[00:00:02] Rayna Neises: Welcome. This is Rayna Neises, your host of A Season of Caring Podcast, where we share stories of hope for family caregivers, breaking through the busyness and loneliness of life to see God, even in this season. Today, I’m excited to introduce you to my friend Gaylynn Green. Gaylynn is a wife, a sister, a therapist, a mother, a Gigi of 4 perfect grandkids.

[00:00:24] And Gaylynn works as a physical therapist assistant for an orthopedic surgeon. She’s also a member of Changing Minds Dementia Education Group who provides support and training to those in the community in need.

[00:00:37] Gaylynn has 17 years of helping seniors through their physical therapy regimes after injury or illness and is doing so, has extensive experience with dementia and Alzheimer’s. This experience turned personal in 2006 when her mom was diagnosed with Alzheimer’s and she spent the next 16 years caring for her and providing the best life possible.

[00:01:00] Gaylynn, I’m so excited to have you here today. Thank you for joining us.

[00:01:03] Gaylynn Green: Well, Rayna, thank you so much for inviting me to be part of your podcast. I really appreciate the opportunity.

[00:01:08] Rayna Neises: I would love to just start off by having you share a little bit about your mom and what your caregiving season looked like.

[00:01:14] Gaylynn Green: Okay, sure. I started noticing changes in her memory and in even in her cognition uh, problem solving things. The biggest red flag came when I had taken her to church. I. One Sunday, and on the way home, she got really angry with me because she kept insisting I was going the wrong way to take her home.

[00:01:34] Now mind you, she’d lived in that home for 60 plus years, so it, it was like, okay, this is it. There’s something really wrong here. I. The problem came when I took her to her general practitioner who just simply dismissed all of my worries and said, kept saying things like, she’s just stressed. There’s really nothing wrong.

[00:01:54] She kinda pat me on my head and say, go away little girl. She’s fine. So I dealt with this for probably two years before she had a little cardiac event and ended up in the hospital, and I begged the doctor there. I said, can you please look at her? There’s something wrong. I know there is something wrong.

[00:02:12] And so he in turn called in a, a neurologist who did some tests and some examinations and said, yes, indeed we are dealing with Alzheimer’s.

[00:02:22] Mom lived in Kansas City and I live in Wichita. It’s about a three hour difference. So the first 10 years or so we were able to keep her in her home.

[00:02:31] She did pretty well the first couple of years without any help, I would just go up every other weekend and fill her refrigerator and freezer with food and do her, her med planner or that sort of thing just so she could be there in her own home. It worked great. Well, as the disease progressed, that became clear that that wasn’t enough help.

[00:02:51] So I ended up having to hire somebody to come in and, and make sure she took her medications every day. And then that morphed into having somebody come in and prepare her meals and make sure she ate because she wasn’t eating and she was very thin. She’d insist that she was eating, but the food that I had prepared and brought was still in the refrigerator.

[00:03:11] So anyway, so we did that. And it gradually got worse to where I was hiring a caregiver that was with her all day. She was able to stay at home through the evening and be okay. That ended one January, it was like six degrees outside. It was really cold. And she called me like eight o’clock in the morning, which was really rare.

[00:03:35] I usually did all the calling, but she called me and said that she was cold, and I asked her, why, you know, mom, why are you cold? She said, well, ’cause it’s cold in here. I said, oh, okay. , why is it cold in there? I. So long story short, she had turned off the heater, the furnace, because

[00:03:50] Rayna Neises: Yeah, and

[00:03:51] Gaylynn Green: had decided somehow that I had told her it was unsafe.

[00:03:55] So she was there without any heat in this six degree weather. So I told her, no, no, immediately turn it on. So I said, put the phone down, go turn it on and come back and tell me when it’s on. So she did that. And I said, okay, now go get in bed and cover up and you know, wait, for it to warm up before you get up.

[00:04:16] Well, I hung up from her and called her caregiver, who raced right over to her and found out that indeed she had turned on the air conditioner instead of the heat. So it was still frigid cold in there. So that was the time when we knew we just couldn’t allow her to be there by herself anymore. We moved her down here with my husband and I into our home and she lived the last about six years here with us and we cared for her here.

[00:04:44] Still work full-time, so I did have to find a caregiver to stay with her during the day. And then we took care of her through the evening and through the night. So it was kind of a long process. We were, we were lucky in that she had a long, long dissent, you know, it wasn’t real quick and we could keep her at home and comfortable as long as we did.

[00:05:05] Yep,

[00:05:07] Rayna Neises: definitely you had those different roles as a caregiver, and just that first role, I always had that concern, you know, that we can’t quite intervene yet, but we know things are not quite where they should

[00:05:18] Gaylynn Green: exactly.

[00:05:19] Rayna Neises: Especially as children with adults, it’s difficult. You don’t have a right to step in and take over everything until you really know, there is something going on.

[00:05:28] So there was that fine line. And then that movement of knowing that she was progressing, but she was safe at home to that moment when it was like, Oh, okay, we’ve crossed that line now and then had to put another plan in place. And that’s part of why I always talk about seasons because there are even seasons within the caregiving season, right?

[00:05:49] Gaylynn Green: Oh, absolutely.

[00:05:50] Rayna Neises: role, but it looks different. And that intensive caregiving, can last at different lengths of time. But it sounds like even when she came and lived in your home, there were a lot of things you were able to continue to do. But then there were obviously changes that had to be made as well as you were caring for her.

[00:06:06] Gaylynn Green: true. Very true.

[00:06:08] Rayna Neises: thanks for introducing us to her and for that just a little glimpse into what that looked like. So tell me, what would be one thing that you would say was most surprising? About caregiving for you.

[00:06:19] Gaylynn Green: Probably the thing that really kind of surprised me, I didn’t think about it when I was planning to do this. There was never any real forethought. I just knew that I would take care of my mom forever, you know? I, and, and I’m sure you’ve heard this a million times, but I promised my dad on his deathbed, don’t worry, daddy, I’ve got mom, I will take care of her.

[00:06:39] And I it. So it was never a question I was gonna do it. My brother lives in Albuquerque, my sister lives in Tennessee, and mom was in Kansas City or then in Wichita. So it was me, but that was okay. That was a mantle that I gladly took up. I made that promise. So what what surprised me as it turned out was How isolating it was and how lonely it ended up being, even though ultimately I had a lot of hospice care come in, nurses and social workers, in and out.

[00:07:11] And I continued to work until, you know, pretty close to the end. But when we, when we first brought mom down here, my husband Steve and I, were very social people. We had a big social life, lots of friends. We had a bunch of friends that had campers, we’d go camping all the time and do different things.

[00:07:29] But as, mom got worse and she moved in here, we had to start turning down those invitations. And so, you know, every once in a while my daughter, bless her heart, would come and stay with mom. So we could go and do some things, but she has her own family and, and couldn’t devote a great deal of time.

[00:07:47] So we . We would have to turn those invitations down and they slowed down and then they were a trickle and then they disappeared. We just didn’t get those invitations anymore. And no fault of our friends, they knew we would have to turn ’em down, so they just stopped asking.

[00:08:03] Also, people aren’t always comfortable with somebody that has Alzheimer’s or dementia. They come into your home, they don’t quite know how to act when mom says something that they know isn’t right. Or asks maybe inappropriate questions. So, a lot of times invitations weren’t accepted as well, that I didn’t see coming. I don’t know why, but I didn’t.

[00:08:25] Rayna Neises: Yeah, I can see why you wouldn’t have anticipated that. And especially I don’t know about you, but when I 1st started traveling to Kansas City to take care of my dad, I kind of made a deal with my sister and said, let’s do this for 6 months. So, I don’t know what I was thinking was going to happen after that. But I’m sure you weren’t necessarily thinking this is going to last 6 years. And so, It definitely changes as you go. You have to adapt and do those things. And I do think it can be difficult because you’re just in a different season of life. And your story reminds me a little bit of like, whenever the 1st couple has a baby and all the friends are still free to go and do and, life just changes a little bit. They’re still people that you love and care about, but where you are in life is just different than it was before. And so it

[00:09:14] sounds like

[00:09:14] Gaylynn Green: analogy. Yes, that’s exactly right. Yeah. It’s not that they didn’t care about us, it’s just that they were living their life and we were doing things differently. So,

[00:09:26] Rayna Neises: yeah. you were on a different track for a while there. And I think again, we come back to that seasons, it’s only for a time and we don’t know how long it is, but there’s a season again that, you can pick back up and maybe have to find a little new friends circle. Cause they might be in a different season by the time that happens, but it is important. Realizing that that you’re not the only 1, but then also trying to problem solve how can I get that socialization met? How can I get those needs met? And I think it’s important. to do that. And sometimes I think we don’t even realize that’s what’s happening until we’re a long way down the path.

[00:10:03] Gaylynn Green: Right. That’s so true. So true.

[00:10:07] Rayna Neises: So tell us um, you have one favorite story you’d like to share with us about mom.

[00:10:11] Gaylynn Green: Oh gosh. Mom was such a character. . She, I like to say she was sweet and spicy. She, you know, she would do anything for anyone, but yet she had a very quick witt was just so much fun even to the end, you know. She for example We moved her. This is crazy, but we moved her in with us to keep her safe, you know, so she wouldn’t have any problems.

[00:10:35] About two weeks after we moved her in here, she jumped up one early morning and ran to the bathroom as women sometimes do early in the morning, and she hit the bathroom floor and her feet slipped out from under her and she fell to the floor and I heard it and I jumped up and ran in there. And I knew immediately she had broken her hip.

[00:10:56] So, yeah, it was, it was bad, but so , our neighbor down the street just happens to be the fire chief. He heard it come, go across the scanner and he got here before the paramedics or anybody did, and he comes in and then before long we had like six firemen in the bathroom surrounding her. She’s laying on the floor looking up at him and she’s like, oh man, I haven’t had this much attention in, in such a long time. And, and then one of the firemen, she was, the bathroom was small, so they couldn’t get the gurney in there, so they’re going to carry her out and put her on the gurney. So the one young fireman said, now, Mona, I want you to put your arms around my neck and, I’m gonna lift you.

[00:11:36] We’re gonna lift you. And she’s like, Oh my goodness. You know, she was just enjoying the, the male attention and she was flirting with him. And she looks at me in this big stage, whisper, he’s cute. And I’m like, oh, , this is So my mother, there she is. That’s my mom. You know? So it was really fun. And of course they got the biggest charge out of her.

[00:11:59] So I always kinda like to think about that even sometimes in the darkest times. Her sense of humor and her personality still could shine through, so I loved that.

[00:12:11] Rayna Neises: It’s fun to see those glimmers, especially in a disease like Alzheimer’s, we can lose so much of them, but there’s pieces that are still there and I, love it whenever they come through and. Sense of humor is a fun one. I know my dad really liked to just interact. I mean, that socialization, we know that ability to have that social conversation, that rhythm kind of sticks with them, but it’s funny that she would have that sense of humor all the way

[00:12:39] Gaylynn Green: yeah. And in the end, her, her hospice nurse was a, a cute young man, you know? And oh Lord, she loved that. He’d say to her when he’d get ready to leave, he’d say, now, Miss Mona, is it okay if I come back and see you tomorrow? And she’d point her finger at him and say, only if you stay good looking

[00:12:57] Okay. There, she’s, there’s mom . She was, she was just so funny. Yeah. He loved her. So, yeah, I,

[00:13:08] Rayna Neises: How has God shown up for you in that caregiving season? Can you think of one specific example?

[00:13:16] Gaylynn Green: boy. He has never ever failed to fill up my very empty cup . There were times when I would be so discouraged or so guilty, you know, like after a long day of working and come home, cook dinner, feed her her dinner, get her cleaned up, get her in her pajamas, get her in bed, and I, I made it a habit every night I’d take out her personal trash out of the bathroom and, and we live kind of in the country, so there would be just this sky full of beautiful stars and I could just stand there and, and look at him and soak it in and just feel him wrap his arms around me, fortify me and say, you know, this is okay. You’re gonna be okay. And this is what I intended, you know, and it would give me that assurance that I was doing what he wanted to do. I was honoring my mother and honoring my, my vow to my dad, and also giving me some assurance. I would feel so guilty sometimes because I would think when I was trudging out to the trash can to throw it away, I’d think how long can I do this? How long is this gonna last? I need this to be over. I am exhausted. And then I would think, what am I saying that when this is over, she’ll be gone. How could I dare think such a terrible thing? I don’t want my mom to go. But at the same time, I didn’t want her to live the way she was living either.

[00:14:52] It was just such a, as, I’m sure so many people couldn’t relate. It’s such a dichotomy. Don’t, you don’t want her to live the way she is, but you don’t want her to go. So anyway, I would feel, I would feel his assurance or there’d be some little sign and it sounds silly, I’m a nature lover. I would hear an owl hoot or the moon would be glowing.

[00:15:16] There’s some little assurance that, no, it’s okay. I am here and I’m watching and I’ve got you. That’s how I just felt, and he just gave me the strength I needed to go in and get some rest and start all over the next day.

[00:15:30] Rayna Neises: I love that. Thank you, Gaylynn, for being honest about putting into words that feeling, because I think so many times as caregivers, we’ve all had that thought and most of us don’t want to admit that we ever thought that much less that we would even, you know, that struggle of the guilt. There’s just, it’s just that constant pull, you know, that your life is demanding and different.

[00:15:52] And it’s normal to be like, oh, I really liked what I had before, but at the same time, like you said, that means they’re gone. You’ve walked them all the way home. You’ve finished that job. And I don’t think we’re ever ready for that. We’re not ready for them to be gone. So that’s, it’s a hundred percent normal, those feelings, but I love how you had a ritual.

[00:16:13] That every night was something that reinforced you and it, what reminded me of, almost like when the Israelites were wandering through the desert and God gave them just enough manna for that

[00:16:24] Gaylynn Green: Yeah. Yeah, true.

[00:16:26] Rayna Neises: they accumulated too much. It’s spoiled. They had to go out the next day, unless it was the Sabbath, they had to go out the next day and get what they needed for that day.

[00:16:35] And so I love the way that he just gave you that kind of a little wink and said, you’re doing good my daughter and just go rest and we’ll be here

[00:16:45] Gaylynn Green: right. Yeah. We’ll try again tomorrow to make it, you know, the best day possible for her. But you know, there were times when I would say my new mantra is Guilt is my new best friend. You know, because there was always something that I wished I could have done better or, or sooner or longer or whatever, you know. But I, for whatever reason, I did feel a reassurance from him when I was outside that, that it was, it was all good. So,

[00:17:15] Rayna Neises: that’s beautiful. And sometimes we can feel kind of small when we’re out in The middle of all of that, all of his creations.

[00:17:21] Gaylynn Green: stars and, oh, yeah.

[00:17:23] Rayna Neises: But he’s looking at you. That’s what I think. That’s cool. That he, that he pointed out that. Yeah, you know, this is a big open space and I created all this, but I see you

[00:17:32] Gaylynn Green: Yes.

[00:17:33] Rayna Neises: and.

[00:17:34] You’re doing

[00:17:34] well.

[00:17:35] Gaylynn Green: humbling. Yes. Mm-hmm.

[00:17:37] Rayna Neises: What would be 1 thing that comes to mind when you think about living content, loving well, and caring without regrets.

[00:17:46] Gaylynn Green: The one thing I would say is, You need to learn to do the best you can do and know that that’s the best you can do, and that it’s more than likely good enough. They’re, well, they’re safe, they’re fed. Some days that’s, that’s all you can ask for. So just, you know, give yourself a break.

[00:18:10] Ask for help if you can, when you need it. Try to get some backup help for days when you just are overwhelmed. But just like I said, just know that the best you can do is the best you can do. And if you can’t meet those basic needs to seek help, because there is help out there, if you can just ask for it.

[00:18:33] Rayna Neises: Yeah.

[00:18:33] it’s really wise. I think so many times we have such unrealistic expectations for ourself

[00:18:39] Gaylynn Green: Oh yeah.

[00:18:40] Rayna Neises: that if we were looking at our best friend doing it, we would never criticize what she’s doing. We would just be encouraging and you’re doing great. It’s okay. You know, but for ourselves, we don’t talk that kindly.

[00:18:50] Gaylynn Green: Absolutely. And that’s, that’s exactly right. I mean, why are we so much more kind to other people than to ourselves. I mean, I would never beat somebody up for something that I would beat myself up severely and that’s something that you have to learn not to do. Just be kind to yourself. You deserve it.

[00:19:09] You’re doing a very hard job that is exhausting and heartbreaking, and you deserve some grace.

[00:19:20] Rayna Neises: Very wise. So our time is wrapping up already. Do you have 1 nugget of truth? You’d like to pass on to our caregivers?

[00:19:28] Gaylynn Green: Well one piece of advice that quickly comes to my mind is kind of what I said in the very beginning, that if you can’t get somebody to listen to you, if your intuition is telling you that there’s something wrong, As a family member, as a daughter, or even as a close friend, you’re probably right, if that doctor won’t listen to you, please try to get somebody else to listen to you.

[00:19:50] Find somebody that will listen to you. I know sometimes it’s difficult to get your loved one to go along with it, but don’t give up. Keep trying because until you get a proper diagnosis, the help that you need may not be available. So keep looking till you find somebody that’ll listen to you and validate your concerns and help you with them.

[00:20:13] Rayna Neises: That’s so important. I know we struggled with that as well. My dad had cancer and had a melanoma removed and then developed MRSA in that wound. And so that infection was kind of the beginning of a really big downturn for his daily living activities, his independence in that. And so from that point, we needed more help.

[00:20:38] But from that point, we also found that he would have bouts of infection that we couldn’t find. And he would just go overnight he would change and we would take him to the emergency room and we would be like, okay, this is not normal. He couldn’t walk straight or he wouldn’t be able to sit up.

[00:20:57] And it was like, Like, yesterday, we were at the gym, you know, I mean, this is like, totally not normal and I will never forget standing in an emergency room talking to a doctor who said, well, his urine cultures came back fine. He’s not running a fever and his white blood cell count isn’t elevated and I looked at that doctor and I said, are you telling me that it is impossible for someone to have an infection and not have an elevated white blood cell count? It was kind of silence, and he just kind of looked at me. Well, it’s very rare. And I said, well, the magic is when we give him an antibiotic, he suddenly becomes himself again. So, if it’s not an infection it’s something that an antibiotic helps, you know, and we left that day without an antibiotic. And that was the beginning of just, you have got to be kidding me.

[00:21:51] We have to do something different and finding that that general practitioner that actually listened and was willing to say, okay, we’ve had MRSA. There’s something going on that we can’t explain, but antibiotics help, you know, and letting us have that person who really would listen and say, I hear you as a caregiver, you know, him better than anyone else. And you’re telling me things are wrong.

[00:22:17] Gaylynn Green: That. Oh, that’s golden. That’s exactly what I’m trying to say is find somebody that will listen to you and that will give your loved one the respect they deserve. The doctor that I had from mom was very good about, he’d get right down in her face. We’d talk about things. He could write down her face and say, now, Ms. Mona. What do you think about that? And she’d say something that was completely unrelated, but he would listen to her like she was, you know, telling him such an interesting story. And I just, I will love him forever for giving her that respect.

[00:22:48] Rayna Neises: It is hard I’m sure I’m not a doctor. So I don’t have to keep that schedule. I don’t have to follow the protocols. I don’t have to worry about all those things. But as a family caregiver, that’s part of what’s so frustrating is all of those things get in the way of taking care of your family members sometimes.

[00:23:05] And both the respect for you as a caregiver, you’re just and the respect for your loved one, you know, needs to be there. And sometimes there are limitations. Sometimes they’re a long wait list to get a new doctor, but I think it’s worth trying. And we personally found going to private practice is what helped us.

[00:23:23] We found a concierge doctor. So she didn’t have to worry about the insurance saying, why did you do it that way? Or why didn’t you order this test before that test, you know, that kind

[00:23:32] Gaylynn Green: Mm-hmm.

[00:23:33] Rayna Neises: But you have to just keep looking and. Keep seeking someone who will really listen to you. I think that’s really important.

[00:23:41] So thanks, Gaylynn. It’s been great to visit. We’re just going to close out here. Listeners, I really appreciate you joining us today and I appreciate Gaylynn just sharing her journey of caring for her mom and walking her all the way

[00:23:54] Gaylynn Green: home

[00:23:54] Thank you so much, Rayna.

[00:23:57] Rayna Neises: Thank you for joining us today to hear stories of hope with Gaylynn. This episode has been brought to you by Content Magazine an electronic online magazine available today to help you find God in the midst of your caregiving season. Take a moment to take that deep breath, find him, and then jump back into your caregiving life. You can learn more at contentmagazine. online.

[00:24:20] A Season of Caring Podcast has been created to share stories of hope for living content, loving well, and caring without regrets. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation