Dee Ransom joins Steve and Virginia to discuss some of the adjustments she has had to make being a caregiver for her husband, John, who lives with Alzheimer’s disease. Dee shares her experience learning to advocate for her husband, adapting to changes in their relationship and the difficulty and hidden blessings involved in placing him in a residential facility.
Learning to adjust with -dee-ransom
From the University of California, Irvine, this is UCI MIND, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Welcome, everyone, to today's spotlight on care episode, we're excited to have Dee Ransom here. Dee has her own personal experiences, we really talk about them as adjustments that she made that she had to learn to make in terms of being the best caregiver she possibly could for her husband. So to begin with, we'll start off with a little story of our own about what it's like making those kinds of adjustments.
I think since you're going to be talking about being a caregiver to your husband, my situation was a little different in that it was my mom. But I think I can say my difficult adjustment was acting. I mean, really, and truly, I wasn't her daughter anymore. I was her parent. And that I think was the most difficult thing for me, she she was my go to, we were best friends, I went to her for advice on everything. As a daughter to a mother, and here I was trying to act like the daughter, but really, I was making decisions about her as if I were her parent. And I found that difficult.
Yeah, adjustments. I feel like I've been making adjustments my whole life. But in this case, they were pretty significant. And the biggest one for me was patience. I had never been a very patient person in my life and, and had a bit of a temper being an Irishman, of course, but I had to learn how to adapt and how to be patient and how to, you know, repeat answers over and over again and other types of patience that were required. I'll never forget a couple of close friends saying to me, soon after Patti was diagnosed, and I was becoming the primary caregivers. They said, Oh, you've changed so much, Steve. And I go, No, I didn't. I haven't changed. I'm still Steve. And they said no, you're much more patient than you ever have been. So it's for the best sometimes. Anyway, here's Dee and we'll start off with a little background on her and have her tell us a little bit about her background personally, and how she became a caregiver for her husband.
Great. Thank you so much. Well, I've been married to John for over 50 years now. And we met at UC Davis. And
Woah we only accept anteaters.
Well, I'm a partner right partner campus, right. Anyway, we met at UC Davis. And after we were married, we both went on to have successful careers and what have you and John's career in federal law enforcement, actually, you know, not I wouldn't say forced him to be healthy and active and everything but you know, it required it. And so he was a very healthy person for a long time. And, you know, he had run Marine Corps marathons, etc, and things like that. But nevertheless, he struggled with clinical depression for years and years and years and wound up with ECT In 1984
good question. It's, um, select it's electric shock therapy for the brain to relieve a major clinical depression for one. Okay. So he it helped for about 17 years. We moved around all over the United States with his career, we finally were able to settle in Virginia and later here in Southern California with our two boys and raise them. But I had to retire early, myself in 2003 Primarily because John was developing health problems. Specifically, he was diagnosed with um mild cognitive impairment. And he was calling me at work a lot. And he had been retired by then. And it was getting concerning. So I did retire early. His formal diagnosis with Alzheimer's, though, came in 2017. Through his neurologist, but he was having a conversation with a psychologist, actually, at the time who could not follow his conversation. And John could not follow hers. And so she mentioned she goes, you know, there's help for this. And she did suggest that John see his neurologist who had been treating him for some other things like, I don't know, neuropathy and a few other things. She did see him she did diagnose him as having Alzheimer's, that was in 2017. So that's where we are in terms of then now it's quite different.
One of the things that you mentioned that caught our, our thinking was you used the word that you had to become an advocate, not just a caregiver. And I think that's really true, but we're really interested to hear how you would talk about it.
We all do loving things for our husbands and our wives. And we wouldn't consider them
Or our parents
or Yeah, and their parents, anyone that we're caring that we care about period. But I actually had to become more of an advocate seriously. In other words, like, I was happy to do this for my best friend, by the way, but at the time, I didn't even consider it an advocacy. But I had to arrange all of a sudden, all the doctor's appointments, I had to attend all the doctor's appointments, I had to drive John everywhere, because John's neurologist reported his diagnosis to the DMV. And that was really hard for John. And of course, it became hard for me, and I don't mean, the driving part, I'll tell you about that. It's really hard for John, because he's basically a car guy. And losing that independence was really hard. For me as a advocate, though, it meant that I had to attend everywhere with him, you know, and I always did remind John, that honestly did not bother me to do that. I mean, I was happy to be able to assist him. What was tricky as an advocate, though, was listening for four years to the fact that, well, I've never had any accidents. And I've never had, you know, a driver what do you call it a ticket or anything like that. So I had to hear that in cyclical form. So. But other things that I remember having to accompany him to every event that typically he is a guy would go to by himself or with his dear friends. And that was mostly for what it was mostly for safety. John came to a place where he could not be left alone at all. I'm not kidding, just to say, for example, to the men's room in the theater, he could get lost. And the dilemma was, the reason I needed to go with him to every event was that his two very best friends really didn't want to admit or understand that John had Alzheimer's. And you know, his body looked really still good and everything. And so while he can go in the bathroom by himself, right, no, even walking around the block in the neighborhood. So those were types of things that at the beginning, I had to do that. Still being his advocate, and it's something we have to pay attention to for safety.
You mentioned a couple of friends that he had, that were either slow to accepting his disease or never accepting his disease. How difficult was that for you? If they were such good friends?
That was really hard at first, you know, because I have been educating all of our family and acquaintances and dear friends all along, because very soon after the diagnosis, resourceful people from you know, local, Alzheimer's and National Alzheimer's organizations told us don't hold this in, educate people. So we did, I had people over and we talked about it and everything. And John did too, by the way. But when there's two best friends did not want to accept it, or believe it or this or that, that was really hard. It still is, it still is because they still don't want to accept that, even though they see the progression.
I don't think people know what to say or that do you feel like whatever they say, could be the wrong thing. Yes, they just don't know.
Yeah. But you know, I mean, we do have plenty of friends who have accepted our education, if you will, you know, plenty. And, and I don't hold it. By the way, I did not hold it against those two good friends, because they still lovingly visit him and what have you. It's just that. I think they want to see him better. Well, I don't know. I don't really know.
Yeah, I had that challenge with some friends who just couldn't go anymore. They couldn't see their lovely friend, Patti, in that position, even though before they were thick as thieves.
Steve, I'm very fortunate that they do still visit, John, but they do engage. So I guess I have kids say they are learning learning. What do you think, you know,
you talked about not overdoing it with John and I found that kind of interesting. What did you mean by not overdoing it?
Well, what happened is this. John, typically with his friends that I just mentioned, would have evenings where they would have dinner and maybe watch a movie and what have you and have long fun together during the day. But what happened is it started to be where if John had more than like two hours of engagement, he would actually literally fall asleep in front of them or worse than falling asleep. His cognitive level declined quickly. And so both John and my friends were glad when I would sometimes say, you know, I think we're all a little tired here. And I did find that once he rested his brain, he kind of like recovered. This is a while back, okay. But over tiring John, that was not a good move at all. Not a good move at all. Because later on he would have something the night would be difficult
difficult in the sense that, for example, maybe family had visited if we had allowed it to go on. As long as he was comfortable if you will. Later on he would have like delusions when when the people left like why are three women still in our house, he would think I'm an imposter. He that was very hard. That was very hard. So I learned that it was just as hard for me if John got too tired as it was for him
That's, that's really good advice. You know, you're trying to do as much as you can, or help your loved one do as much as they can. And yet, you need to have kind of like a restrictor belt on that thing a little bit in terms of how you're going to manage that for for both his sake, and yours. Now, that's good advice. You mentioned getting ahead of sundowning. We haven't really done a lot on sundowning. Could you explain what you experienced with sundowning? And how you got ahead of it?
Sure. Well, for our case, sundowning for John meant, as the day progressed, and especially toward dinnertime, not particularly when it was getting dark, but toward dinnertime, I believe his brain got tired, frankly, I don't know, he had been using so much energy to think and engage and converse and, and figure things out during the day. So toward dinnertime, he lost a bit of that, and would get a little flare ups and things like that. We call them flare ups, he would get angry quickly. And this was not typical of John. And so by the term, we termed it together, we call because like, you know, I mean, he knew it wasn't typical. And I did too. And the reason we call it flare ups is because as soon as he'd get upset about something, it would pass quickly. And he might not even remember it. And then that was a little tricky, because of course, I did. And so so what I did to help with the sundowning, and I had some advice about this was to leave more lights on, things like that, keep the evening calm, things like that. Because otherwise the rest of the evening was not pleasant for him. And I was trying to solve things and I don't need to be solving every single thing that comes up, I found out.
So sundowning is a sense of what you have a sense that night, the day is over and I'm ready to go to bed. What is sundowning?
I did not experience it like that at all with John sundowning. I mean, that would have been a comfortable way. sundowning for John was like, getting irritated about things that did not irritate before and losing some sense, in my opinion of watching him like some sort of cognition like why, again, why are these three ladies in here? Who are you? Occasionally he would have me bring out documents like but this other lady has the same documents? I don't think that you're my wife, this kind of thing. So that was hard. So this
Did he pace? He paced back and forth?
he didn't, he got lost more he got in our own home, he would get lost. yes. And he would admit it, he would say Honey, I don't know where this is or that is, but he didn't pace. I have heard of people that pace. But he had an anxiety that was right under the surface.
You know, you started to mention something. Sounds like John knew he had the disease accepted he had the disease. Did that make it easier for you? Do you think then, of course you haven't experienced any other situations. But we've talked to people who dealt with people who never accepted the fact that they had some memory problems. And that made it even harder. How do you feel about that?
Well, you know, the the fact that you mentioned it reminds me definitely from the very beginning from the early diagnosis. John went to classes with me through the Alzheimer's Association's and things like that. He went to a day center. He brought it up that he thought that would be beneficial. Although I had already researched it, of course, you know, but he brought it up. Yes, for I'd say for a good three years John actually knew and of course it was frustrating to him. He did know that he had Alzheimer's. It wasn't a pleasing thing naturally, of course, but he fought it by going to the day center three days a week and then we did have help in the home finally, so that I could go out and do something so that I was a better advocate and care partner, you know,
this might be a tough one. Feeling alone.
Yeah. One gets used to it what happened was, because John toward, I'm talking about the last four years, okay, so toward, let's say date a year three and four, John couldn't follow my conversation and I couldn't follow his. So this guy who has always had such great Engaging Ideas, he became less and less conversational. And that made me feel a little lonely in my own home. I think he was a little bit aware of it. And he tried, you know, to, but what would happen is he would begin a conversation, and I'm listening, but I couldn't figure out which conversation he was in. You know, like, where did this start? And where are we going? So I would just go literally, with wherever he was going at one point, because it was that was hard. Yeah, I did feel lonely because I missed his engaging idea. So you had some really good ideas.
What did you do about it?
Well, I didn't. I don't know if this is the right thing to do. But I didn't usually wind up. Eventually, I should say, bring up things I didn't, I stopped commenting too much, you know, because I didn't want to frustrate him. And I knew it wasn't going to lead to any meaningful conversation. But what I did, Steve, this is a good question is I did, I think I just mentioned that I had some care partners in the home eventually, so that I could go out and have conversations with friends and such. I'd go to lunch with a girlfriend or I get my hair done, or my nails done. It just made me feel better. So when I came home, I was really glad. Also, when he went to the day center, I was really glad when I went to pick him up. Because I did I do think that engaging situations like for example, outside in the day center, I think that he found it maybe more engaging, or he had to try more, I don't know. But when he came home, when I picked him up, I was happy to see him and he had talked with people.
So the day center actually worked for both of you.
Yeah. Very well. For a while for a while. Yeah.
Maybe this is what you were talking about before. But you spoke about learning to accept the lack of active participation. Is that what you're talking about in terms of you're talking to John, and he's just not following your train of thought? Or is it something else,
it is something else. Conversation is one thing, engagement in discussion is one thing. But actually, later in John's diagnosis, he became well, he lacked initiative. For example, before he was a car guy, he could no longer or did no longer want to do anything of that which interested him before. Even during the pandemic, for example, we got him started on puzzles, he used to like that. No, painting No. And nothing but sitting in his chair, there was no initiation. And I would bring ideas to him. And even then, and now, even though I bring them this very rare that he will go ahead and join.
Okay, so we kind of talked a little bit about that, actually, Virginia referenced this, she never felt like she was any longer. She was the parent and her mom was the was the daughter. But maybe you would expand upon the whole idea of being a spouse, and I'm going to ask you a really difficult question. And you can say no, if you don't, but you never, you no longer felt like a spouse. What what did that entail?
Well, that was the hardest thing is still is actually, John considers me or for some reason, thinks I'm his sister, his sister. And he had a very difficult early life with four stepmothers, John's birth mother left when he was about 18 months old, and she right after the birth of the sister, and therefore, I guess maybe the older memories come back, I don't know. Fortunately, because I'm nice. He has a better relationship in his mind now with his sister than they ever did as an adult. So I love that I've contributed to that, although his sister is in a facility in San Francisco, and she's far more affected by Alzheimer's than John. But anyway, so I answered to whomever he calls now and I just say, Honey, I'm right here. What can I do for you? Or how can I help? It really hurt the first 20 or so times? I don't know the number but I was just like when he thought I was an impostor, or called me someone else. Even though I knew I had heard from my support groups. I'd heard about this. But I mean, I've been married to this wonderful guy for 50 years. And I just thought, not only deserve to have him know who it was. I just loved it when he did you know, recently, when my boys were standing near me, he said, Now you know your mother blah, blah, blah. So this was really kind of great. He didn't call me Dee but it Just something that flashed in and I liked it. So they are my ID cards now. But yes, John and I were fortunate, blessed, however you want to put it to know, we had married our best friend. And therefore, for the first many, many times, I kind of couldn't believe that he actually did not know me. This was something I couldn't accept for a while. So I tried to, like, help him and prove it, you know, I had the same bracelet as he had the same ring that he picked out and things like that, our wedding books, everything, but it's okay. Because you know, it's really not about me. It's really not about me.
So I hope a lot of people hear you say that. It's really important to know that it's, it's really not, no, he’s really not doing anything to hurt you
Oh, no, no, no. And I gathered that finally, yes, yes. And therefore, for example, Steve, when I would put my hand on his hand or shoulder or want to hug him or something, because I'm his sister. He doesn't want that. And it's an imposition. So I want to do what's best for John, even though that's very hard for me. And so I don't go there.
That was the question I was gonna ask you. I've never asked anybody. But I think you might be up for how was the change in terms of your relationship the touching the hugging the loss of that for you
very hard, very hard. I love John so much. And I get to see him a lot now. But still, it's I just said, it's not about me. And so I can, I can adjust. We're talking about adjustments. I can adjust. John cannot adjust. Once, when he needed help, this is going to be a little private. But in the shower, he needed some help. And I went in, and because I'm his sister, he was very upset. Even yelled, get out of here, you know, because I mean his sister. No, he was like, Get out of here. And of course, that hurt. But you know what, if you've put it in the framework of what they're experiencing, I know that I can handle it. I feel equipped to handle this. I mentioned to you that earlier. In his lifetime, John had eight sessions of ECT electric shock therapy. That was pretty hard. You know, you go through life and you keep thinking like right now I'm thinking this is the hardest thing I've ever done. It's the hardest thing I've ever done, because it's now but that was pretty darn hard. Okay. That was hard for me to watch your husband eight times have to have this. Okay. So I'm saying I'm equipped, thank God, I am equipped. And I know, I know, I'm gonna be equipped, you know, I'm gonna do it. And I'm, I'm, I'm just going with it.
You know, I think that's really important. I'll never forget my close friend, Michael Todd. Whenever I would be, I would get really down, he would start talking about all the things that I had done, and how I had become different and better. And pump me up if you would, about, hey, you know, you've done a lot and you're doing a lot. And I think sometimes we forget, as caregivers, it's easy to kind of just be in the moment, which is good. But forget what you've been through and what you've accomplished to get there.
Well, you know, my life group members do my very best friend prayer partner for about 12 years, I think, no, they remind me and yeah, I know I'm equipped. I'm going to I'm going to be there.
John is in a community right now.
He is he was placed in July, due to a wandering event at four o'clock in the morning, which had never happened before. And although I had been warned, and I had the door alarmed and locked doubly, whatever was in his mind, enabled him to open the door and the alarm awakened me. A police drone found him he had been injured, he broke his nose and scraped up a whole lot of things. It could have been far worse. He could have since he didn't know what our house was. He could have gone to someone's house and knocked on the door or not. So even that it feels a little providential. So I had been looking for a place to place John either in September or December. And my best friend and I had gone to visit places. And I had asked God, I said, You know what, I know I need to play some he had had an one much more dangerous thing before he had opened the car door on the freeway. Therefore, I was looking but the hospital when he was taken over there, they said he really shouldn't come home. And so I providentially found this place and yes, he's in a place a very safe place.
How challenging is that for you to visit him there?
Oh, I'm visiting him there is not challenging. Having him not at home is very challenging. It has presented a profound sadness for me occasionally, especially around the times when I typically would give him medications and things like that. They're extremely good relationship with this place from caregivers to residents. And it comforts me that three or four people are doing what I was doing. He's very safe. I know, I would not be equipped for talking about it equipped at home to do it right now.
My husband got out at four o'clock in the morning in a place that I had already secured. And he got hurt. And I'm trying to unsee that sight. So, so, yeah, I, I'm very fortunate in that regard. I found a good safe place. I had a placement specialist helped me that day, I had just the day before been visiting a place. But this placement specialist actually knew bids that were open. Therefore, I found this place.
How far did he get down the street before he fell?
I don't know how far he got before he fell. I know that when the alarm got on, I raced out and the police I called the police, of course. And they came and were helping me look like Do you have a pool? Is he at the neighbor's house, etc. But meanwhile, a police drone found him and brought they brought him home
Well, you talked a little bit about safety. And maybe you've covered that, but it sounds like that's been a focus of your relationship with John from the very beginning. How can I keep him safe? And even the decision to place him in a community was based on safety
Oh, yes. Yeah. Well, you know, I love the guy. I'm gonna keep him and yeah, definitely, yeah. I'm trusting the experts knowledge, actually. We have a lot of expertise here in Orange County, you know, and so I'm trusting them.
Okay, Dee one last question. How are you doing?
Thank you for asking. That's a hard one. Yeah, I'm, I'm actually doing better now. After it's what is it been since July, it's about three months. I do have a lot of support. Like I mentioned, I have what I call a life group. It's a small group from our church, they helped me so much. I'm actually sleeping much better. Steve, I was very vigilant when John was home, sleeping better, I'm actually eating better. Because I used to treat him to some treats. He's actually eating better, because they feed him such healthy things. So he has a strong constitution, he does have a few concomitant things like the congestive heart failure and the kidney stage for disease, which could compromise his health. But as far as I go, I'm a very healthy person. I'm trying to do what I've been told with just take care of myself, get out and do things and don't stay as like, I feel like I don't want to see people because I'll probably be crying once in a while or something like that. So I just do it. My best friend said, when somebody invites you to do it, you just say yes.
Well, we don't have to end there. But is there any other piece of advice you would offer that you think is like aha, that other caregivers who are listening to this would would love to hear?
Perhaps what I did early on, I wrote some affirmations for myself. They really helped me. When I look back over them. They encouraged me, they're my thoughts. They're not anything special. They're just like, Okay, you're equipped for this, just kind of like you mentioned, you've done this, you've done that you've done this, you've learned that. So if they could write their own affirmations, they don't have to be a lot. And then read over them sometimes.
Did you pin them up on the refrigerator?
No, I haven’t read your I have them in a booklet and I've shared them, by the way with a lot of people and they have blessed them they have
Would you mind sharing them now?
Well, of course, I can read some I mean, sure. They're very encouraging to me. They have to do with the fact that I am equipped. Oh, here's one. The first one says I am equipped in many ways for this precious journey through many life experiences I've had, when I feel ill equipped, let me be reminded that I can exercise my specific gifts and strengths in these new areas of life challenges. I may even develop new strengths and areas of resilience, which will be instrumental in my eventual success in caregiving. I said that because I formally had been pretty successful in my life challenges just in general my career raising the kids and all that, and this one met me full on And I didn't feel that successful at first, you know, just another ones. Let me recognize for those times that I am successful in helping my loved one feel calm and content, even when he can't understand what's happening, actual or imagined. It feels very good to help my loved one. I said that because it's not just specific to my husband. I hope it'll encourage someone else to be content with whatever situation he's dealing with. Even if it can feel hurtful to me at the time, I can adapt to the situation. Most times situations change with Alzheimer's. What seems a really difficult situation at one time may disappear pretty soon.
That's a good place to end.
All right. Yeah. So if they do their own, it would be encouraging.
Yeah. That's good.
Wonderful. Thank you so much for joining us today.
Of course, thank you.
Well, it's obvious to me that you're amazing.
She's got a handle on this.
Yeah. You know, we've all been on this journey and you find and see people who are not handling it. And that's okay. It's, it's not, it's not easy. You're doing a great job, Dee. You are doing a great job. Really, you know, it's great to have you and have you tell your story, and especially since it's real, you're right there right now. Thanks so much.
Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders UCI MIND, interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu