I recently interviewed my dear friend whose husband suffered from early-onset Alzheimer’s.
While caring for her husband, she bravely navigated several difficult issues including gun safety, wandering, loneliness, and eventually finding the right facility to care for him.
Helping family members through memory loss is incredibly difficult and can feel isolating. My hope is that sharing Lezlie’s story brings comfort and confidence to others that are either facing an Alzheimer’s diagnosis, or those caring for loved ones with this disease.
Below you will find the audio version and the written transcription of our very honest conversation about caring for a loved one battling this disease.
Please reach out to me if you need help navigating memory loss for your loved one and/or assistance finding the best care options for them.
Barb Barber: I remember when Jerry was to the point when you decided that having guns in your home might not be a great idea. Can you remember and kind of walk me through how you made these decisions and what you would recommend going forward if you could go backwards and do it any differently or do it the same?
Lezlie Rucker: I don’t know that I could. I just know the first time I knew…. he had a combination lock on a gun cabinet and he started leaving it open.
Barb Barber: Oh okay.
Lezlie Rucker: Because he couldn’t get into it. Yeah, and I knew that guns were such a big part of his life and I mean he was involved in cowboy shooting and he had so many guns.
Barb Barber: When you say so many guns, what does that mean? Did he have 10, did he have 30?
Lezlie Rucker: No, probably 30. I don’t know. He had a lot of guns like pistols and he did this cowboy action shooting stuff. It’s just his… like his sport…like golf is to somebody I mean, his was guns.
Barb Barber: Did you have a sense that it was for protection at home or was it strictly recreational?
Lezlie Rucker: No, I think they were for fun. I mean, sure it was for protection too, I mean,
Barb Barber: Did he have a gun in his nightstand?
Lezlie Rucker: No, which I’m glad. It was more recreational.
Barb Barber: So it wasn’t like security. It was something he loved.
Lezlie Rucker: Yeah – So that made it even harder.
Barb Barber: Just to take us back, how far between when you got a diagnosis and this point? Was it, just roughly, was it six months?
Barb Barber: He was retired and he was home alone a lot. Was it a year?
Lezlie Rucker: You mean that I took a gun cabinet key away?
Barb Barber: Yeah
Lezlie Rucker: You know, everything such a blur. I think it was right… it was after really shortly after the diagnosis like I thought, okay, I need to…he willingly gave up driving pretty much. I don’t know, that kind of came to a head one time too… He went over to a shoot one day over in Springfield and I was working. And when I got home, his car wasn’t there and I’m like, oh, and he was in the house and he was pacing.
Barb Barber: You came home but no car?
Lezlie Rucker: Yeah and I said, “What’s going on?”, “Oh, I blew out my tires.” And I go, “What?” Then, he goes, “yeah, my tires blew out” and some lady brought him home. He didn’t know who the lady way he was or her name. It was just past Springfield. And so, I’m like, “Well, where’s the car?” “I don’t know”. So and maybe that was my first big wake up call.
Barb Barber: So he was retired and he was home and you would go to work.
Lezlie Rucker: He had done this shoot and I thought okay. But anyway, that was my wakeup call about the guns and the whole shooting. We drove back over to Springfield and I was looking for the car… he goes, “it was on an exit ramp”, you know. So I’m looking and we finally come to it and it’s right before you get to Springfield and there it was and he just had one blown tire, kind of what he had done or what he hit but it wasn’t really drivable. So we had it towed home and the guy who fixed the tires is like, “what did he hit?” And I go,” I have no idea” because it bent it all up and everything. So then, I just said, “okay, this is it, I have to…
Barb Barber: So first the car and you were thinking, probably not a good idea to be driving.
Lezlie Rucker: Yeah, he just needs to give up this whole shooting stuff.
Lezlie Rucker: I knew it for probably a long time but…. how do you tell a man and, how do you take that away? So he goes, “well, we just need to get rid of this combination lock and have a key lock.” So I did that and then finally one day I just hid the key. I was trying to be sneaky about it but kinda not… Anyway, I finally had to fess up and told him. I said, “I don’t think you need to be… and that was so hard, so hard. He was angry, angry, angry.
Barb Barber: What were you afraid of? What were you protecting? Something he might do to himself or…
Lezlie Rucker: Oh yeah, anything. Well, he had his grandson over one day and he was showing him the gun cabinet.
Barb Barber: Okay.
Lezlie Rucker: He was showing him his guns. I’m like, “what if something happened here?” You know, what if the gun had been loaded and they didn’t even know it? I mean, something bad could have happened. I mean, I knew it was time but that’s what triggered me to say “okay, I just need to do this.”
Barb Barber: And had you thought about it before?
Lezlie Rucker: Oh yeah.
Barb Barber: And you talked to Jerry early about it.
Lezlie Rucker: Yeah.
Barb Barber: Because you had some conversations with him about how long to keep him at home and…. and a lot of the experts talk about guns, they talk about a gun trust or previously arrived at time, then we’re going to get rid of the guns when these things start happening. Did you talk to him at all before?
Lezlie Rucker: I did. I tried to but I just don’t think he’ll, you know, what if it’s, you know, but again he knows best. And so we kind of started, you know, you should never argue with anybody but I just kept saying, you know, honey I know this is hard… this is for your best interest or whatever. It didn’t matter, he wanted his guns. They were his. And my son even came over and you can’t reason with somebody who doesn’t know.
Barb Barber: That’s why it’s so important to be an advocate ya know – because they may lack insight.
Lezlie Rucker: So it was… I know it was two months that he walked around mad at me, telling me he never hated me more in his entire life.
Barb Barber: Oh my gosh.
Lezlie Rucker: I was just, I know you feel that way, honey, I accept what I have to do, I have to do what’s right and, you know, he didn’t understand it but he gradually got over it.
Barb Barber: And did you get the guns out of the house or just keep them locked?
Lezlie Rucker: We kept them locked to where he couldn’t even get to them.
Barb Barber: So you never really had to sell them or have someone come take them?
Lezlie Rucker: Eventually no, no. No, not until much later.
Barb Barber: Could he see them? Did it have a glass front?
Lezlie Rucker: No, no, it was his son’s great big cabinet.
Barb Barber: So they were locked.
Lezlie Rucker: Yeah. No, we did not do any of that in front of him – get rid of them or anything. He finally got over it.
Barb Barber: And then the driving, how did you know… you had mentioned that early before you really had a good diagnosis, you noticed differences in the driving.
Lezlie Rucker: I think just his ability or judgment like being in the right lane or that, you know, you turn a corner and he wouldn’t stay in the lane that he was in and he would go off. And really, I thought it was an eyesight thing. And he would get in a refrigerator looking for something sometimes and he goes, “where’s the ketchup?” ya know, and it’s right in front of his face but he couldn’t see it.
Barb Barber: Yeah which we sometimes do so it’s hard to know.
Lezlie Rucker: It’s funny that we should say that way because after he retired, one of his friends came and got him and they went out and had some guy time somewhere. He came home from that meeting or from that time together and he said, “well, those guys say that stuff happens to them too.”
Barb Barber: Yeah.
Lezlie Rucker: They said that because… [laughter]
Barb Barber: but I think that’s what we hear a lot is people don’t… they don’t want to worry about their own little lapses and they worry. So you hear that a lot to somebody who has a new diagnosis that their friends say “well, I lost my keys last week” right? or “I couldn’t find something I was looking for.”
Lezlie Rucker: I know they were just trying to ignore it.
Barb Barber: I think he probably encountered quite a bit of that.
Lezlie Rucker: Oh yeah. Well, who wants to say you’re losing your mind?
Barb Barber: So, you did as good a job or better than anybody I know about. You know what you were getting into, your dad had Alzheimer’s, you did some things very proactive.
Lezlie Rucker: Well, and you know what, I’m just going to say Jerry knew that too. Jerry was my rock when I was going through. Much, much more so. So his thing when this was happening, it was “I’m not like your dad yet, I’m not that bad yet.”
Barb Barber: Yeah.
Lezlie Rucker: So he pulled that card a lot with me and ya know he didn’t see it…
Barb Barber: He didn’t have good insight though…. This is important because when you’re advocating for somebody, you have to really understand they don’t see their situation correctly and that’s why they need an advocate guiding them.
Lezlie Rucker: Yeah.
Barb Barber: So you decided early, early in this journey probably not even consciously that you were going to do some very specific things. Do you remember what those things were? How did you… I remember you told me that you knew how long he could stay at home and that there were some things that if they started to happen, you would know.
Lezlie Rucker: Well, the wandering part of it, not wandering but just he was really so easy to take care of because he was content being at home. He really… he took the gun cabinet key, way worse than not driving anymore. He didn’t care about that, I could drive him anywhere he wanted to go. But I remember in the spring, it was starting to get warm weather and he said, you know, I can’t drive anymore so I’m going to start walking where I need to go. And I’m like, “oh, no”, it was actually bad. That’s actually when my wakeup call came, he took off one spring day and he was going to go somewhere and fell and got hurt and I knew it was time because it was only going to keep happening.
Barb Barber: So he wasn’t safe at home?
Lezlie Rucker: No, I don’t think so and he kept his ability to read a long time and then he was losing that, he couldn’t even concentrate on the book anymore, to be able to read. And so there was one less thing…but he would sleep late and, you know, the coffee pot would go off after a couple of hours and just different things and I knew he’d be safe until I got home from work.
Barb Barber: Yeah, yeah.
Lezlie Rucker: Or I thought he would be. And so until the day he took off.
Barb Barber: Yes, so he left and got lost?
Lezlie Rucker: I don’t really even think he got lost. He knew where he was, he said he was going to go to Pregnancy Center.
Barb Barber: Because he volunteered there?
Lezlie Rucker: Yeah, yeah, he volunteered a lot there and he was just… going to go say hi to the girls down there I guess – I don’t know so I mean, and he was even headed in the right direction but he fell and got hurt so.
Barb Barber: Who brought him home?
Lezlie Rucker: Actually, Leslie Kent, she called me at work. She was driving down the Pershing road and she called me and she said, “he’s going down Pershing road, should I go back and get him?”. I’m like, “yeah!”. So she went back and got him and took him back to the center and I left work and went to get him. And as soon as I walked in, he knew he was in trouble (laughing) he said “Did they call you? “
Barb Barber: So that was one thing that, you knew.
Lezlie Rucker: Oh yeah, that was my wakeup call to say, okay, I need to… he needs… I can’t leave him home anymore because he would just keep walking out the door.
Barb Barber: Yeah.
Lezlie Rucker: And he would because he was determined.
Barb Barber: Yeah, yeah. he was a real helper so if he thought he could get someplace he could be at the Center and be encouraging and help.
Lezlie Rucker: Yeah.
Barb Barber: So then, the nursing home journey wasn’t really straightforward for you. It was really hard to find a place that you really felt good about and to find… it wasn’t someplace in town where you ended up
Lezlie Rucker: No. Actually, I interviewed for a lot of the nursing homes around. They were unavailable… I mean, there are just wasn’t a lot out there to offer.
Barb Barber: Yeah. I think if I recall, the wandering was a deal-breaker for some of them.
Lezlie Rucker: Oh yeah. I mean, there was only I think probably one at the time that had like a locked-in room. And there was a really nice one and I think they were kind of be willing to take him if they weren’t afraid he may get out of the building.
Barb Barber: But then you went to Pana?
Lezlie Rucker: Yeah, the little nursing home on the… that I looked at. I don’t remember which one it is they were kind of affiliated with one Pana and the guy told me that, you know, Pana?! But Pana was my last round in two weeks. He had been in St. Mary’s because he had to be there. But I went down with a girlfriend, she went down with me and as soon as I walked in the door, I just felt like I knew it was the right place to be, talking with everybody and it was a 20-bed unit. They had locking doors, he couldn’t get out. So – even though it was like 40 miles away.
Barb Barber: I think a lot of people forget that we have a lot of little towns around us that have some good options.
Barb Barber: You think 40 miles is a long way until it just becomes… like the care is better than you can find and the payment sources are more flexible or they had an opening when you need one. I think opening at that radius on the travel could give you some options that you might not have close by.
Lezlie Rucker: Yeah. And really like Jerry and my dad’s journey, I mean, they just blended together because I remember my dad, my mom finally had to put him in the veteran’s home over in Quincy, two and a half hours away.
Barb Barber: Yeah, yeah.
Lezlie Rucker: And I was just beside myself from what was going on and my husband said, you know, “you don’t need to go there every day. You don’t… it’s good that you’re not going to be there. Whenever you want to be because you need to kind of separate yourself”. I guess, in a way.
Barb Barber: Yeah, you know, that gives you more quality time when you can go and you don’t feel like you have to be on duty all the time. The staff is there for a reason and they need to be able to do their work.
Barb Barber: So what would you… and just wrapping up, if you were going to have been talking to a friend that was where you were maybe right before you did the nursing home placement, what would you tell her another person that’s starting into your shoes? Looking back, do you have any advice or nuggets of wisdom for the next girl that-?
Lezlie Rucker: Just I think you know the decisions you have to make and they’re not easy. And there comes a point when you need to care of yourself. I’ll never forget the first time he was away I came home that night I got in bed and I was just like, oh, finally, you know. And then the next night was like oh my god I’m alone.
Barb Barber: First was a relief?
Lezlie Rucker: Yeah, relief. Yeah.
Barb Barber: I think that’s important to give people permission. At first it’s going to feel relief like someone’s sharing the burden.
Lezlie Rucker: Oh yeah, yeah. It’s horrible. It’s horrible.
Barb Barber: Did you realize at the time you were under so much?
Lezlie Rucker: No, no. I mean, you know, I just… no, you don’t, you don’t know what you put yourself through..
Barb Barber: And then it hits.
Lezlie Rucker: No, I mean, but still – he was in the nursing home 3 years there are times when I would drive 45 miles down there and it would be awful.
Barb Barber: What was awful? Was the care awful?
Lezlie Rucker: No, no, not that at all but, well, for a while, it took him a while to adjust and I think somebody I think the rule is don’t go back. I mean, they told my mom that when my dad went to Quincy – don’t come back for two weeks. He needs to adjust because it’s going to be horrible because the worst you can do with someone who has Alzheimer’s is take them out of their element. You think it’s hard on you it’s hard on them too. But it’s harder with Jerry. I felt like when he went in that first day I felt like I was taking my kid to kindergarten.
Barb Barber: But you really made some friends with the staff there?
Lezlie Rucker: Yeah, yeah, he had the same CNA for the whole two years which was a blessing. Again, like a confidante or whatever, a friend.
Barb Barber: That’s very unusual with the way the turnover is now.
Lezlie Rucker: Yeah.
Barb Barber: And just, you know, you were lucky.
Lezlie Rucker: Yeah, I know.
Barb Barber: If there’s any luck in this situation, that was one little blessing there. Did you feel like you were all alone?
Lezlie Rucker: Yeah,
Barb Barber: In the process? I talk to people who feel like they do all of the caregiving themselves or the other responsibility and then when they make a decision everybody second guesses them.
Lezlie Rucker: Yeah. It’s hard to be strong.
Barb Barber: And what was your-
Lezlie Rucker: Because I knew it was right.
Barb Barber: You know you’re doing the right thing.
Lezlie Rucker: Whether anybody else thought I did or not, you know, and it’s hard. I mean, it’s hard to stand alone, even, you know, a lot of Jerry’s cousins that were really close to him growing up, they were just…well, where were they? you know. Your friends just kind of scatter and you find out who your true friends really are now.
Barb Barber: It’s not that they don’t mean well, I think they just-
Lezlie Rucker: Not, they just… I don’t want to get through it. Why do they have… they don’t have to [laugh]. Everybody always says, you know, even you, Barb, said never seen anybody so whenever and it’s like…you do what you have to do.
Barb Barber: You did something that we’ll talk about again I hope, but you didn’t let people pressure you into doing things you knew weren’t right. I know there were some treatments when Jerry lost weight in the nursing home, you held firm, you were not going to unnecessarily make him have this journey be longer than it needed to be. How did you know to do that because that’s hard to face down nurses and social workers? Telling you that you can’t or you shouldn’t.
Lezlie Rucker: That’s a good one. You sit down and have a one on one with them because they’re only doing what they feel they need to do. I mean, they don’t have… their hands are tied too, you know, you got to do this, you got to do that. So, no you don’t. They were supposed to call me if they were going to take him anywhere one time then I guess they couldn’t get a hold on me maybe and he had a little bit of a seizure or something? I don’t know, he had a little something and they’ve rushed him over to that emergency room and it wasn’t… I didn’t find out until later and he was already over there and I called and I said, “what’s going on?” And I think they’d then I said, “no, you’re not going to do that. Yes, but you’re not going to do that.” It’s like some kind of… somebody just… I think it helped to be in the medical field. knowing they don’t need some of those tests.
Lezlie Rucker: I remember when he was getting pretty bad and I just said, just quit giving him that medicine that’s supposed to prolong because it’s expensive.
Barb Barber: And then, when you brought in hospice that was a deal-breaker, wasn’t it? I mean, they really came to your side and gave you some support.
Lezlie Rucker: Well, I think it’s just, I got that in medicine.
Barb Barber: Would you have done that sooner looking back?
Lezlie Rucker: No, not really.
Barb Barber: You feel like they were…came in on time?
Lezlie Rucker: Yeah I think so.
Lezlie Rucker: Yeah, they came in on time, it was only two weeks but it was just better medicine and just more than one eye looking at him.
Barb Barber: So being tough on behalf of the person that you’re taking care of seems to give you a lot of strength when I look back, you were pretty resilient in looking out for Jerry’s best interest in the big picture.
Lezlie Rucker: Yeah, and I mean bottom line where were these other people? [laughter]
Barb Barber: Yeah, I love that. That’s a great way to… I think that’s a great way to give yourself strength.
Lezlie Rucker: Yeah.
Barb Barber: It’s kind of like “where were all the naysayers?”
Lezlie Rucker: And, you know, I hold no bitterness because, you know, people are people and unless you’re living a situation, you don’t really know what’s going on.
Barb Barber: Yeah, yeah. Well, that helps me very much. I’ve been wanting to get your story for a long time so I appreciate that. Thank you.
Lezlie Rucker: You’re welcome.
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