Episode 12: A Caregiver’s Perspective on Lyme Disease

Joe and Cindy Kennedy

In this special episode, Cindy Kennedy is joined by her husband, Joe, as he discusses his experience as a caregiver and spouse to someone with Lyme disease. Joe shares the darkest moments of the journey, what gave him the strength to continue – and shares his advice for other caregivers.

Joe and Cindy Kennedy were high school sweethearts and have been married for the past 34 years. They are proud parents of three grown daughters, and currently have one granddaughter. The couple used to take long walks in the woods with their two Labrador Retrievers, but due to Lyme disease, they have switched to walking the beach!

Joe felt strongly about discussing the effects of Lyme disease on the caregiver, a story that is seldom told. He shares his thoughts and ongoing experience for those who are caring for loved-ones that are chronically sick with this terrible disease.

Cindy is a family nurse practitioner who started Living With Lyme as a way to educate, advocate and collaborate about Lyme disease.

Transcript of Episode 12: A Caregiver’s Perspective on Lyme Disease

Cindy Kennedy: Hello to all my listeners out there. There is your host, Cindy Kennedy, with Living With Lyme. This episode is a very special episode. We are recording here during the holiday season and it’s during the holiday season that we think more about our family and our friends and those really close to us, and how thankful we are to have them in our lives. Today the most important person in my life is joining me. That’s my husband, Joe. Hi Joe.

Joe Kennedy: Hello. How are you?

Cindy Kennedy: And I have and been dealing, obviously, with Lyme disease and it’s been a long journey for me. It’s also been a very long journey for Joe. I think it would be helpful for those out there that are dealing with either those with Lyme disease or having themselves with Lyme disease and wondering about what happens to their spouse or their partners. I just think it’s a nice opportunity for me to really try to remember and go along with the information that Joe has to give me. I think that this will be a very, very enlightening episode. Thank you, Joe, for joining me. I know it can be difficult but let’s talk about-

Joe Kennedy: It’s a long, long road so far.

Cindy Kennedy: It has been. Can you tell me … Let’s start with the worst. What’s the worst part of this whole journey?

Joe Kennedy: I think there’s a lot of worst parts, honestly. I think the frustration over seeing you sick, not only physically sick but mentally sick, over this disease. The frustration over you not being able to get proper care. To see you change, and the people out there, most people don’t know you that are listening to this, but Cindy is a kind of carefree … She was the class clown, and there’s always a joke or a laugh, and you lost that for a long, long time.
So it was a feeling of … The frustration feeling came out of me, I’m the man, I’m supposed to take care of you, I’m supposed to take care of my family. The feeling of not being able to help you or to take your pain away or take this damn bacteria away from you was hard. It’s hard to see your loved one or a close friend or anyone suffer. And you suffered, and continue to suffer. I don’t want people to think that this is gone by any means. You are much better than where you were a long time ago, but by no means are you 100% better and we continue to try to beat this thing.
So a host of emotions, to be honest with you. Frustration and anger, angry over the damn doctors who … We’d walk out of their office and just shake our heads that that person wasn’t going to help and-

Cindy Kennedy: But remember what we would say when we went in and walked out? What would we say?

Joe Kennedy: That first meeting … And we’ve been to … Before you started getting treated, we saw a dozen doctors and every one of them, every one, the first visit, we would leave the first visit and we were like, “This is the person who’s going to help.” We would be smiling, we would be high fiving, we’re like, “This is it. He or she’s the one.” And second visit would come and we would walk about with that feeling of, “Holy crap. They’re not going to do anything for us.” And I just hated the feeling that you were basically caring for yourself medically.
People must have heard your podcast enough to know that you’re a medical professional, and you had to make decisions about your health. You’ve always said, “I need someone to take care of me.” That would eat me up inside because I wanted to be that person but I knew I couldn’t. I knew you needed medical help. We knew something was wrong. Up until your diagnosis, the fatigue, the headaches, the joint pain, not being able to even get out of bed sometimes, being help you almost to get you to the bathroom and out of the bathroom, or in showers, out of showers, it just was … And not knowing what that was was crazy, crazy frustrating.

Cindy Kennedy: It was scary. It was scary for me, too. I really didn’t know if it was ever going to end. I remember one time walking out of the bedroom in the morning and I looked at you and you said to me, “You’ve got that face again.” And I had that face, I wore it so strongly on my face. But that face couldn’t follow me all day long.

Joe Kennedy: No, because the … I’m going to use the word frustrating a lot in this.

Cindy Kennedy: It sounds like it.

Joe Kennedy: Well, because you wouldn’t use that face. And meeting other now friends of yours that also are Lyme sufferers, you don’t wear that face. Out in the public, people see you and they always would say the same thing, “You don’t look sick on the outside.” You would put on a smile and a laugh, and I know it was phony, and you would just go along your merry way. I actually was jealous of that because you would come back to here, your oasis, and you would shut the door and that smile would go. That you were trying to put on that front in front of people that, “I’m okay,” because that’s the way you are. You don’t want people to feel sorry for you, you don’t want that. But, at the end of the day, you would come home and it would go from being smiles out with friends, to come home here to be, “I can barely get to the couch.” I would be saying to myself, “Oh, my God. How can you go from being laughter to being couch ridden in a matter of minutes?” And that’s-

Cindy Kennedy: I didn’t want people to look at me … I didn’t want to look my disease, and I didn’t want people to look at me and think I was a complainer. I didn’t want to complain to you so I know had a-

Joe Kennedy: Well, you didn’t have to complain to me. I knew … We’ve known each other just way too long, for the people out there we’ve been married for 34 years and dated for seven years before that. We’ve been high school sweethearts. I know everything about you. Most people who are caring for someone who’s chronically ill know that that person is sick. I knew you were sick, I never doubted you were ever sick. There were plenty of doctors that were saying, “This is all in your head,” and I found that to be so insulting, angrily insulting, that they could say, “This is all in your head.” We found out later that they weren’t incorrect-

Cindy Kennedy: What do you mean?

Joe Kennedy: Meaning that this bacteria made its way into your brain. And some doctors will say, “Oh, it doesn’t … You can’t, it’ll never break the brain blah, blah, blah barrier,” if I’m saying it correctly-

Cindy Kennedy: Blood brain barrier.

Joe Kennedy: But they’re absolutely, positively wrong. I saw it in you. I saw you say things that were just so out of character for you. I also saw you slipping memory-wise and to see a loved one fall apart physically and mentally was scary to me.

Cindy Kennedy: Right. I developed a little signal when I had enough, when I couldn’t do whatever we were doing, even if it’s something simple as doing some errands or what not. What was my signal?

Joe Kennedy: The white flag.

Cindy Kennedy: Not that I carried a white flag, but I would pretend that I was waving a flag.

Joe Kennedy: And we knew that was enough.

Cindy Kennedy: White flag, white flag.

Joe Kennedy: That was enough. And it wasn’t … You could be home, you could be out, it didn’t matter. When I know that she gave me that signal or said, “White flag,” I know that was it. She couldn’t sometimes physically take another step.

Cindy Kennedy: It was so good for me to have a signal, instead of saying, “Oh, I’m nauseous. I’ve got a headache,” it allowed me to give you that information and not feel like I was complaining all the time. It was a period in my life that, at least for the worst part of it, looking back, I don’t know how I got through it. I was afraid. I didn’t know who to turn to, I didn’t know what to do. I felt, on many occasions, that this can’t go on. I either can’t get help, I can’t find people to take this serious, and I didn’t know enough.

Joe Kennedy: Well, it caused … Before you were being treated, that was the deepest, darkest part of our relationship we’ve ever had to deal with. Ever, ever. And other caregivers probably go through the same thing. You probably started getting treated, I think I remember, January of 2015. That November and December of 2014, that holiday season, we were at each other non-stop. Angry is probably putting it lightly. My anger was borne out of the way you spoke to me but out of everything else, of trying to help you, trying to care for you, and it was not really being able to talk about how I felt, because I saw what you were going through. I saw the pain you were in, physical and mental pain you were in, and I felt how dare I even feel or feel kind of sorry for myself when my wife is going through this? It was hard to keep that inside and hard to not say anything.
You can’t talk … My friends that I have are guy friends, we laugh about things, sports and women and everything else, and there’s no way I could pull a friend aside just tell them what I really felt inside and being able to kind of get that off my chest, the-

Cindy Kennedy: That’s not like you, either. You’re …

Joe Kennedy: Well, no, not at all. I’m Irish. And we go through-

Cindy Kennedy: What you’re saying …

Joe Kennedy: No, it was not mine. It was an Irish comedian that said, “Oh, yeah, the Irish, they keep all the emotions bottled up and jammed down inside, and then you die.” That’s just who I am and it’s tough to say that to someone about how you’re feeling. I’ll be very honest with you, our three girls were a little bit of a savior to me eventually, because they would call and obviously ask about you to see how you were doing, and they would turn and say, “And how are you, Dad?” At first, I was almost embarrassed to tell them how I was feeling, but I think eventually I felt comfortable enough to talk to my girls about how I was doing, and it really, really, really was helpful. But I really, really, really didn’t tell them everything.

Cindy Kennedy: Well, it’s hard to. You’re their dad. You’re supposed to be the strong one.

Joe Kennedy: Yeah. My girls, just to let everyone know, at that time were early- to mid-ish twenties. They were basically just about all out of college. Our youngest probably wasn’t out of college yet, but old enough so that they could listen and it helped. But what really, really, really helped me and I think this is important, and to be honest with you, I’m not embarrassed to talk about this at all, one night I was walking our dog and our next door neighbor happens to work in the mental health field, and all he had to say was, “Hi Joe. How’s it going?” And literally for about 20 or 30 minutes, I just didn’t stop talking. I think at that time it was a perfect storm for me and my life, it was you were really, really, really at the worst that you could possibly be, I had a lot of stuff going on at work, I had both of my parents going into the nursing home at the same time, so … And I walked away from him, and he probably went inside and-

Cindy Kennedy: Did he send you a bill?

Joe Kennedy: Either that or he probably just went in-

Cindy Kennedy: Holy cow.

Joe Kennedy: I walked away from that feeling actually pretty good. I knew at that very time, that very second, that I need to find someone professionally and just be able to talk. And I did. I found a gentleman who helped me tremendously. Tremendously. It wasn’t just the, hey, I’m just going to go there and unload about oh, poor me, and this is what’s going on in our life, and it wasn’t. He actually gave me a lot of tips, a lot of tools, of how to deal with our different situations, and made me realize also that this terrible illness was causing a lot of the riff in our marriage and it wasn’t you that was being this way. It was the Lyme disease.

Cindy Kennedy: A lot of this I don’t remember and I think that’s somewhat of a protective mechanism, and I know that I just would get so angry. I don’t know if that’s … You do read that with people who are suffering with Lyme as well having probably some mental status change or infection in the brain, they have rage and anger. That was difficult. It was very difficult as well because what would happen is I would do things that are ridiculous. I do remember one time opening up the three drawer file cabinet without pushing in a drawer, so that big heavy file cabinet, big wood one, fell over on top of me. I caught it before it squished me. You came running around the corner, you looked at me and you said, “Get your shit together.” Well, my shit was everywhere. It was north, south, east, west. I didn’t know what to do.
Not to say that it wasn’t hard after I started treatment, because the treatment was, at some points, worse than the illness. I would get treated, start a new protocol, and then we’d have that horrible die off. That was almost as bad as just being generally sick.

Joe Kennedy: Like every other Lyme patient out there, we have a basket full of stuff that you would take. That was my duty. I would make sure that every morning you had everything you had to take, everything was out for you, I would put it in a little cup. If you had stuff that had been taken pill-wise during the middle of the day if you were going to work that day, or even if you weren’t, I’d have the cup set up with your mid-day pills. I’d get home from work, I’d scream home from work to make sure to come home, that you were okay, to start dinner, to get your stuff ready for dinnertime. Get your pills ready for bedtime, and it was a ritual.

Cindy Kennedy: I couldn’t do it. I couldn’t do it. If we’d get something in and it would say, “Take before you eat. Take two hours after you eat. Don’t take this until you’ve taken that.” I could not, in my brain, figure that out. I couldn’t read and comprehend things and it would be so overwhelming and I know you took that on.

Joe Kennedy: I felt like the frustration of not being able to help you physically, meaning to take this away from you, that I felt like the things I can do, and one of them is the pill thing, is … That’s a way I could help you.

Cindy Kennedy: That was good. That was good. And it’s a thing that you could do. I know that you’ve given up so much for me. I know that you had to hang out with me a lot more and I know that it probably wasn’t real fun to come home to and I know that a lot of things have suffered between us because … But why do you think you hung in? Why do you think?

Joe Kennedy: Well, that’s easy.

Cindy Kennedy: Because I know, I know, I know what you’re going to say. But there are relationships that are so … Maybe they’re strained before someone gets sick and they just can’t make it, and people walk away. We’ve lost friends, it was difficult for family to understand this, because no one has had to deal with it. People don’t get this illness.

Joe Kennedy: Yeah, and that was the part that confused me. A lot of times I felt like we were alone. Nothing against our family or our friends, but it just felt to me like exactly that. Like people didn’t understand the disease so it’s, “Well, big deal. You’re tired,” or, “Geez, I just saw Cindy the other day and she looked great.” What was the line from Dr. Cameron about looking great on the outside?

Cindy Kennedy: Yeah, he said something about, yeah, when you go to a funeral or a wake and you’re looking at that poor, deceased loved one in the coffin and you look at them and then you look at their surviving loved one, you say, “Geez, doesn’t she look great?” But in your mind you know she’s dead so that was hard. And if we equate it to something real serious that everybody deals with, what is it? Cancer. Not that I ever want cancer, but you know what happens? People understand cancer. People understand treatment and what it’s doing to the body.

Joe Kennedy: Well, yeah, if someone has a broken leg, they can see the cast. Cancer is very well known type of thing and don’t get me wrong, I don’t ever wish that you had that …

Cindy Kennedy: No, I know that.

Joe Kennedy: But that’s just not … You’re right. People do know … They do understand that. They do rally. If someone has that, it’s just-

Cindy Kennedy: They got the meal train going. If they’ve got other kids they’ve got things going-

Joe Kennedy: Right. And that’s-

Cindy Kennedy: They’re all helping, they’re all supporting you, both-

Joe Kennedy: I think they would have if people knew more about it. I just feel like … I don’t begrudge them. I might have been one of those people as well. But being part of it, and being-

Cindy Kennedy: I know. We know more now.

Joe Kennedy: Oh, my … Yeah, we do. We learned it on our own, and I’m going to go back to the frustrating part. This disease, to me, is the only disease that I know of where you have to diagnose yourself. And this probably, for every other Lyme sufferer, Cindy was in a doctor’s office and basically told this one physician that she was not leaving until he treated her. I remember that like it was yesterday. He basically started to treat Cindy, and that was in that January or February or so of 2015. Cindy had enough. But to see that Cindy had to diagnose herself and actually tell that person what they should be giving her, and then if that-

Cindy Kennedy: Yeah, you had to do your own research.

Joe Kennedy: Antibiotic didn’t work, Cindy was researching other natural things. It’s crazy that people have to diagnose themselves, treat themselves. And then the ability to have to look up all of these different things online. Now thank God for some of these forums, or thank God for some of the things that we researched online. Because a lot of them pointed you in right directions and got you either names of people to see or different things to try to help.

Cindy Kennedy: But see, that was the other thing, too. You don’t know if you’re going in the right route and I didn’t really have anybody to say, “What should I do?” This sounds so daunting and so horrible, but I do want to talk about some funny things that happened during the course of this, too. Remember the one time when we were … We had sold the house, we were building house, and we had to live in a tiny, tiny apartment with two dogs and a cat. I was taking a shower and all of a sudden something happened. You want to describe that?

Joe Kennedy: Thank God I was in the bathroom at the same time. I happened to be at the sink shaving while

Cindy was in the shower. Now, this shower had a shower curtain-

Cindy Kennedy: Right. Not a door.

Joe Kennedy: Not a door. I heard her yell out-

Cindy Kennedy: Well, I went, “Whoa.”

Joe Kennedy: And she basically, through this shower curtain which I couldn’t see her though, but I could see the outline of her body coming towards me. She was basically falling backwards out of the shower but through the shower curtain. I grabbed her and caught her before she hit the ground. I was able to actually basically push her back up via her rear end-

Cindy Kennedy: I landed right back on my feet in the shower and I was like, “Wow.” We couldn’t have choreographed that any better. Yep. I would get periods of very crazy dizziness. There was vertigo associated with all of this and that would just happen. I wouldn’t know when it was going to happen. I know that there were other times where you were really afraid, you were frightened for me, because I would call you and say, “I don’t know where I am.” I remember pulling over one time at the entrance of the Mass Pike, I had taken the wrong turn, I was trying to get to Belchertown for acupuncture, and I just didn’t know where I was.

Joe Kennedy: It would scare me that … I felt like it was getting worse and worse. Like you were tumbling into the hole, downhill, and you could see it, you could feel it, and you would say to yourself, “Oh, my God. How could this honestly get any worse?” We always feel like everything always happens to us, we always say the Kennedys are Olympic when it comes to Murphy’s Law. You ever hear of Murphy’s Law? Well, to us, Murphy was a punk. He has nothing on us. Because something else would happen to you and you’re like, “I just can’t take this, I-”

Cindy Kennedy: I always thought that was the absolute worst. There couldn’t be anything worse than that. So my negativity continued to lead to more emotional distress and then I just got so depressed. I did not want to disappoint you. I didn’t want to just quit work. When we had finally found a Lyme doctor and I said to him, he was in New York, and I said to him, “I’ve lost my personality.” He was a wise guy, he just turned around and he said, “Well, I didn’t know you ever had one.” I said, “What?” He said, “Well, think about it. I’ve never known you other than being sick.”

Joe Kennedy: It’s true.

Cindy Kennedy: He encouraged me to keep working. He said, “People who have Lyme disease are great workers because they have to be strategic in what they do on a daily basis.” I’d been a Nurse Practitioner working in the same field for many years and I was able to go to work and I was able to function. When I was not sleeping hardly at all, I kept saying, “I’m not on my game, I’m not on my game.” But even during the time that had passed that and I’m able … It’s amazing, but I am able to function at work. I am tired, and now I still am tired, but I’m not to the point where I was before. I’m happy, it makes me feel good.
When you now can leave me and go on a fishing trip or a golf outing or whatnot, I’m actually … I feel good about that. In the past I didn’t. I was like, “This damn guy. He’s always gets to go places.”

Joe Kennedy: Well, I didn’t want to. I didn’t want to leave you. Meaning I’d see you in here and I’d be like, “Oh, my God, she’s … ” I’d leave you in the morning, I’d go to work, on the days you would have off, and I would get back, and to me it looked like you absolutely, positively never moved.

Cindy Kennedy: Yeah, I know. In terms of the depression, I cried. You cried. We both shed tears. Our life together and our marriage has become stronger over this, and you’ve been there for me. It’s been so difficult, I know. And I adore you, I love you, you’re my everything. You complete me.
But the depth and breadth of the depression that goes along with this, it has to leech from me to you. You have to have been depressed, but you couldn’t show that to me.

Joe Kennedy: Well, you don’t want to. You can’t show it to really anyone. That’s the … I’ve said this before, I really didn’t do a lot of research on that part because I felt like if there was some type of Lyme … For caregivers only, some type of Lyme group … I guess there’s probably a group out there for chronic illness people, for caregivers, but I really feel and for anyone to take away from this going forward, I really feel if you’re a caregiver, you really need to get a lot of the stuff off your chest. Especially someone who’s chronically ill. This is isn’t a 30 day, take Doxycycline and it’s over with. This is … We’re going on six plus years. You need to be able to talk, and if you’re me, you’re not going to talk to the person who’s sick. It wasn’t going to happen, Cindy. I wasn’t going to burden you with one more thing.
For people out there, find a good friend, find a family member, find a profession that’ll help you through that worst part of the sickness. If you’re better mentally, then you’re going to care for that person even more. Because like we had told you, before Cindy started getting treated, we were literally at the worst part of our relationship. I would never have left you. That’s not me. But trust me, I fantasized about not having you sick again. I’ll be very honest with you, I’m not sure if I told you this or not, if I heard the word Lyme one more time I’d just about had it then. I-

Cindy Kennedy: So, from who?

Joe Kennedy: From my point of view. Only from my point of view. From you saying … It was Lyme, everything was Lyme. Everything that was in our life, everything about it, it’s almost like I couldn’t get away from it. And I was angry about that. It was silly and the guy that … It helped me to be able to realize that it was normal, it was natural, but it was great to be able to tell someone that. If you take away anything from this, if you’re a caregiver, is find someone that you can just unload on and find someone-

Cindy Kennedy: Well, talk it through. I don’t know if the right word is really unload, but you really need to talk it through with someone.

Joe Kennedy: Well, that’s what I meant. To me, that’s what I was saying.

Cindy Kennedy: That’s critical. I guess, on some occasions, we probably have had some giggles about certain things, although the majority of the time wasn’t a lot of laughter.

Joe Kennedy: There was no laughter. There really wasn’t. We do now. You’re feeling better.

Cindy Kennedy: Well, we do. I’m feeling better. I’m not great, but I continue to look forward, whereas before I didn’t want to get past that minute, because it was unbearable. There was a lot of times I just didn’t know if I could go on. I was really … I was at the end of my rope because it just felt endless, and it felt dark, and it was very dark at night because I would not be able to sleep and I really didn’t know what avenue to go down. You always were there with me.

Joe Kennedy: That was one of my … The frightening thing is going to come back again, I was frightened that you were going to kill yourself. You would say it and I would talk with you, but I didn’t know at that really worst time that if I would come home and see you in a bed with an empty bottle of something next to you. That was frightening to me.

Cindy Kennedy: Well, I never had a plan, and that’s the biggest part. We know people that … By stories, not personal, but people who don’t have anybody. Those are the people who might be listening and don’t have that person. I encourage people to get into support groups. Find that network. There are support groups all around the United States. There’s support groups in Australia, and in the U.K., and in Canada. You need to hook yourself up with a support system. You need to look at your legal options. You need to remember that there is purpose in your life. The purpose in my life is to be the best wife I can to my husband Joe, and we’re going to continue to fight this fight together.

Joe Kennedy: Absolutely.

Cindy Kennedy: Yeah. We’re going to continue with our podcast and getting great guests on here. And we’re going to make a difference. Things are going to start changing. The more people that are aware of this infection, how you get it, how you prevent it, I think that’s the most important part. During this holiday season, please reach out, hug your best support system, no matter how many people that is, hug your kids, and hug that one special person that is making a big difference in your life. Thank you and I love you to the moon and back, Mr. Kennedy.

Joe Kennedy: I love you, too. Forever and a day.

Cindy Kennedy: Forever and a day. Alrighty, let’s move on. Oops, I forgot to finish.

Joe Kennedy: Oh, yeah.

Cindy Kennedy: We’ll cut this part out, too.

Joe Kennedy: You’re Cindy Kennedy, by the way.

Cindy Kennedy: Oh, I am. I am. This has been Cindy Kennedy with her husband, Joe Kennedy, and you’ve been listening to a special podcast. I’m having a hard time here.

Speaker 3: Please subscribe to the podcast …

Cindy Kennedy: Yeah, oh my God. Okay, everybody, here I am. One more time. You’ve been listening to Living With Lyme. This is Cindy Kennedy and I’ve had my special guest, hubby Joe Kennedy with me. Please subscribe to the podcast and that will allow you to stay connected because you’ll want to not miss any of our episodes. May God bless you and keep you well. Take care.

Joe Kennedy: Happy Holidays.

Cindy Kennedy: Happy Holidays, everybody.