap. Right?. I feel sorry for myself, [00:06:00] but that’s not gonna do me any good or anyone else, any good.

[00:06:03] And there’s so much work to be done. As you know, Rayna with caregivers supporting, it takes a village as you know, cause you went through it and I don’t want anyone ever to be alone like I was. I didn’t have any support for 14 years with different people who had, Alzheimer’s and it’s, it was tough.

[00:06:23] I almost, I almost had a nerveous breakdown. I mean, I will admit that. And then I went for counseling and I highly recommend going for counseling. And I said, you know what? I never saw myself as the leader. And I’m like, I can’t do a group. I was gonna wait until after Matt died. And someone said to me, Betsy, you can’t, people need you. Now we need a group now.

[00:06:45] And so my friend, Lori LaPaur her sister was dying of Alzheimer’s and she said, I’ll help you. I met Lori through a support group. So I was, I, I still can’t believe it. still [00:07:00] can’t believe that I do what I do. I mean, if anyone would’ve told me a few years ago, I’d be a talk show host. I’d be like, no way. no way

[00:07:11] Rayna Neises: Well, and I think one of the benefits of this disease, there are not very many, but one of the benefits is really understanding today’s probably about as good as it gets.

[00:07:22] Betsy Sloan: Mm-hmm

[00:07:23] Rayna Neises: And realizing that it’s not perfect. It’s not what we had before that relationship with our loved one, or being able to go and do the exact same things we’ve done before, but today’s the best day you’ve got because tomorrow there’s probably gonna be some sense of progression and it might not be tomorrow, but it’s gonna be faster than you realize it.

[00:07:43] I think one of the things that while you’re caring the timejust gets so confusing. You think you’re going along fine. And then all of a sudden you realize, oh, he hasn’t said my name. I wonder how long it’s been since he said my name. Those things that disappear, they disappear whenever [00:08:00] they’re gonna disappear. And so the one thing I think that can really help us with Alzheimer’s is knowing that today’s the best day we got. So let’s do it now. Let’s go ahead and, take advantage.

[00:08:11] Betsy Sloan: That’s true. Very true. And I mean, even during the course of a day, you know, how things change and you had to develop a sense of humor. I developed a dark twisted sense of humor. My husband, Matt would be would be, um, when he started to hallucinate too. He would say to Josh and I you’re the best. I love you guys. Thanks for helping me in the next minute. He’s cursing us out.

[00:08:37] Rayna Neises: Mm.

[00:08:38] Betsy Sloan: You had to laugh. what are you gonna do?

[00:08:40] Rayna Neises: Yeah. So hard. And at the same time, it sounds like you found yourself in a really deep dark place and you found the help that you needed to get out of that. So how did that then help you take care of yourself better from that point on?[00:09:00]

[00:09:00] Betsy Sloan: I had to learn. I had to take care of myself. Take time for me, whether it’s um, I used to go in the bath tub, listen to John Denver and to pretend I was in the mountains and fantasized about the mountains, the beach, whether it was deep breathing, going to the mall for a few hours. It’s very difficult for caregivers because I would feel guilty.

[00:09:26] I’m taking time away from Matt. I’m not spending it with him. I should be spending it with him, but yet I need to recharge my batteries. And I have to say this because I say this all the time, caregivers, self care is not an option. It’s a matter of life and death that’s how serious it is. It’s your life. It be your death. The mortality rate with caregivers are so high. You have to take care of yourself. You have a right to enjoy life during caregiving. You have a right to enjoy life after caregiving, and if you wanna [00:10:00] enjoy it, you have to take care of yourself. Make the time. And don’t I tell people don’t be like me. Learn from my experience. Have people to help you.

[00:10:11] Rayna Neises: Mm.

[00:10:12] Betsy Sloan: I wish I did. I wish I, especially with hospice picking hospice out, I wish I hired somebody.

[00:10:21] Rayna Neises: So tell us more about what support you did have and what support you didn’t have.

[00:10:27] Betsy Sloan: Well, in 2014 I joined Facebook and I went crazy joining support groups cuz they didn’t have any. And I went, wow. There’s people who actually feel the way I do. I’m not the only one. And I learned from other caregivers cuz we teach each other and people were some of them were underground support groups cuz they were embarrassed or ashamed to say how they really felt. And afraid of being judged. And I learned that, you know what? It’s okay not to be okay. [00:11:00] Which is, I know another cliche, but you know what? You’re gonna feel sad. You’re gonna feel depressed. It’s normal. And, you know, I thought I had to be the superwoman I worked I took care of Matt, took care of the house. I took care of my son and I thought I had to be able to do it all and keep smiling. And I’ll tell you what, what drives me nuts? Like I said, I’m a Jersey girl, please people if you’re not a caregiver don’t tell other people to be strong.

[00:11:28] Don’t tell ’em that because I’ll tell you what, you’re a caregiver. You are strong. We are human beings. We’re not robots. And we will cry when our loved one is dying. We will cry. It is not weakness and is not weakness to go for help. And I want your audience to know that it’s okay if you need to take antidepressant, it’s okay to go for counseling. I go for grief counseling now I’m not ashamed. It’s hard when you lose your spouse, it’s hard when you lose your parent and [00:12:00] definitely a child.

[00:12:01] I mean, I’ve hope that God had never had that pain, but you know, it, there is, it is a sadness and your heart’s forever broken, but life does go on. It’s not the same, but it goes on. So. That’d be a whole nother show, right? I’m dealing with grief. What people say, you just wanna, like, say stop

[00:12:26] Rayna Neises: Yep. We need to do better at listening versus offering advice. Don’t we

[00:12:31] Betsy Sloan: yes. Um, I videoed Matt’s journey and people would like, when Matt was dying would say to Josh and I be strong. Why. Why do I have to be strong? And my mom would, would tell Josh, be strong for your mom. And I go, please do not tell him that he has a right to cry. His father is dying. He’s losing his dad. He has every right to cry and show emotion.

[00:12:59] That’s [00:13:00] how people end up being sick and snapping because, you know, we need to validate our feelings and acknowledge our feelings and, and it’s okay. And I had to give this advice, cause my counselor gave me this advice few years ago. He said, Betsy, it’s okay to have a pity party, time your timer for 15 minutes

[00:13:22] Rayna Neises: That’s right.

[00:13:23] Betsy Sloan: and move it along. Best advice I ever had.

[00:13:26] Rayna Neises: Yeah. Yeah, I totally agree. I tell people that too, set your timer, be as sad as you want, cry as much as you want. Talk about how unfair it is. It that is normal. There is all of those emotions are inside of us. And if we don’t process those emotions, they just bubble and fester and turn uglier. And so if we allow ourselves a set amount of time, once that timer goes off, I always say, get up and do something.

[00:13:51] Make one step in the right direction for that day and it will change everything. So that’s such a great thing to mention, [00:14:00] because I think even in our caregiving journeys, there are small losses we have to be acknowledging. So the end of the journey is a, is a very difficult place to be, but in the middle as well, because if we don’t acknowledge those losses throughout the journey, it makes the end even worse. I think.

[00:14:19] Betsy Sloan: Yes. And each scale lost. We grieve,

[00:14:23] Rayna Neises: Mm.

[00:14:25] Betsy Sloan: you know, when they took away Matt’s car. It’s sad to give away his lawnmower when he’s still alive.

[00:14:32] Rayna Neises: Yeah.

[00:14:32] Betsy Sloan: It was it’s you do you know, and Matt no longer cut his food and I’m cutting his food. Ordering for him in a restaurant. I still worry, you know, what, what do those people think that I’m ordering for him. But then I went, you know what? I don’t care if I don’t stare at me and you think whatever they want you just can’t care what people think really.

[00:14:54] Rayna Neises: Yep.

[00:14:54] Betsy Sloan: It’s really none of our business. That’s what I was told. None of your business, what people think. [00:15:00] That’s helped me a lot.

[00:15:03] Rayna Neises: Yeah. So it sounds like there’s quite a few things that you learned with your self-care. You learned what things helped to rejuvenate you like the bathtub and the taking time to deep breath and to meditate and even to take a vacation in your brain, it sounds like. Another self-care item was getting help and going to counseling and being able to work through something with a professional.

[00:15:24] What other self care tips do you have?

[00:15:26] Betsy Sloan: Take care of your health. Don’t put on a back burner there. It’s so sad. I knew this woman literally, she dropped dead and her husband had Alzheimer’s. I was crushed. I, I couldn’t even believe it. Take care of your physical mental health knew a caregiver who committed suicide.

[00:15:47] Rayna Neises: Mm

[00:15:48] Betsy Sloan: Caregiving is a hard journey.

[00:15:50] And I learned that I had to take care of myself mentally and physically. And I couldn’t not let this disease beat me down and it’s easier said than done. [00:16:00] I know that I walked it. We do have to take care of ourselves. I, I tell you Rayna I say this cause I have fibromyalgia. I suffer from migraines. And I have to give God the glory, I believe in God. And that’s where I got my strength. I, because there’s, I don’t know how I did it otherwise, there were days where I could not even move.

[00:16:27] Rayna Neises: Wow.

[00:16:27] Betsy Sloan: I was exhausted and God just gave me the strength to go on.

[00:16:34] Rayna Neises: I’m there with you girl, if we don’t have the Lord, I don’t know how we make it through these times. So definitely number one right there, prayer and just realizing that we aren’t alone because we have him for sure.

[00:16:47] Why do you think that it’s important for caregivers to educate themselves on their loved ones, diagnosis or illnesses?

[00:16:55] Betsy Sloan: So that’s a great question. Knowledge is power, as they say. You [00:17:00] have to know what to expect. And I know reading about it and seeing it is two different things. I didn’t know about Alzheimer’s or sundowning or hallucinations with my mother-in-law, that was 20 years ago. There wasn’t much information at that time.

[00:17:20] Now there’s a lot of information even with, during Matt’s journey there was more than when his mother had it, but still not like there is now, especially when the pandemic happened and everybody was hitting, Facebook and doing free webinars and everything. It’s very important to know what to expect and how to handle it.

[00:17:39] How are you gonna handle hallucination? And trust. Believe me. It’s very important to know what to do. You do not want to tell your loved one. That’s not really happening, cuz you’re just gonna cause more anxiety and more stress for both of you. But you wouldn’t know that unless you. We’re knowledgeable know about the [00:18:00] medications, know about the side effects. Don’t be afraid to be a pain and to question a doctor, question nurses and be an advocate. That’s another thing I didn’t know. I was

[00:18:12] Rayna Neises: Yep.

[00:18:13] Betsy Sloan: I was always being an advocate beginning with my son who had special needs. If I didn’t speak up for Josh, no one else was going to, if I don’t speak up for Matt, no one else was going to and I really had to battle.

[00:18:25] From getting a diagnosis to the end, his life was a battle, which was unfortunate, but I was not afraid to speak up. Matt’s primary care doctor. This is funny. Like I said, I laughed now. He said, Betsy, you have nothing to feel guilty about. He said, believe me, I know you were an advocate. He goes, I know you were an. As he knew I had a big mouth. I’m tiny I’m sure. But I got a big mouth . You have to set boundaries too, as a caregiver. I always say this, you know, your loved one and go with your [00:19:00] instinct, go with your gut instinct. And I’ve always done that. I worked as a nurse, so I, I do have, I guess, natural instincts And, you know, just for instance, the hospice didn’t believe me that Matt was dying. They didn’t believe me. The medication wasn’t working, they didn’t believe me that he was dying. That was mess. I told that hospice nurse Matt’s dying. No, he is not. I said, yes, he is. Now he’s walking, talking and eating as well. Actually, he’s not walking. He’s shuffling with the help of two people. And he is eating baby food and losing weight. Two weeks later, he was gone

[00:19:40] Rayna Neises: Wow.

[00:19:41] Betsy Sloan: and I told her, you have to think outside the box, think outside your textbook because not everyone is gonna fit a textbook picture. And I think all hospices should be educated. The younger a person is, [00:20:00] and especially now as more young people are being diagnosed, they may be walking around and dying like Matt was, and they’re not gonna be, may not be bed until near the very, very end and like Matt was.

[00:20:17] Rayna Neises: I know that was one of the things that surprised me. Neither of my parents progressed to fetal state before passing. Neither one now. I mean, obviously within days of passing, they were quiet and you know, didn’t eat, didn’t talk all of those things, but neither one of them progressively went to that final stage that we hear about within Alzheimer’s. So there’s a percentage of them out there. And it is interesting because so many people just assume they’re not dying until they get to that place. But my dad, had a blood clot and so. Just his body just got tired. So it wasn’t really the [00:21:00] Alzheimer’s progression that brought into the end as much as it was that his body just couldn’t heal from the surgery and all the trauma that it had. I think many times we just, like you said, we’re expecting it to look one way and it really doesn’t. It’s not, nothing looks the same for everyone.

[00:21:19] Betsy Sloan: Right, right. My mother-in-law, she was in a facility and she was walking around and I guess they, you know, got them ready for bed and they found her dead in the bed. So she didn’t have that transitioning. My father didn’t. He just had trouble breathing and that was it. But with Matt was different.

[00:21:41] Rayna Neises: mm-hmm

[00:21:41] Betsy Sloan: I saw the dying process and it’s weird Rena, because I worked as a nurse, so I saw people die, but I never saw someone die like Matt did. The transitioning and I think we need to all learn about the dying process. What does that look like? [00:22:00] And I don’t mean to sound Mor, but we really need to learn about that because people have misconceptions, you know, about hospice, oh, hospice starves them or hospice kills them. No, when you’re dying, your body doesn’t need food or liquids.

[00:22:17] Rayna Neises: right.

[00:22:18] Betsy Sloan: And it would actually do more harm. And I, I did feel guilty because Matt didn’t have any IVs and I think, oh, well maybe if he had an IV, it would have, it would’ve been better for him, but no, that’s that, wasn’t the case.

[00:22:33] Rayna Neises: Yeah. It is such a difficult thing to walk our loved one all the way home, especially because there is such a lack of understanding. And I agree with you it’s not anything that we want to learn. Not anything we want to have to read up on or, or gain more knowledge about, but it’s definitely something that will be helpful because all of us are going to reach that point. We’re walking all [00:23:00] up to one home and one way or another it’s happening. so I, my sister and I went and saw Downton Abby, we’re big Downton Abby fans. And after the movie was over, I said to Robin, I said, I’m so sad. That was such a horrible death scene. The, the matriarch passes away and she’s in her bed and she’s all looking lovely and she’s talking to everyone and she says, her final, goodbyes. And then she just closes her eyes and she’s gone. And I’m just like, Does it ever work like that?

[00:23:36] We don’t have a good idea of what it’s like. And so I do, I agree with you, Betsy finding some knowledge and some understanding is important and. We only had a very short time with hospice and so we did not have the education that I wish that we had. I, my daughter-in-law Aly who used to be my co-host is a hospice nurse, and I know she does an [00:24:00] amazing job of educating her families. There’s some great companies out there, some great people out there that can really help families with that. But. I think even before we reach there, it’s good to learn and to, to build an understanding of it.

[00:24:15] Betsy Sloan: Yes. Yes, definitely. And you know, you could afford to hire consultant. Highly recommend doing that. Don’t wait till you’re at the end of your rope. Like I was the doctor recommended the hospice added our local hospital and I knew they had a hospital unit case Matt needed it and he did, and I went with them and didn’t research other companies. And I mean, the hospital part was very good. It was a home care that really was bad. Very bad.

[00:24:46] Rayna Neises: And like every job there’s good ones and there’s bad ones and everything. So it is difficult but I always just encourage people if you’re not connecting with the person that you have hired. They are your employee. You can fire them. [00:25:00] So find someone else, don’t hang in there hoping that it gets better, but find the one that works best for you.

[00:25:05] So well, Betsy has been a great conversation today for my listeners. Tell them about how they can hear your show.

[00:25:13] Betsy Sloan: Sure. The name of my show is Chatting with Betsy and it’s on Spotify, Streaker, Apple, Pod chaser.

[00:25:21] Rayna Neises: And you’re available on Facebook with your group.

[00:25:24] Betsy Sloan: Yes. Thank you. #kickAlzheimersAssMovement is on Facebook. Everyone’s welcome to join. I don’t discriminate. Alzheimer’s doesn’t discriminate. Neither do I so everyone’s welcome from all walks of life.

[00:25:39] Rayna Neises: Well, thank you again for being a guest today. I think we’ve had some really valuable conversation today.

[00:25:45] Betsy Sloan: Well, thank you for having me Rayna. I appreciate it. You’re a doll. You’re a great host.

[00:25:50] Rayna Neises: Thank you. And just reminder, a of caring podcast is created for the encouragement of family caregivers. If you have financial, legal or medical questions, be sure to consult your [00:26:00] local professionals and take in your season of caring.

[00:26:07] This episode of A Season of Caring Podcast has been brought to you by No Regrets: Hope for Your Caregiving Season, available at all major retailers. Teepa Snow, founder of a Positive Approach to Care shared. “Every page of Rayna Neises’book is filled with wisdom, compassion, and profound insights. Reading it is like walking alongside your best friend, only this best friend has embarked on the journey before and is now alongside to support instruct, encourage, and motivate you. Her intentional approach to caregiving will broaden and deepen your own experience, enabling you to also discover the joy and satisfaction in caring for another. In No Regrets, Rayna going to shares the beautiful, heartfelt story of caring for her parents and her passion to assist other caregivers.” If you would like to pick up a signed copy of no regrets. Visit [00:27:00] no regrets-book.com and purchase a special bundle I’ve created just for you.