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Carregiving isn’t always happy. I mean, you, caregiving sometimes is very sad, you know, it’s, it’s, it’s exhausting, uh, it’s life changing.

 

Caring for aging parents or other loved ones while working, raising children, and trying to live your own life? Wondering how to find the time for your personal health and happiness? Well, you’re in the right place. Welcome to the Happy Healthy caregiver podcast, the show where real family caregivers share how to be happy and healthy while caring for others. Now here’s your host, family caregiver, and certified caregiving consultants, Elizabeth Miller.

 

Hello everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole Care Network. If this is your first time listening, welcome. So glad you are here. This is a show produced biweekly to help family caregivers integrate self-care and caregiving into their lives. Each of our episodes has an accompanying show notes page where we’ve got the transcript, the video, the audio, and all of the links to the products and the resources that we’re talking about. Head over to the website happyhealthy Caregiver. com and underneath. The podcast menu, you can either click the image or the episode number for today’s show to get all of that.

 

The link will also be in whatever podcast platform you are listening to their episode description. It’s not too late to join us for this self-care at Crew later this year. Come and enjoy the respite and leave with a lifeline of resources and community. You’ve got plenty of notice to get things arranged for your care recipient and And instead of just thinking there’s no way, what if you just ask? Ask the folks around you to see if they’re willing to support you to have this time where you can connect with other caregivers and just enjoy yourself.

 

It’s a Norwegian cruise on the new ship Aqua. We’re going to some fabulous destinations. You’re going to make lots of great memories on the cruise and then you’re again, you’re going to go back feeling energized and have like this lifeline of support and community. Learn more at bit.lee. Slash HHC Self-care cruise, and I will also link to this into the show notes. By the way, we still have some sponsor opportunities available where we want to offer excursions and things to our folks that are coming on the cruise at reduced prices and do some fun, different welcome events.

 

So if this is up your alley as a business, please reach out, and I’m happy to share details. I’d like to thank our episode sponsor, Rare Patient Voice. Do you want to earn cash in exchange for your opinion? Rare patient voice or RPV helps connect researchers with patients and family caregivers for over 700 diseases and conditions. For patients and caregivers, RPV provides the opportunity to voice their opinions to improve medical products and services while earning cash rewards. Rare patient voice helping patients and caregivers share their voices. If you’re interested in this, just join the RPV panel at rarepatientvoice.com/happyhealthycagiver.

 

I read a book recently that I’m giving 4 out of 5 stars on my Goodreads, and it’s called Apples Never Fall by Leanne Moriarty. It’s basically a drama about family dynamics and the choices we make and the secrets that fester. I enjoyed the complex characters and just the overall mystery of the book. This family owns a tennis clinic, but you don’t have to be a tennis fan or even an athlete, frankly, to enjoy the story. After I finished reading the book, I followed it up by watching the TV miniseries, which was based on the book that starred Annette Bening and Sam Neill.

 

So I will link to the book and I’ll link to the show to check it out. Apples never fall. I’m kind of thinking there’s really levels of favorite things, frankly. There are favorite things that just bring us pure joy, and then there are the favorite things that make a difficult thing just a bit easier, and I’m putting this spotlighted product in the latter category. But first I need to share a backstory that I don’t think I’ve shared yet on the show yet. On the at the end of last July, while I was on vacation in Michigan, I went to the emergency room and they found what they called an unprovoked blood clot behind my knee.

 

First, I thought it was just a muscle strain, but what should have clued me in after several days is that my calf was in when I wasn’t even moving or putting pressure on it. I returned home to Atlanta and went through a plethora of tests, including a CT scan to rule out cancer. And needless to say, my medical anxiety was off the charts, um, as things were being investigated and different results and bills were coming into my my chart, thankfully there was no cancer, but I did test positive for a genetic condition called factor 23 Leiden.

 

And this genetic gene came from both sets of my parents, so the hematologist recommended that my kids and my siblings get tested for it so that they know if they’re susceptible to blood clots. I have two cousins on my maternal side with factor 270 len as well. Basically, factor 255 Lin is a blood clotting disorder that raises your risk of abnormal blood clots. It’s the most common blood clotting disorder that’s inherited or passed down within your biological families. People with factor 21112 lied. have a mutation in their coagulation factor 25 gene, essentially.

 

Your F23 gene controls the production of a protein called factor 503, which helps your blood clot when you need it, like after an injury. The factor 250 lien mutation changes this protein structure and this change causes it to resist other proteins that stop excessive clotting. And as a result, your blood may clot more easily than it should, which leads to complications. We know, of course, if these clots can go to your heart or your brain. So now that I know that I have it, I take a blood thinner to prevent me from having future clots, and I’m also super mindful not to sit for long periods of time, and I wear compression socks for flights and long car trips, frankly.

 

And I was a little depressed about wearing compression socks. I had some PTSD, frankly around it because what came to mind are the ones that my parents wore and that my brother currently wears. These beige medicinal looking ones. You know the ones I’m talking. About. Then I learned about the fun world of compression socks like the ones that I ordered from Crazy Coression. Had a lot of fun kind of picking out which ones really mirrored my personality and so I got these cute pattern socks in the mail.

 

Um, I recorded a little short video about the ones I ordered that I’ll share in the show notes. Uh, then I reached out to the company to let them know what I do to help support families and family caregivers, and I was able to get a discount code for the happy healthy caregiver community. And I have a whole page of discount codes that you can get to on my website, so I’ll link to that in the show notes, but I’ll also link in the show notes the code for Crazycompression.com, which is HHC 260 for 23% off of your order. 

 

Let’s meet today’s caregiver in the spotlight. Susan Botega is a nurse by practice who became a caregiver when her husband was diagnosed with CLL, chronic lymphocytic leukemia, over 12 years ago. Since then, Susan has adjusted her life to caring. For Bob, researching CLL treatment options and helping other CLL family caregivers through her virtual support group.

 

In this episode of the Happy Healthy Caregiver podcast, Susan and I talk about adjusting retirement plans after a diagnosis, finding those who are ready and willing to support you in this new caregiving season and living with intention to create a full and vibrant life while caring for someone with a chronic disease. Enjoy the show.

 

Hello, Susan. Welcome to the Happy Healthy Caregiver podcast. Hi, Elizabeth, how are you? Doing well. Doing well. Excited that you are here. Oh, so happy to be here. Yeah, I think this is gonna be great. I kind of we’re gonna talk about, um, kind of a different caregiving angle, um, of, of the type of caregiver that you are that really hasn’t been addressed too much on almost 200 episodes of the. Happy Healthy Caregiver podcast. So I’m excited to kind of dig into that. But first, we always start with something.

 

Uh, mindset is everything, I believe. So I created this happy, healthy caregiver jar that people can create on their own from a PDF I offer, uh, to just kind of put some positivity, some empowerment into their day. So let’s see what yours says for this episode. It says, I have been impressed with the urgency of doing. Knowing is not enough, we must apply. Being willing is not enough, we must do. And that is actually a quote from the painter and creative person, Leonardo da Vinci. Hm. So I’ve been, he says, I’ve been impressed with the urgency of doing.

 

Knowing is not enough. We must apply. Being willing is not enough. We must do. And, you know, what are your thoughts on that? Well, I would say offhand that as a caregiver, there is nothing but doing. Yeah. You’ll never be bored. No, no, that’s for sure. You’re never bored and your job just opens up day by day. It gets bigger and bigger as you go along, and the more you learn, the more you can do. And it, it’s, you know, it’s, it’s like. They always say, if you want a job done well, you find somebody who’s a very busy person, and they get it done well.

 

My dad used to say that if you want something done, give it to a busy person, because, and I was just talking to a caregiver yesterday about, you know, their treadmill of life that they were on and And you know, how they were like grocery shopping at like 6:30 in the morning time and people were teasing them for that. I’m like, listen, the caregivers are so creative and they will figure out how to how to put it all together like a jigsaw puzzle. However, it’s overwhelming. Organization becomes your, your guide.

 

You have to be organized, you and you, you don’t have to worry about it. It develops as you go along. Yeah, yeah, it’s, it’s um it’s a necessity. I think what spoke to me too about this quote, um, you know, I put this together years ago, this jar, and, and have added some refills to it since, and, uh, you know, what you, what really spoke to me, I think at the time was that, you know, worrying. It’s kind of unproductive in a lot of ways. Um, it, it is something that we can tend to do a lot of as family caregivers and yet taking some kind of an action, even if it’s, you know, prayer, or going for a walk, or, um, doing some research to release that worry, like taking some kind of an action feels Feels productive. Mhm.

 

couldn’t agree with you more. Yeah, I agree with you more. Research, I think, is, is my, you know, every person has to find their own thing. Research is mine. But I think that’s because, well, you know, I, I, I’m a nurse by by profession, so that just fell into it naturally. Makes sense. Very science oriented. So I, I just took it on and went with it as far as I could and I keep going. I don’t, don’t stop. Yeah. Well, it’s changing all the time. Oh, absolutely.

 

As we speak, moment by moment, it changes. From the beginning of our journey until this time, the, the amount of change that’s taken place is astounding, really and truly. Yeah, and the information is more accessible than it has ever been, and so all of that. Well, tell us a little bit, Susan, about your caregiving journey. OK. Um, well, let’s see. It started back in 2012. It probably started before that, but that’s when the diagnosis came along. Um, my husband was diagnosed, um, at the same time, he had woken up one day and he had a little bit of, of shortness of breath, and he was sitting at the side of the bed and I felt the back of his neck and he looked, he, he had some dampness back there and I said, yeah, it’s time to get to the emergency room.

 

Let’s go, you know, see what this is about. So we went to the emergency room and um He was diagnosed with a severe tear of his mitral valves and told that you can’t even get up out of bed. Surgery, it has to be done immediately and that, you know, we would get through that. And they said, by the way, this, you also have CLL. And I’ve been a nurse for many years and I had no idea what CLL was. I, I did oncology and I still didn’t know what CLL was, but I did have my handy little iPad.

 

And I quickly, you know, went down and looked at it and I said, oh, this isn’t good, you know, if we survive this, then, you know, we’re still not home free. If we survive the heart surgery, we’re still not home free. So, you know, what is CLL if I can pause you for a second? Chronic lymphocytic leukemia. It’s a mouthful. Chronic lymphocytic leukemia is something that a lot of CLL people don’t like to hear. They much prefer hearing the words, the the, an acronym CLL. Um, my husband will always say, I don’t have cancer.

 

I have CLL. And I find that with a lot of people in our group, a lot of them just, you know, they It’s, it’s chronic, you know, it’s something that you’re gonna live with, not necessarily something that you’re gonna die with. OK. And is that what cancer to them means is like it’s a death sentence. OK, exactly. CLL to most of them mean, OK, I’m gonna live with this thing. It’s gonna last for a while, but I can do that. And it’s, it’s an easier, I, I guess for many people, it’s just an easier thing to hear.

 

Mm. So did the CLL cause what was going on with his heart, or were they? Are they unrelated? OK. Many, many cases of CLL are diagnosed exactly by that. Something else happens and you go to the doctor for the first time and you’re healthy up until that point. Many CLO. People are healthy for a very long time. And when something else happens, they do blood work and then all of a sudden they find it out. And there you are, diagnosed. So with your background, you know, you mentioned in the medical profession and, um, and learning about CLL CLL, like what a, you know, shock that was.

 

But you diving into research, I imagine. Like, what was that journey like for you? Go researching? I had to take some of my science books out to grow and, and even as, as we go forward, more and more of the science is, is becoming very, very complicated. Um, at the time they, they didn’t have the, the, um. These microscopes that they use now, they can find out, find so many more markers that ever existed before. But at the time, just doing what, doing what was available, what they actually could find was, was very complicated.

 

And it took a while to uh to do absorb all of it. Um, I would say it was a good maybe 34 months of, of really studying before I got a really good handle on, on where we’re at. And unfortunately, my husband has a um Very complicated case of CLL. And what you should know is that CLL is a very homogeneous disease. What does that mean? It means that in each person, it manifests itself in a totally different way. There are no two people that can look at each other and say, well, if you have this, then I’m gonna have that.

 

It, it doesn’t work that way. It really and truly doesn’t. It’s, it’s so dependent on, on your biology, uh, your own personal biology, um. You know, even the luck of the drawer, I have to say it’s dependent on, you know, but no two people, you know, follow the same pathway. So it’s, this is one of the reasons why getting yourself a really good specialist is a very important thing. What kind of specialist do you typically see for this? A, a hematologist, hematologist. But we want to get a hematologist, oncologist.

 

That sees a lot of CLL people because of the nature of the disease, is seeing a couple or 603 cases a month, it doesn’t give you a clear idea of where, you know, where things are going. You get a good feeling it. The more, you know, the more cases that you see, the more you get an understanding of the disease. And that’s so important when it comes to treating the patient. Yeah, we, we certainly want patient, the patient-centered care. Husband’s name is Bob, right? Yes, yeah, how has CLL manifested for Bob and like what are some of the things as his caregiver that you have had to, to help him with?

 

Well, initially, you know, was getting him over his surgery and uh acclimating him to the fact that he had this, this, this disease, and that was difficult. Um. Unfortunately, he progressed very quickly, so treatment became absolutely necessary within a year’s time of being diagnosed, which is not a common, common thing in CLL. Many people go many, many years. In fact, many people go without ever needing treatment. They’re just monitored closely as time goes by and, and often it, it, it passes, you know, I, I won’t say it passes, but it, the time passes and they never do need treatment.

 

You just live out of normal lifestyle lifestyle, you know, sometimes they’ll go up and down with their, their blood work, you know, their um neutrophils or their WBC count will go up, up or down the lymphocytes also. Um, but a lot of monitoring of his, his levels monitoring, and that’s a very hard thing for, for a lot of people because when you hear the word cancer, you know, you wanna get that out of you fast and CLL, that’s not the way it works. You go into a period of what they call watch and worry, watch and wait.

 

Everybody has a different name for it, but that it’s exactly what it is. It’s monitoring and that is so very important because you may feel well, but it doesn’t necessarily mean that your blood is feeling well. Gotcha. OK. So, getting those blood, getting that blood work you every, whether it be every 6 months, every 3 months, whatever your doctor prescribes is so very important. Yeah, yeah, so you’ve, you’ve you’ve been through with him through all of that and Um, is the treatment like that you had mentioned, is it like typical chemotherapy, radiology, or there are other things that people are.

 

That was the thing that was very special with us. Um, we, unfortunately were right on the brink of the new novel agents coming out at the time. What is that? The novel agents are the, um, well, the first one was a BTK inhibitor, which was a brute nib. So we tried to wait as long as we could because we, it, it had become known that FCR, that’s, um, that’s heavy duty chemo. FCR was what the gold standard at the time was diagnosed, but it is very heavy duty chemo and like all heavy duty chemos, it kills good cells and it kills bad cells.

 

And then you hope that your good cells replenish themselves enough so that your bad cells will die off, but that That wasn’t the case with Bob. Um, later on we found out that he had markers that it would that in today’s world would indicate that wasn’t a, a good treatment for him, but we didn’t have a choice. That was the only treatment that was available. So he did get his FCR and he did OK for just about a year after through all that it lasted about a year and then he developed um autoimmune um hemolytic anemia along with.

 

Pure red cell aplasia, which is what that means is the uh the autoimmune hemolytic anemia. Produces blood cells that that just aren’t good enough to sustain, you know, to sustain you. It it it is basically an anemia and the pure red cell aplasia means that it kills off new blood cells that are being made. So it was like a double whammy. It, it, it came at him from both ends, so he became transfusion dependent for a couple of months before it was able to issue his doctor was able to clear that up.

 

And then he went on a ruib and that lasted for. What is that? A ruinib is a BTK inhibitor. It’s the first of the novel agents that came out. So when you say novel, is it still like an intravenous medicine or is it medication or it’s oral medication. OK, pill a day, a pill a day, pill a day, pill a day therapy. Uh, by that time they found out that these novel agents, if you will, again, oral, oral medications were working for much, much better than FCR and we’re doing less harm than FCR did.

 

Yeah, and less invasive in your life, like you don’t have to sit. For sure, for sure. Sitting in those infusion rooms for hours and hours and hours was awful, absolutely awful. But this, the, the pill, pill a day, did away with that. Um, that lasted for about, 02 or 3 years, and then he, he’s had so many multiple things. He’s had a transformation, he had his transformation, he got through that. Um, most recently, he’s developed MDS, which is, um, my myoplastic syndrolodysplastic syndrome, yeah, myelodysplastic syndrome, and that that’s another form of cancer to go along with with the um.

 

Wonderful CLL and looking back, we found out that it was the very treatment, original treatment of FCR that was a causation of this. Oh boy. So something new thinking is gonna help is actually making things. Well, like Susan, you thank goodness you have this medical background in this. What are people doing that I ask that question all the time, Elizabeth. I, what, what do people that, that, you know, don’t have this, this, you know, knowledge? What about the people that that have language difficulties? I mean, it’s, it’s crazy when I think of what, how difficult it must be for them to, to navigate this road.

 

It’s a very difficult road to navigate. Yeah. And, you know, I felt, yeah, I don’t have a medical background. I’ve, you know, studied journalism and, and did IT professionally for years. Like, but I felt like I was getting my master’s in caregiving and like learning. All of the different things. And it was, uh, in addition to adapting to this new role and this change in your life, and really the caregiver getting a diagnosis as being a caregiver because when Bob got his diagnosis, you kind of got your diagnosis too, Susan, as like, hey, he’s gonna have this chronic thing, and, oh, by the way, it’s gonna progress.

 

And tell you, the one good thing about that is it. on gradually, Elizabeth. It doesn’t, it doesn’t hit you like a bomb. You grow into it, you know, and the more you do, the more you find you can do. And, and before you know it, you know, you, you start out and, and, well, I have to do this, and this is one job and then another job is thrown on, and before you know it, you get pretty good at it. Yeah, you sound definitely like you organized person and Um, and we’re, you know, not reluctant to kind of take on the role.

 

It’s been kind of in your DNA, your whole life of being a nurture and caring for people. Um, but how was this for you emotionally? And like, did you go through any type of caregiver burnout? What did that what did that look like? Well, you know, the fear, there’s a tremendous amount of fear that goes along with it. Um, initially, you’re frightened, you know, you, you, the patient’s life isn’t just changing, but your life is changing. And, you know, it’s very different depending on, on the age of, of, you know, of the patient as well.

 

You know, young women whose husbands are diagnosed or, or men whose, whose wives are diagnosed. It’s a very different thing because they look at, uh, you know, they’re raising their kids and that becomes the most important thing, and then it becomes financial, you know, are you gonna be able to work through this, you know, what am I gonna be a widow somewhere, you know, down in the future or a widow. These are, you know, really hard questions. But as you get older and you know, so many of the CLL people are diagnosed now, I think uh 70 is the average age for diagnostic, for, for the diagnostic, not diagnostics to come about.

 

Um, but now we’re finding a lot of younger people are coming down and getting it at, at, at a much earlier age. So it’s a very different, very different role depending on, on what stage of you’re at. For me, I had a plan for my retirement, you know, I had a plan. We were gonna go all over the world, you know, now we got a, you know, Presbyterian. You know, so yeah, life, life changed a lot. And were you able to keep working or like what was your family, the rest of the family situation look like?

 

No, fortunately, I had, I had retired at that time. I had already retired. I retired very young. And Bob was retired. Bob retired at 55. So I said, I’m not leaving you home alone. I’m retiring too. Well, in, in some ways, what a, how interesting. You both retired young and did you have any years to kind of enjoy retirement with before the diagnosis? Yeah, there were a few years. There were a few years. Um, not, not too many, but a few. OK. But we still do, you know, we, we still enjoy our life.

 

I can’t, you know, I can’t honestly say that, that we don’t enjoy our lives. We still do. It’s limited in many respects, but, you know, it’s, it’s, you grow into it. You just sort of grow into it, and it’s OK. It’s good. Yeah, it’s different doesn’t necessarily mean bad. What, what are some of the things that bring you joy, Susan and and you and Bob together, joy? Oh, my grandchildren for sure. I, I, I have a, we have 1112 grandchildren. Yeah, so, yeah, yeah, yeah. So, you know, they, they bring me joy, you know, on times when, when, you know, they’re they’re.

 

You know, the, the happy caregiver is maybe a a somewhat of a misnomer because caregiving isn’t always happy. I mean, caregiving sometimes is very sad, you know, it’s, it’s, it’s exhausting, uh, it’s life changing. Um, you deal with the patient’s depression a whole lot. You know, anybody that lives with, with this kind of a disease for a long time, and especially since COVID hit us and COVID became such a limiting factor in our lives, it, it limits what what they’re able to do. And, you know, it, it’s, it’s very difficult, you know, for the patient.

 

It’s you, like that, it’s hard to live with a person who’s struggling with mental health. Yeah, you better believe it, you know, and, and there’s a tremendous amount of depression. And, you know, you have to deal with your own feelings of, of, you know, loss by your life having changed. But then you have to reach out to them and, and understand what they’re going through because they’re not only have lost, but they’re the cause of your having lost, which when you love somebody, that, you know, that it’s a very heavy burden to, to carry for the patient, I’m saying, you know, that, that you have to have your life changed as well as theirs, you know, so it, it.

 

It requires a lot of understanding, a lot of talk, a lot of honesty, and just, you really have to learn how to share things, you know, and, and share your feelings. And sometimes the patient can’t do that too easily. You have to pull it out a little bit, and it’s, it’s hard. So you become a caregiver, you become a therapist, you become a secretary, um, you become a, um a Negotiator, when you negotiate bills. I mean, it’s just no end to it, really and truly. You wear a lot of different hats and, and, and you’re also their spouse, you know, that is one of the more important things.

 

It’s very good point to bring up, really and truly. So how do you maintain that relationship, like the, the romance, the, the intimacy. You gotta give it because for the most part, these people, you know, as they progress in their disease, they’re, they’re. Sick. A lot of times they’re sick. So you have to give that, you know, you, you have to be the one to reach out. And, you know, traditionally, it’s, it’s the man who reaches for the woman. But you have to be the woman who reaches for the man in, in this case, you know?

 

And, and I, I, you know, I I don’t mean to say all women are the caregivers. There are many men who are the, but I think it’s very important for patients to understand, and you have to teach them. I always say, you know, when you want your children to grow up loving you and, and. Returning to you some of the things that you gave to them. It doesn’t happen by osmosis. You have to teach them. It’s intentional. Yes, you have to teach them. This is your responsibility.

 

And as a caregiver, sometimes you have to say to the patient, this is what I need for me to continue. This is what you need to give me. I need to be appreciated. They’re not mind readers, and, and you’re not a mind reader. Well, you know, they’re they’re consumed with their own well-being as as anybody is when they get sick. You, you become consumed with, with your own feelings. It’s, it’s very hard for you to think of somebody else’s because you’re trying so hard to work on your own. Yeah.

 

And it’s even more, um, important in some ways or crucial because this is a chronic thing. This isn’t something that’s gonna like, oh, you know, it’s a knee replacement or You’re gonna get back on your feet again. Like, we need to figure this out. Like, this needs to be a sustainable life for us. One of my favorite, you know, favorite arguments sometimes, and, and we, oh, we fight. We fight all the time because it’s my, as I’m getting older, it’s hard for me to do everything that I did 5 years ago.

 

And I have to say to to Bob, you know, you have to pick up some of this stuff, you know, you, you gotta pick up after yourself. You don’t throw the dishes in the sink. You throw the dishes in the sink and wash them, and then you dry them and you put them away. Yeah, keep doing the things you can keep doing. Exactly, meet you in the middle. I used to say that even to my mom, like, you’re gonna meet me halfway, like. Exactly. There’s so many things you’re doing.

 

And, and I know you mentioned like one of the care tips is that you’ve learned, um, how important your care team is that surrounds you, surrounds you and surrounds Bob. Frankly, like, but what is, you know, how, how do you start these good relationships where people continue to show up, you know, particularly in a chronic, in a chronic situation where it’s not a short term thing. Like, you need help for, forever, frankly. You don’t, you don’t, you don’t. You don’t, you don’t, you don’t get people to show up because people, you know, unfortunately, When things, you know, when you can no longer participate in the things that your social group participates in.

 

You’re living a different life. You you fall off the text threads and the email chain for your friends and family. It’s like, oh, or they make assumptions maybe that you can’t do some things that you or I sometimes get annoyed that you don’t, you know, sometimes get annoyed that you don’t. And you know, the thing with CLL is sometimes you don’t look sick, you know, sometimes you look perfectly healthy and then they say, well, why can’t you, you know, what’s wrong with you? And then you have to understand, you know, I can’t go on cruises.

 

I can’t go on cruises because if Bob gets sick. On a cruise. What am I gonna do? Because sometimes, if, if you, you get an infection and you’re on a ship, unless you have access to good healthcare and somebody that’s gonna give you antibiotics, what are you gonna do? So, you know, I, I, I, I limit things like that, you know, I, I, I do things if we travel, you know, I, I don’t want to be on a plane more than 3 hours because I justify in my head in 3 hours.

 

I can get back to Manhattan and I can get back to our doctor. He can, he can make that trip. He can make that trip. I won’t never let it get to the point where he can’t and be someplace else. So you have some boundaries about the things that you’re willing. So, and, and you know, and what another like a grief or a loss to have the people that, you know, you have known as, as your close, close circle of, of people to kind of, um, You know, vacate your life in some ways, like, how have you, how have you coped with that?

 

Now, first of all, you don’t have a whole lot of time, so that’s number one. Your, your time is taken up with running back and forth to doctors, uh, with, with all kinds of things. With me now, I’m managing home care because Bob gets shots and infusions and he gets um Oh my God, he gets all kinds of things. So it’s like a job. You have a job. Oh, it’s a full-time job. Sometimes I wake up in the morning with a list of telephone calls that I have to make, and, and nobody does what they’re supposed to do when they’re supposed to do it.

 

You’ve got to be on top of it all the time. So what you do is, is you make different friends, you make new friends, and that’s one of the things that I’ve done with, with the CLL Society. I, I facilitate a group with them. And I now have, um, oh well, we have over 50 members, maybe closer to 60 members. Wow, they, no, no, they don’t all come to the meetings, but they are they in person or virtual meetings we started in person and it was wonderful, but then COVID came along and and that kind of put a, a, a, you know, glitch into it because obviously CLL people are, you know.

 

More apt to have a bad case of COVID and, you know, and a high risk for immune immunity things in general. So in, in that case, can CLL Society, could anybody in the US join your? Oh yeah, yeah. OK. And when we were doing it locally, it remained a local group because you came to local meetings, but now that it’s, it’s on. The internet, I have, let’s see, I have a member from France that wants to go. I have one from, I have one from, um, Germany.

 

I have one from Colorado. I have them all over the place now. So I mean we did something similar. I’m with a, I’m a leader for a group called Daughterhood. org that that does virtual support groups and You know, we made the same change during COVID. We went virtual. And it, it’s a, a mixed blessing. I miss the in-person interaction with my small group, but we are like scaling and reaching way more people. And so that feels very, um, empowering, I think. And, and also just to connect people, um, that are community, you know, rural areas.

 

It is exciting. Yes, yes. Are there, are there some of the things like that, that come up over and over again that you, like some of, if, if they say, Oh, Susan always says, you know, for your, for your groups, like, are there just little nuggets that you’re passing on to the, the members? Oh, it’s whatever, you know, whatever they need at the time. I mean, I, I, you know, I, I take each, each case as it comes along. Um, as I said, half of the, uh, more than 3 quarters of the people, you know, they, if they don’t come to the meetings, they all have my phone number, they all have my email address.

 

So I made a whole more friends than I can handle. Yeah. Fris all over the place now. It’s one of the best thing about caregiving, I think is all the really cool people that we get to, get to meet the best and the best. Yeah. It’s, it’s, these people are, are, you know, just a, a wonderful group of people and they’re so appreciative of every little thing you can do. And it’s a venue. Where, you know, once you, you have an illness, but, and I, I think diabetics probably share this.

 

Nobody wants to talk about your, your illness. Nobody wants to hear about your doctor visits. This is, this is a very critical part of your life, right? When you’re out socializing, you’re listening to other people because nobody wants to listen to you. You know, they think it’s a downer or or they’re they’re afraid that that maybe it’s contagious, you know, whatever it is that they think. But on uh with the group, we all feel a safe place. It’s a safe place, exactly, exactly. What do you say to a member who is like that you feel is like headed down the road to caregiver burnout?

 

Like what are, what do you say to them? Take care of yourself. What does that look like? Yeah, get out and do something for yourself. Go see a show, find a friend, join a group, um, connect with one of the people in the other in our group, you know, give somebody a call and say, hey, I want to have a cup of coffee. Can we just meet someplace? You know, you’ve got to. Reach out. You, that’s, that’s the key. You can’t sit there, you know, with, with your, your depression and your loneliness.

 

You’ve got to be the person. Investors. If you just ignore it, it gets, it gets worse and more. So what do you do for, you know, you’re in this for the long haul, Susan. Like, what do you do? What do you do for just for you? Just for me? Um. Well, I, I, I spend a lot. I’m, I’m very fortunate that I have a very close family, and I spent my joy is my family really and truly my grandchildren. Um, we went to a fair the other day, you know, my daughter lives, you know, uh, she lives in Manhattan and she’ll come out, she comes out every weekend and, and we plan an outing, you know, on that, and we go and we do something, and it’s fun, you know, we go maybe to a wine bar, we do all kinds of things.

 

Yeah, and that’s that’s the biggest, the biggest thing. Um, then a lot of times I, I, I meet some my the people in the group, you know, we’ll meet for coffee or something like that. If somebody has a problem, they’ll call me up and they’ll ask what, you know, what should be done. Um, I do a lot of internet stuff. I’m always talking to somebody on the internet. Yeah. My life is very full. It really and truly is. And, and I keep it that way. And sometimes Bob says to me, Where are you going?

 

You know, what are you doing? I’m not going crazy. That’s what I’m doing. Yeah, yeah. Well, and, you know, I don’t, one of my favorite phrases with my husband is like, it’s on the calendar. Like I put it on the calendar. I’m gonna get one of those. Yeah, yeah, I remember that. Yeah. And, and you know, I feel like you come back to Bob and you’ve got something interesting to share and it’s like, you know, gives you other things to talk about. We there’s, was there a time where you felt guilty for doing these things?

 

Yeah, sure, sure. There was a time, they, I mean, there was a time when, when if we were going out to, you know, to a lunch when Bob doesn’t do restaurants, he, he tries to, we, we try to avoid restaurants, but you know, for the germs or just doesn’t like him in general? Yeah, no, it’s the exposure. It’s the exposure. He’s got, you know, he’s, his, his, his immunoglobulins are down in the cellar. They’re really big, so he has to be somewhat careful, um, you know, there was a time when I, everything would be, I’m going shopping, my.

 

I used to tell him, I’m going to Target, Bob. Yeah, retail therapy. I’ll be back. I’ll be back in an hour or two. You know, I did that for a while, but then I said, this is silly. I, why am I doing that? And I, that’s him, honestly, what I do is I bring something home for him, you know, if I go out to lunch with my daughter, I bring a meal home with him, so he’s very excited to get the meal. He’s very happy. He’s long as Bob, that’s all he asks for.

 

Food food is definitely a love love language, for sure. I know it was a big, big part of my parents when they were sick is, um, you know, making, making that part of their life very interesting for them. Um, even just going to the grocery store and buying different products and bringing them home and, and, and, um. Yeah, and even at a distance, like I used to send my mom one of those like memberships where it would be like healthy snacks and that kind of thing is the best thing that you could do.

 

That is the very best thing that can do because you’re getting something, you know, one once a month or whenever it is. It’s a Great thing to do. Yeah. Yeah, the, the membership things were, were great, great gift idea, I think, um, in general. Uh, I love that you’ve kind of, well, I love that you’ve figured out how to do this with intention. You’ve said that you have a very full life, but it didn’t happen just by you waiting. Waiting for things to happen to you. No, no, absolutely not.

 

You, you have to, you have to be the one to reach out. And sometimes, you know, it, it sometimes it’s what you can do for others. You know, sometimes it isn’t just, you know, that you, you have that little bit of time, offer it up to somebody, you know, and you’ll be surprised. Once that happens, you get it back tenfold. I can tell you that what what I get back from my group is so much more than what I give, really and truly. I mean, I, I, anytime I’m down in the dumps, I, I have a million, you know, phone calls that I can make to people and, and it’s wonderful.

 

It really is, right? That comes from giving, you know, you, you, you’ve got to give to get and that’s what life is about. So true. Well said. Well said. Well, are you ready, Susan, for the lightning round? Sure. OK, so this is a this is a journal that I wrote because journaling really helped me process a caregiving life. Uh, and I wanted other people to kind of try this on to see if it helped them feel more energized or, um, gave them peace of mind and so forth.

 

So I made some bookmarks here. Let’s no wrong answers. Let’s see here. Um, Well you kind of covered that, uh. What are some ideas you have to slow down and enjoy life more? Uh, let’s see. Computer, I guess. I sit with my computer. I shop. Yeah, online shopping. I, I, I, I do a lot of online shopping, um. Sometimes I just read on the computer, you know, sometimes I read, I read my books on the computer. Um, yeah, I think the computer, I, I’m not a big television person, you know, I have the television on company, not, but, you know, the, the computer keeps me, that that’s what I do to relax and just sit down.

 

Nice, nice. Um, what’s a life lesson that you believe needs to be taught in school? Oh dear, so many, so many aren’t taught. I mean, what life lesson is taught in school these days? I know, uh, I, I think, I think just what’s missing most in, in schools these days is kids who just Can’t just go out and have their friends. Uh, everything is so structured in their lives with, with sports and, and everything is structured. These kids don’t have a chance to just go out with their friends and just be, you know, do whatever they want to, like the street, you know, make it, you don’t need to have a.

 

Pay for a fortune for for sports, you go out with a stick back and hit a ball. This is what we did as a kid, you know, we hung out at the square. We all met in at night and the evening at the square and we sat and we talked, but today it everything is, is your telephone, you know, your, your iPhone, your your iPad or whatever. It’s interesting. Like, I think there is some, there is some, um, like peace and all of that and having more white space in your life and, and maybe, and kind of putting words in, but to say, you know, kids are really scheduled and they don’t have a lot of white space in their life, which then maybe diminishes their creativity and, um, and I think sometimes it’s OK to be bored and kind of figure out.

 

I think that this balance is a very important thing. I think you need, you know, I, I think there are pluses in, in the activities that are scheduled. There definitely there are pluses, but you also have to allow for downtime, you know, you gotta allow kids for downtime. And that’s, they’ll grow up appreciating that. They’ll learn to make their way, you know, they’ll learn to entertain themselves. They don’t have to be entertained all the time. Right. Yeah. I crave the white space now as Adult. I don’t know about you, but like, just to have a little slower morning or, um, things like that.

 

It’s OK. It’s OK to sit with a blanket and, and just do nothing. And, and maybe just watch outside, go outside and watch the sun or watch the leaves fall or anything like that. Yeah. OK. Yeah, exactly. What, what is, um, what’s a favorite daily ritual for you? Like, is there something you just kind of look forward to every day that’s part of your routine? Hmm. Every day is different. Yeah, yeah, I, I, I really don’t have any, any real ritual. I think every day is different.

 

It’s all what’s on my calendar that determines what I’m gonna do. Checking my calendar, that’s my ritual. That’s your ritual. Where am I supposed to be? When am I supposed to be there? Yeah, yeah, and then you you schedule time for yourself too, like that’s. Sometimes it’s like, OK, that’s the day. That’s the day that I get to, yeah, even if it’s just a matter of, of, you know, doing my hair or getting my hair done or whatever, you know, playing with my nails or, you know, whatever it is that I do.

 

You know, that, those are the things that I schedule for myself. And, and time with my grandchildren, I schedule with myself too. That’s important. Yeah, they’re gonna treasure that for forever. Is there anything else, Susan, that, you know, you wish that we talk about that you, any parting words of wisdom for family caregivers? I think the most important thing for caregivers is patience, patience with yourself, patience with your loved one. And just understand that, you know, I, you know, I, I, I, I, I’m a religion person.

 

I, I, I, I’m a believer and, and I, I believe every good thing I do in life somewhere in the hereafter, there’s a place for me. Yeah, you’ve got a good spot. I’m sure I’m gonna make sure I’ve prepaid my rent. Yeah, you’re making deposits. Yeah, yeah. It’s, it’s, I mean, it’s, it’s an attitude. It’s, it’s a mindset that you’ve adopted, um, that informs how you live your day. And so I really, I really respect that, that you have that. Uh, and, um, I’ve got some, how do people stay in touch with you?

 

I’ve got the CLLociety. org and the CLL Society, we’ve got, we can link on LinkedIn and on Facebook. We’ll put the links to all that in the show notes. Yeah. Amazing. They can reach me through that at any time. I love it. I love it. Well, thank you so much for being vulnerable with me and sharing your story and sharing how you’re living a life with intention. Um, I find that that is, uh, hopefully gonna really give a lot of hope to other caregivers who just maybe are dealing with a new, um, a new diagnosis with CLL or something else that they’re, that they’re grappling with and, um, and, and kind of put them on a course to say, OK, this is OK. I’m gonna, I’m gonna figure this out.

 

I, I’ll leave you with this parting parting thought to all of those who are afflicted with CLL or any other chronic disease, remember to hug your caregiver. Remember to tell your caregiver how much you appreciate them and how much you love them because you’ll get so much more back. Nice, nice. Well said, thank you so much, Susan for coming on the show. Thank you, Elizabeth, you’ve been wonderful.

 

If you’re a fan of this Happy Healthy caregiver podcast, then you’re gonna love Confessions of a Reluctant Caregiver podcast, which is also part of the whole Care Network family. Join sisters JJ and Natalie, who offer a candid, unfiltered space to confess the good, the bad, and the ugly of being. And a caregiver. From heartfelt confessions to insightful guest interviews, they’ve got it covered. You’ll laugh, cry, and everything in between. Tune into the Confessions of a Reluctant podcast on your favorite podcast platform or visit confessionsofarreluctant Caregiver.com.

 

Thanks for joining us today on the Happy Healthy caregiver podcast on the Whole Care Network. As always, show notes that accompany today’s episode can be found on my website, Happyhealthy Caregiver.com.

 

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