The journey with dementia: A caregiver’s perspective (podcast transcript)

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Quote graphic for The Journey with Dementia: A Caregiver's PerspectiveHaving a loved one diagnosed with dementia takes a toll on their families, especially the caregivers who are with them throughout their journey. Family members must carry out their daily routines while simultaneously caring for their loved ones who have dementia. Because you are seeing your loved ones slowly succumb to the disease, it can cause stress, anxiety, and emotional suffering. It exacerbates the pain if you have little knowledge and information about the illness since some medical practitioners are unable to give you guidelines and plans for treatment.

In this episode of our “Life, Death and What Matters In Between” podcast, Perry Limes talked with Alice Jo Weaver and Cathleen Rawlings, the caregivers for their loved ones who had dementia. They shared what they experienced, the challenges, the suffering as well as lessons  when taking care of loved ones that had dementia.

Click here to listen to Episode 4 of Season 1 of  “Life, Death and What Matters In Between”


Perry: Good afternoon and welcome back to Life, Death, and What Matters in between. I’m your host, Perry Limes, and I am joined today by Alistair Weaver and Cathleen Rawlings. Thank you, ladies, for joining us today. And on today’s episode, we’ll be doing the journey of two men with dementia, from a caregiver’s perspective, as we’ve done in the past episodes. I’d like to welcome Alice Jo and Cathleen. But before we get started, I just want to. You know, learning about your personal stories as caregivers in every episode to help us better understand an individual’s journey with dementia. We’ve been discussing a composite case scenario and talking about Joe, our 66-year-old African-American male who’s been dealing with dementia for a couple of years, and his wife of 40 years, Veronica, who is his primary caregiver. Joe and Veronica have adult daughters who live out of state but are very active in both Joe and Veronica’s lives. Today, we are grateful to learn about caregivers from both a wife who cared for her husband and a daughter who cared for her mother. So with that, Alice Jo, let’s start with your journey as a wife and a caregiver. Thank you so much for joining us. Can you share a little bit about your husband’s journey with dementia?

Alice Jo: When my husband was diagnosed in August of 2019. I’m sorry, 2020. And in retrospect, there were symptoms and clues much sooner than that. I would say probably two or three years. And at the time he was diagnosed, it’s not that it was a shock, because by that point we thought that there was something that we needed to address. But he passed away last November, and that’s only a year and a half in our understanding from the specialists and everybody else. And everything that we read was that dementia and Alzheimer’s are very slow, and progressive, and we did not find that to be the case at all. So our journey was very difficult and it was like a roller coaster ride, truly. There were things that happened very quickly and it seemed at times that we were running to catch up.

Perry: That’s so. So with that, what were some of the biggest challenges that you face with your husband as you started to see things decline?

Quote graphic for The Journey with Dementia: A Caregiver's PerspectiveAlice Jo: I had to get very creative because I was determined that my husband would live his best life and we communicated all the time. We were very honest about what was going on and how we were feeling and what we were going to do. And at no time did I ever make a decision or make a movement that he didn’t say, okay, that it was all right with him. The challenge was trying to. Keeping his life as normal as possible as things were progressing, when he wasn’t able to walk as much, when his speech started to be difficult, when he couldn’t write, when he couldn’t write a check and I had to step in, I asked, Do you want me to do it? And he said, yes. When he couldn’t read anymore, when he couldn’t do the affirmations that he’d been doing for like 19 years, he couldn’t read. It was and I tried in every way I could to make things possible with books on tape, and walkers when he needed it. Different types of walkers, the different foods that he was able to handle. That all of those things were a great challenge.

Perry: Wow. And I know you were talking about his articulation. Was he able to articulate with you some of his own challenges and what he felt like he couldn’t? Because obviously, you know, being a husband, being a father, you know, he’s been providing and caring his whole life. And then it’s challenging when not only you can’t fear for the people you love, but it’s challenging when you can’t even care for yourself. How was he able to articulate that to you at any stage?

Alice Jo: In a manner of speaking, yes. As I said, we discussed everything, but. It was hard for him to truly grasp what was happening with him because it was so quick. I know it bothered him, but he never at any time expressed frustration until the very end. Several weeks before he passed, he looked at me and said, I can’t wait until I can get out of this bed and do this on my own.

Perry: While.

Alice Jo: He knew very clearly. He was a very intelligent man and he knew very clearly what was happening. But. It was knowing that. It didn’t allow him to accept it. And he was very gracious about it. He was very appreciative of everything that everyone did for him. He loved when his family was around him. But getting that specific other than a few comments along those same lines, he didn’t want to go into it too much because he would have to acknowledge and admit it and he was going to fight it till the end.

Perry: He’s a fighter also. So so, Cathleen, why don’t we discuss your journey as a caregiver and also as a daughter? You know, could you share about your mom’s journey and what you saw from that vantage point as well as your dad?

Cathleen: Sure. So, you know, my mom’s journey was a little bit longer than yours. Your husband was probably about ten years old. She was 62 when we started noticing some changes. And she was still working at that point. And they were going to have a new computer system. And she said, Oh, I’m just going to retire. That’s just too complicated for me now. We’re like, okay, man, that sounds okay. You know, I understand not wanting to start something new. But very shortly after we started to see some other changes, you know, she would forget where she parked her car, you know? And at first, it’s like, oh, everybody does that once in a while. But then when she had to call my father to kind of come get her and they had to go through the whole parking lot. So there were quite a few years of that, I would say probably about three or four years where she was just sort of covering everything up and she did not want to talk about it at all. And if you brought it up, she’d get angry and put it off on you. You’re doing this because you’re mean. This is not me. There’s nothing wrong with me. So we never for a long time couldn’t get her to go see someone or talk about it. And so then my dad would cover for her as well so that we wouldn’t push the subject, because the more you pushed it, the angrier she would get, and then she would say, It’s all your fault and not talk to you. So I sort of made the decision, Well, I’m not going to be that person. I’m just going to go along with things until it’s obvious that you need more help. So that happened. I would say probably around 2014-15 is when it got more apparent. I ended up getting pregnant around that time and she was excited about that but would forget that I was pregnant until I would come over and she’d be super excited that I was going to have a baby. And then after about 2015, about five years into everything, it started to become more apparent. She had a couple of episodes where she wouldn’t get out of bed and she would cry a lot. And so finally my dad’s like, okay, we need to do something. And that’s when we got to the neurologist and got the diagnosis, which I and my family knew was going to happen. But I think it was probably really hard for my dad because he knew it was too, but he just didn’t want to admit it either because to him somehow I think he felt like he had failed somehow. So it was tough for him. But once we got there, we got her on some medicines to help sort of the emotional side of things and got her a little more stable. And she had a few more years where she was pretty interactive, but a steady sort of decline. And she enjoyed, you know, family time and that brightened her all the time. And then she passed away in 2020. So we had about a ten-year journey.

Perry: Wow. Wow. Thank you so much for sharing that. So again, the same question as a Post Alice Jo. What do you find, at least from your point of view as a child? I am an adult child. Some of the challenges that you face in caring for your mom.

Cathleen: I think probably one of the hardest things was sort of that sandwich generation. I think trying to manage time gets everybody what I feel they need. And just trying to sort of find the balance between all of those things to make sure that. I could be a good mother. I could be a good daughter and still have a life on my own, which I didn’t for a while.

Perry: Yeah. I would assume that a lot is going on in terms of the caregiving aspect physically, emotionally, and mentally. You’ve invested in your loved one’s care. Let me ask you both and you know, I’ll ask you first, Cathleen, and then Alice Jo. What surprised you the most about your mom’s journey with dementia?

Cathleen: Here are a few things, I think. Initially, it was. Sort of getting the diagnosis, getting into sort of the medical system with a diagnosis and the very little guidance and information that you’re given. It’s sort of like, here’s your diagnosis, here are some medicines. We’ll see you in a couple of months and see how it goes. So I’m just trying to figure it out. What’s the next step? What should we do? When do we intervene more? When do we don’t? Just there were a lot of questions that the neurologists and the primary care doctor, in the beginning, weren’t helpful. The other thing that surprised me about dementia itself was the mood swings and the huge personality change that occurred. The person that she was, she just wasn’t anymore. And I think that was. Very surprising to me that she’s not going to just be this cute little old lady who says funny things. Right. But she, you know, became very angry with a lot of things and, you know, lashed out quite a bit. And so it was surprising and very difficult to help care for her. But, you know, that was one of the stages and then that passes as well and you get into the next stage. So I think those were probably the two most surprising things.

Perry: Right. And how about you, Alice Jo? What surprised you the most about your husband’s journey with dementia?

Alice Jo: Well, when we got the diagnosis, as I said before, we weren’t necessarily surprised, but we were encouraged because the specialists and everyone said we could have ten, 15, 20 years because it was slow to progress. So my husband and I made plans. We had bucket lists. We were going to do what we could and have as rich a life as we could together. And none of that happened because of. How quickly he declined. It was not month by month. Sometimes it was week by week, and sometimes he would be a different person one day and a different person the next day with what he was able to do. So that was a huge surprise and the specialists had no idea what to do about it because this was not normal if they would say it that way. And so they didn’t have any insights for me. The one place that I did go to was huge was the Alzheimer’s Association. They were amazing. And I got so much good advice and so many resources and good information from them. So that was the biggest surprise for me.

Perry: Oh, that’s great. I, you know, just kind of listen to Cathleen. I think many times when she’s right, you get these diagnoses, you know, you would almost hope there’s kind of a playbook of what things look like as you move forward, but you’re just kind of, you know, given a bottle of water and just go run 100 miles out there and you got to kind of figure it out. So, you know, I tip my hat off to you, Cathleen because there’s a lot of on-the-fly thinking and ad-libbing that you have to do. It sounds like no two cases are the same. But in Alice’s case, it looks like you got some support from the Alzheimer’s Association. And sometimes that helps. You know, I want to commend you both because I hope in today’s podcast, you know, the two of you can be kind of a beacon of light for others that are starting this journey and at least get some kind of understanding of what it looks like moving forward. I can imagine that both of you have dealt with a good amount of stress and anxiety in dealing with your loved ones. You know, what could you tell our audience today as caregivers that you can do? Or what did you do to kind of alleviate some of that anxiety and that stress? Alice, how did you know, what we call caregiver burnout. You want to be there and you’re constantly in the trenches, but you’re only human and you breathe oxygen and need to sleep and eat and kind of take care of yourself. So what did you do to take care of yourself and take care of some of that stress?

Alice Jo: Well, after a while I needed a little assistance in the house because I could no longer get out and be confident that my husband would be safe. So I contacted the Visiting Angels and I had somebody come in a couple of times a week for a couple of hours so I could get away from the house and get some shopping done and just take a walk if I needed to. At first, that was very difficult because I would walk out, and then I would immediately want to turn around and get right back in there again. But over time, I was pretty okay with it and I appreciated all the support that they gave. I was also very fortunate to have a whole network of people, family and friends, and a church community who would have been right there if I ever needed anything. And while I appreciated that, I think I managed to keep a decent balance of kind of self-help to relieve my stress and be there for my husband. 24 seven.

Perry: That’s awesome. That is awesome. How about you, Cathleen?

Cathleen: Well, you know, I think I battled the stress and anxiety in the beginning, probably not as good as I should have. And looking back, I think I got into some of the social media outlets to be able to see what other people were doing and see how they dealt with it, and just seeing their stories and realizing, you know what, I’m not the only one doing this and I’m not doing a bad job. And, you know, I think I had a lot of anxiety for my father. So I would create standing dates. So I would go over there, you know, twice a week, at least with my son, who made everybody feel better. And so if my dad wasn’t anxious, then I felt better. And so just creating that time to sort of carve out specifically when I was going to be there and then, you know, coming in at other times as well. But I think just realizing that. You get to a point, especially when it’s a long journey of, you know what, you have to sort of just take all of this as it comes and just understand. I’m doing my best for them. This is not going to go on forever. And so I need to give her the best life she can have. And that, I think, is what got me through quite a bit of the stress, is just knowing that I was doing the best I could for her and her intention was always to be at home, to stay home, to not have to be put anywhere. That was one of her biggest fears. So I think being able to honor that made a big difference.

Perry: That’s awesome. And I appreciate you both sharing that. I hear that often in these caregiver situations, what Alice described as the guilt of walking out the door and then feeling you have to turn back because you have to do it all and kind of letting that go. So you can know, many of these caregivers and support systems are truly vessels that help you help others. So, again, thank you for sharing that. That’s a perfect segue way because you both experienced hospice services through this journey with dementia. Could you both kind of share what that experience was like and what the hospice services provide to your mom, Cathleen, and your husband, Alice, in regard especially specifically to their dementia? And how did it help them and help you? And now I’ll go with Alice.

Alice Jo: All right. Well, being a part of the hospice organization made a huge difference. They were an outlet to answer our questions. Their support was unparalleled. 24 seven. You just pick up the phone. They will tell you what you need to hear and support you in whatever way happens. They were right. Right at the door when I needed something. They came on time and on a regular basis to the different professionals and took care of my husband. He was very comfortable with them, that they were always positive and made him feel comfortable, especially when they had to care. Help me to care for his needs because I couldn’t do it by myself. And that was huge because he was a very private person, outgoing, but private. And he appreciated it. Them being so welcoming and loving to him and the nurses. The several times that I had to call in the middle of the night, it was never a problem. It was just something that I didn’t have to worry about.

Perry: That’s awesome. How about you, Cathleen?

Cathleen: Well, I echo what you said, and you know the fact that they just were there whenever you needed them. We started with hospice right in April of 2020, so right at the beginning of the pandemic. So it was almost a relief to be able to get some help at that point and have them come into the house. And just even from the initial assessment, you know, just the feeling of, oh, you can almost breathe because, you know, someone is going to be there no matter what’s going on in the world around us at that point. And that they were still going to come into the home and they were still going to be doing the things that we needed help with. And again, just being able to call them and just laying out sort of the path that was going to be in front of us for a little while, really helped my dad tremendously to sort of see what that was going to be. And he was able to get one-on-one time with the nurses and the aides who were coming in and they were able to just chat with him a little bit because at that point my mom was pretty well bedbound and sleeping most of the time. So he, I think, got the benefit of their company and their care, maybe even more than my mother did at that point, but that’s what we needed. And so that was huge that he was able to create a relationship with some of the providers and, you know, really be there for us when we needed. We also utilized some of the available TILA counseling. So that was helpful for my family to get through some of the hard spots.

Perry: Oh, that’s awesome. That is awesome. I know in 2020 and pretty much the beginning of the pandemic, it was very difficult for caregivers, at least professional caregivers, to get out to families. So, you know, even utilizing the technology to make sure that they were still there for your mom, your dad, and yourself and the family. It’s great to hear that. You know, for both of you, your stories, both are so, so rich and so, so deep. Are there any lessons learned that you could share with our caregivers out here that are caring for a loved one with dementia? Because it sounds like you were in it from beginning to end. And, you know, any gems that you can share with our audience, Alice?

Alice Jo: Yes, I. I don’t know how much of a gem it is, but to be gentle and patient with yourself and also to be gentle and patient with your family, your children. Everyone deals with this in their way and in relationships. Change and you have to go with it as best you can. Friends are always very helpful, but sometimes they assume. For example, if you’re having lunch with someone and you’re having a good time, you know, and you’re able to relax a little bit, and they’re saying, oh, you’re handling this so well. Well, you know, you’re not the outside is one story. But what’s happening inside is total turmoil and chaos and pain. And that doesn’t go away. Just be gentle.

Perry: Great, great, the great pearl of wisdom there. Thank you so much. What about yourself, Cathleen?

Cathleen: I think, you know, Alice, she, you know, said that very well. And I do agree. You know, you have to just sort of do the best you can. You know, the adage, do the best you can with what you have and take each moment for what it is. Don’t try to look too far in the future. Don’t worry about what happened yesterday or even 5 minutes sometimes because that’s gone, you know, just to be present at the moment with your family and with your loved one. Be honest with people who ask you how you are. It’s okay to say I’m terrible and get support. So I think just really being present, being open to help, being open to trying new things, and just because you did it one way one day doesn’t mean it’s going to work the same way the next day. And just to really. Enjoy the parts that you can.

Perry: Well said, ladies. Well said. Well, you know, the takeaway that we, our audience can get from this is that caregivers are an important part of the journey with dementia. Whether it be personal caregivers such as yourselves, family members, or even professional caregivers. When the condition of dementia progresses and hospice care is even needed, it can be a valuable resource to families and their loved ones. So again, I want to thank you for sharing your powerful stories. This was truly an amazing testimony from you both, and thank you so much again for your presence today and your participation. We’d like to thank the John and Cathy Belcher Institute for their generous support of our community outreach and education programs. Thank you so much.

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