In a span of five years, Nebraska native Valerie Bourdain lost her daughter to adrenal cancer, her mother to lung cancer and her father to Chronic Lymphomatic Leukemia (CLL).  Midway through their daughter’s cancer journey, Valerie’s husband left the marriage.  Valerie forged ahead.  But as the sole caregiver for all three family members, her weight and blood pressure soared to dangerously high levels.  Finally, she was motivated to get healthy so her grown son wouldn’t have to care for her later in life.  As Valerie slowly rebuilt her life, and her body with the help of a fitness and nutrition coach, she also began working on a memoir titled, “Put Up Your Umbrella: Finding Shelter in the Storm of Cancer.”  Tune in for an incredible story of resilience, reinvention and learnings along the way.  Note: this episode first aired August 18, 2016.  We have an update at the end of the show.

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Buy Valerie’s book: Put Up Your Umbrella: Finding Shelter in the Storm of Cancer
Explore: Valerie’s Website
Find Valerie on Facebook
Learn: What Is Adrenal Cancer?

Valerie Bourdain gets fit

Valerie and her fitness coach, Trevor Fleming

Music:
“Always Late” by Ketsa | CC BY NC ND | Free Music Archive
“I can see daylight again” by Dlay | CC BY NC ND | Free Music Archive

INTERVIEW TRANSCRIPT:

[INTRO/TEASER]

JANA – The stress of caring for a loved one often leads to anxiety, depression and physical health problems. And that’s just when you’re responsible for the well-being of one person. Imagine caring for three seriously ill family members over the course of a decade, one of them being your daughter, and having to let go as each one dies. That’s what happened to Valerie Bourdain, who joins us today from Omaha, Nebraska. Valerie’s come a long way from the toll of caring for members of her family to now finally caring for herself. She’s a writer, a speaker, and as she says on her website, a clever girl. And she’s here to share her story of survival and recovery. And boy has she recovered. Valerie Bourdain, welcome to the show.

VALERIE – Thank you so much for having me.

JANA – So I know that you’re a native Nebraskan. Just to put this in context, can you tell us a little bit about your family background and growing up?

VALERIE – Absolutely. I had not a completely normal upbringing, in that chronic illness struck my family when I was eight years old, and my mom had a major aneurysm and almost passed away. So my responsibility for caregiving really began at the age of eight. I’ve lived in Nebraska most of my life with the exception of a couple of years that I lived in New Orleans, when my dad was relocated, but all roads lead back to Nebraska in our family. And we ended up heading back here. And then I went to college at Tulane University. But otherwise, I’m very much a Nebraska girl. We literally lived in a white house with a white picket fence. And my dad was an architect by profession and had his own business. So very Cleaver-like family, with the exception of again, illness hit our family early.

JANA – Yeah. And you have siblings, you’re a middle child, as I understand it, is that right?

VALERIE – Right.  I’m a middle child, I jokingly say, which is not the favorite and not the baby. But I have a sister 15 months older and another sister that’s seven years younger.

JANA – So you’re the middle of three girls.

VALERIE – I am.

JANA – So you were married. You have two kids, you’re now divorced, I know that your son is still living. And tell us about Megan, whom you lost to cancer, specifically adrenal cortical cancer.

VALERIE – Yeah, she had sort of had a lifetime of menacing little health problems. They never snowballed all at once. But like for one thing, she wet the bad up until about the age of 12. And I would take her to the doctor over and over, they would test her for – generally for diabetes, everything would come back fine. She had abnormal hair growth issues. She was a very fair girl. But as she got to her college years, she was running five miles a day and her weight was a huge struggle. And we were together all the time. I knew what she was eating. And I knew the math of it. And I was very concerned, not so much about what her weight was but about how little she was eating and not losing weight

VALERIE – And so we sort of started going to doctors, but everything came back – she was diagnosed with polycystic ovarian syndrome, which didn’t really set well with me.  Something still seemed wrong. And then the day of her college graduation, as she got on her cap and gown she looked at me and said, I’m sick mom. And I just said, We will keep going to doctors until we find a solution. And making a long story short, within less than 30 days she had a bladder infection, went in, the doctor had the foresight to do a CT scan and it came back with a fairly large sized tumor on her left adrenal gland. So that’s sort of where this story began. They’ve made a lot of progress with adrenal cancer. But adrenal cancer a decade ago, was definitely deadly within five years.

JANA – Uh-huh.  And it’s fairly rare in young people, isn’t it?

VALERIE – Even though it’s on the rise with 20-something year old women, it is a one-in-a-million cancer.  And most doctors will not even see adrenal cancer in the lifetime of their practice.

JANA – Wow.  And the adrenal glands are above the kidney, just for folks who don’t know anything about adrenal cortical cancer.  Maybe you can, if you want to add anything to that, what are some of the symptoms and what sort of treatments did she get?

VALERIE – Yeah, I will. I will, absolutely. So I tell people, your adrenals sit on each one of your kidneys like a little stocking cap. It’s just a little gland. But that gland is the chemistry lab of your whole body. So it does control your weight, it controls your blood pressure, it controls hair growth.  It also affected – that’s probably Megan wet the bed for so long [because] her adrenals were off. They sort of were anticipating that maybe – and when she was five, she had a very small tumor on her gland that slowly grew, and by college it advanced to adrenal cancer.

VALERIE – So that’s, I mean, of course, the, you know, the could woulda shouldas – the sad news about it.  But they don’t necessarily CT scan a five-year-old, looking for a one in a million cancer.  So generally, the number one treatment for adrenal cancer is removal. And once they discovered the tumor on Megan, and they removed it, we had about a four-month period where she had to go on artificial cortisone, because her body was excess producing so much cortisol. But once she weaned back off of that she actually went into an absolutely glorious year of remission, and looked the most beautiful of her whole life.  But adrenal cancer is somewhat like pancreatic, once it’s loose, and since your adrenals are right by your renal artery in your kidney, it’s sort of everywhere. And when it came back, it came back with a vengeance and metastasized with tumors on her spine. So she was in really unmanageable pain for a couple of years before she passed away.

JANA – And she was how old when she passed away?

VALERIE – She was 27 when she passed.

JANA – Gosh, I’m just – I’m so sorry.

VALERIE – Thank you.

JANA – Valerie, I know that umbrellas have played a big role in your life. And I read on your website that when Megan was discouraged, you’d tell her to put up your umbrella. Can you tell us about the significance of umbrellas in your life?

VALERIE – Yeah, since I went to college in New Orleans, where it’s always on the verge of rain, I had had a boyfriend give me this really beautiful umbrella as a gift. And I majored in art. And when I was in between classes, even if it wasn’t raining, I would take my umbrella with me, because in New Orleans, like the sky can unleash with no notice. And so when Megan was growing up, if she was discouraged about something, I would just tell her, just put up your umbrella because the season is never going to stay the same. The season is always going to be changing.  And I think sometimes people get discouraged in life because they think the season they’re in is going to be that way forever. And that is not the case.

VALERIE – I also have a strong symbolism in my mind about umbrellas in that life is hard. And we do need protection. And for us when Megan was diagnosed with cancer, friends became our umbrella. And they serve significant roles in getting us through the process.

JANA – And how did your self-care change over time from the time she was diagnosed, and going through her cancer treatments, because I know you struggled with your own self-care during that time as well.

VALERIE – I did. Up until her diagnosis – we actually lived right across the street from a really nice gym. And so I’d be lacing up my shoes to go work out at 5:30 every morning. But then once Megan was hospitalized, and again, she had so much excess cortisol, she wasn’t sleeping, so I wasn’t sleeping, and I was getting her medication at four o’clock in the morning. So it kind of slowly began with, I was no longer making that 5:30 workout time.

VALERIE – And I kept thinking in my mind, this will change soon. It’ll be better tomorrow. But then I woke up 44 months later and my daughter was gone, and my body was kind of down the river. So again, I kept thinking it will get better tomorrow, when I should have been more in a mode of managing it other than crisis. But I thought, well, if we just get through this week in the hospital, then I’ll get back to normal. It never got back to normal.

JANA – And Megan was living with you, I take it?

VALERIE – Right. She had just graduated from college, and so she was going to start looking for an apartment, But instead, again, she was hospitalized and ended up never being able to move out on her own. And even when she was in remission, looked beautiful, felt wonderful, but she had limitations in being tired. And I was still paying the bills. She couldn’t quite work full-time yet.  I was still handling a lot of things.

JANA – On your own.

VALERIE – On my own, yeah. And you know what?  We had been married 25 years, and my ex-husband left me two years into Megan’s 44-month cancer journey, which was not convenient or easy, and so then that just continued to spiral out of control that I wasn’t taking care of myself. So I didn’t have a backup person to [say]  Hey, I’m going to run to the grocery store. It was just me and Megan until the end of her life.

JANA – Mm-hmm.  Wow. Do your siblings live nearby?

VALERIE – No, they live on opposite coasts.  So I need to say, as they could, with Megan my sisters were wonderful and flew in and did lots of things to care for us on a variety of levels. They were very good to us.

JANA – So Megan was diagnosed it I think I read in 2004. And she died on Easter in 2008. Is that correct?

VALERIE – That’s correct. Easter Sunday, 2008.

JANA – And Valerie, you also had parents who needed a lot of care, and your parents’ care fell to you. Both of them. Tell us about your parents’ illnesses, and how you move through those in terms of caregiving.

VALERIE – Well, one thing that I haven’t talked about much is that the week that Megan was in the hospital having her adrenal gland removed, which was her very first surgery and us just getting the news that it could be cancer, my dad in his early 60s was diagnosed with Chronic Lymphatic Leukemia – CLL.  And he had managed it really well. But the week that Megan was at Methodist Hospital, removing an adrenal tumor, my dad was at Emanuel Hospital on the other side of town, literally with his life hanging in the balance, from an infection.  And my mom was not handling that well. So my sisters called me and said, Can you go talk to Dad?  Dad seems to be losing the will to live. So after I got Megan home, I drove across town and I went to my dad, literally, and he was in isolation, and I just said, Listen, dad, not a good time to die.

JANA – [laughs] Sorry.

VALERIE – It is not a good time to die. [laughs] You need to pull yourself together because I need you. And I mean to tell you, it was as simple as that.  My dad pulled it together. And again, the will to live is a powerful thing.  And he ended up outliving my mom. But anyway. So dad had sort of been a continual dealing, you know, every few years he’d have something come up to treat CLL.  But anyway, I was pretty devastated after Megan died. I had not only lost my daughter; my marriage was over. I had essentially lost my business because I spent four years taking care of her and not taking care of business. And we lived in a pretty big home that I had to just let go of in a bad economy. I was completely devastated.

VALERIE – But I started to feel at some point, life coming back.  My friends were good to me. And one day I was getting ready to go to a wedding and the phone rang. And I was really thinking that day, I’m going to go to a wedding and a dance. There’ll be food and people and the phone rang and it was my dad and he said hurry to the hospital, your mom is really sick. And so I rushed to the hospital, and they x-rayed mom, and by the end of the day they told us that almost for certain that she had lung cancer. And she died – I don’t know, six or seven months later.  And then no sooner after my mom’s death, Dad came out of remission from leukemia, and he died 13 months after Mom.

JANA – How are your parents when they died?

VALERIE – Mom was 80. And my dad was 85. So in all three people, I was responsible for moving them into hospice house. And it ended up that mom was with her brother when she died. But with both Megan and Dad, I was with them when they died. And it just – I mean, three people, it’s too much for anyone is what I gotta say. Like, too much for anyone.

JANA – Yeah, I mean, I would have completely fallen the pieces. How did you move forward? And tell us what sort of feelings came up for you over the course of your care – or caring?

VALERIE – I sort of felt like, what the heck am I living for? I think I wasn’t suicidal as much as, gosh, I just really wish that I would have been that day’s traffic accident and it would be over. But I just, I kept moving forward. And after Megan died I sort of stopped going to church. And then somewhere around the time that mom died, I started going to a new church with a fantastic pastor who really preached about seizing your full life, your full gifts.

VALERIE – So I started writing more. And I mean, it became kind of little baby steps. I have a good friend who was helping me. And it was just like little things, tiny little steps to move forward. And also sort of this, in a funny way, like, someday when I step over into eternity, I don’t want my daughter waiting there and saying to me, What the heck were you doing with your life? So I didn’t want you down there all sad all the time.  And she, she would say that to me. So I wanted to somehow figure out how to live a full and happy life, even though it was going to look completely different than what I had planned years ago.

JANA – I want to continue on that thought, but before we go there, I wanted to ask what kind of support do you wish you had during those caregiving years?

VALERIE – I wish that – let’s see, what is the saying that, you know, you don’t really need advice, you need somebody to come do the laundry.  And I got tons and tons of advice. But what I really needed was people in relationship. And, and it was so it was twofold. I accept my responsibility, in that of all of my friends – and I had a wonderful group of friends –  I was the only one that lost a daughter. All my other friends had daughters that were getting married and having daughters, and their lives were moving on in a different way.

VALERIE –  And I can’t fault them for that. But we – I saw that I was living worlds apart. So I needed to find, I don’t want to say a different group of friends, but a different group of friends for my everyday life. After Megan died, I felt like there was this incredible silence and people didn’t know what to do with me, I didn’t know what to do with me, and so there were people, sadly that I didn’t see for months and years. So I just needed presence, presence, meaning people being with me.  I  didn’t advice. I needed people around me.  Even if I wasn’t so cheery when they were around me, I really needed people.

JANA – During the course of these years, did you hear people who said things that maybe you didn’t want to hear even if they were well-intended? Like you know, You need to take care of yourself, or Caregiving is a gift. Did you hear those sorts of comments? And if you did, how did you respond to people who may have said things like that, that you didn’t want to hear?

VALERIE – I probably just looked at them glassy-eyed and was externally polite, but internally, I don’t think I could say it enough that, of course, I was glad to care for my daughter til her last breath. But there’s things about caregiving that hijack your life. I mean, if your life is hijacked, meaning that you have hopes and dreams as an individual, and suddenly someone is very ill, and you’re on a plane going to a place that you’ve never wanted to go.

VALERIE –  And I needed people around me that could acknowledge, not to be a martyr but what you do have to give up to be a full-time caregiver. And you know, again, I imagined a decade ago that I would be married in my beautiful home with my successful business, surrounded by children and grandchildren. And here I am now – I have a different life. And I have a happy life. But it’s – because of cancer it’s so very different from what I ever imagined. And so the “caregiving is a gift” is… I’m not resentful, but I’m not so completely in that camp, is the best way to put it. Because it’s a job that you don’t necessarily apply for and get advance notice on.

JANA – You got that right. You know, we hear a lot about caregiver guilt. Did you feel guilt?

VALERIE – I felt guilty sometimes when I did take time for myself. And the dynamic that I’m seeing now is, for example, with Megan, I mean, Megan loved me. But I was – she wanted one person with her all the time, and that person was me. And so I remember one day, I went out shopping, and it was just time for myself. It wasn’t even about buying something. It was, I was at the mall, I had a pretzel. I mean, I wasn’t making chemo life and death decisions. I was buying a pretzel.

VALERIE – And I came home so happy, almost like free-falling happy, because I’d done so little for myself. And Megan could sense that. And I mean, she’s human, too. She’s like, You seem so happy to be away from me. I’m such a burden. And then she said things that sort of sucked the life out of that whole afternoon. And she wasn’t a bad person.  I mean, we all say things we don’t really mean.

VALERIE – And so I sort of started from there to shut down and not do so much for myself because I didn’t want her to feel bad.   I didn’t want her to feel bad. And then you know, one thing I say is that it wasn’t Megan’s responsibility to care for me, because she was fighting for her life. And so one thing I like telling caregivers is you absolutely must fight for your own life and your own health. Because the other person, even if they love you to pieces, they can’t do that. Because it takes all their energy to fight for their own life.  So… I mean that’s the simple truth of it I think.

JANA – Mm-hmm.  We hear a lot about the importance of taking care of yourself, and I know this affected your health. Tell us how this affected your health, and what was the turning point for you in terms of saying, That’s it.  It’s time to take care of me?

VALERIE – Well, first of all, I sort of had gone on a phase where – I had always been the kind of girl that, I would get my annual mammogram, etc., – that I didn’t do that for a number of years, because I thought, if it comes back as cancer, I am not going through treatment. I’ve had it. I’ve had it with cancer centers. But my blood pressure was really climbing. And I did finally go to the doctor and I was on the borderline of needing to be on blood pressure medicine. And I was getting close to 200 pounds.  And I’m only five feet five.  So that was way too much weight for me.

VALERIE – And my son had just moved to London on business. And I really started to think of how again, my mom and dad being ill, hijacked my life, to care for them. And with one remaining son, who lived across the pond in England, I didn’t want to have a health crisis because I didn’t take care of myself and he would be hijacked over here to take care of mom, who didn’t do her part. And that was my number one motivator – was, I started to think, I gotta pull it together for this son that I love. But I was so far down the river, I didn’t know how to do that.

VALERIE – So my one good friend, actually she’s close to Megan’s age and we met through church, and she competes in Nebraska in all-natural bikini bodybuilding. Plus, she’s a coach in that arena. And you know, she never was like the kind of friend that was like, Hey, Val, you need to lose some weight. But a year ago this month, she has a swimming pool in her backyard, and I was floating on a raft and so was she, and I looked over at her, not comparing my body to hers, but comparing my fitness level to hers, and I was like, I have got to get a grip.

VALERIE – And so she has a nutrition and life coach, Matt Jackson, and he coaches primarily girls that want to compete. But I was very fortunate that he took me on for nutrition and life coaching. And that Labor Day weekend moment completely changed my life. He kind of pulled the rug out from under me and made it perfectly clear all the ways I wasn’t taking care of myself, completely revamped my diet, made me start putting myself first and logging that. I still turn a log into him every Sunday night. But sort of like inch by inch and pound by pound, I’m down 47 pounds, my blood pressure is the lowest in 40 years. And I feel absolutely fantastic. I’ve gone from a size 18 to a size 8. So buying clothes is absolutely a delicious endeavor. It’s been nothing short of fun. And the fact that I feel more alive, hopefully I’m more fun to be around and I have more friends, and everything started to snowball in the right direction.

JANA – And when did you undergo that process? When did that start for you?

VALERIE – It started Labor Day weekend last year with – again, his name is Matt Jackson.  I call him the boss because he’s the boss of my food supply. But again, it’s been slow and steady wins the race. Matt was also really good about making me put down victories that are not on a scale or not on a tape measure, such as I really hadn’t been clothes shopping since Megan died, because that was our thing together. And I would feel a certain anxiety when I went to stomping grounds that were our memories. And so like, I sent him an email – and he’s a husband and the father of two girls, and so shopping is a big thing in their homes. So when I emailed him and said, I went shopping today and I bought something and I didn’t cry. And he called me and said, Did you – what did you say? And I’m like, you need to see that – I mean, I was really leveled when Megan died.  Everything changed. But just those simple things, I started to feel life coming back in a new way. And it’s been really wonderful.

JANA – Wow.  It sounds like you really rediscovered the person you were before all this happened.

VALERIE – I think I not only discovered her, but I discovered her more than I imagined in that, again, you know, my mom almost died when I was eight. So there was a sort of this canopy of caregiving that’s always been over my life. And I’m at a phase right now that absolutely nothing is tethering me down, I only have to take care of myself, and I have a wild little Boston Terrier that I call the little monster, but those are my two responsibilities in life. And it’s been very liberating.

JANA – And how old are you? May I ask?

VALERIE – Yes, I’m 59.

JANA – Okay.  Wouldn’t it be great if there were some sort of financial reimbursement one could get for undergoing this sort of personal training, because it’s not cheap, right? You spend a little bit of money.

VALERIE – Right.  I train with Matt every Monday for an hour.  All the other days of training, I’m on my own at a gym.  Plus the nutrition counseling. So I mean, I’ll just tell the audience, I spent 300 a month on that. But if I had gone on the course of needing cholesterol and blood pressure medicine, plus doctor visits, I probably would have been shelling that out for medication –

JANA  – alone.

VALERIE – And so a lot of people say to me, Well, I wish I could afford that. But again, it was going to be a trade-off on my health care plan. That would have been my out of pocket for pharmacy, if I hadn’t done something quickly.

JANA – And that’s a really good point. And I know that you’re competing for the second time in the rowing competition. Tell us about rowing and how that’s helped you.

VALERIE – Well, I mean, I’m kind of lazy. And even in my time under Matt Jackson, he has me doing cardio every day and I just don’t like pushing myself, you know.  And I’d be there on the elliptical and he’d be sending me, you know, every couple days a text that said push yourself, and I’d be like, ach… I just don’t like doing cardio.  I’m fine with weightlifting, but – and I did the best I could.

VALERIE – Well, at the end of last year, he put me on a Concept 2 rower, and I just – for whatever reason – I really liked it. I thought, oh, this is fun. You just go back and forth on a little, on a little seat like a scooter, and it fits right.  Anyway, Matt just said, You’re good at that, we need to do this more often. Well a friend of mine was competing in the Creighton 2K row, at Creighton University which raises money for their team. And she said why don’t you do that with me? And I just thought it was fantastic.

VALERIE – And so I entered in the 50 to 59 group. And it was my 59th birthday. And I went by myself, which was – I met Diane there, but that was kind of a big deal for me to do something athletic out of my box. And I came in very last place. The very last place.  But my son really encouraged me – ’cause he rows a lot in London – to keep doing it. And at the exact same time the gym that I worked out at brought in dynamic rowing. And so I thought, Oh my gosh, that is more than a coincidence. I like rowing and I want to be better at it.

VALERIE – And so coach Trevor Fleming took me on and he trains me several times a week, so that hopefully I can go back on what will be hours away from my 60th birthday, and compete again, and instead of this year being last place, that I’ll medal, and have a respectable time in my arena.  To the audience that rows, that means I’ll have to do a 2K in probably around eight minutes, which for an almost 60-year-old woman is, it’s really – really booking it.

JANA – Wow, I’ll say.

VALERIE – But that’s my goal.  That’s my goal.

JANA – All right.  And Valerie was tell us more about your son, because he’s the other sibling who probably went through a lot himself when Megan was sick. Was he around?

VALERIE – Yeah, he was in college. And it was hard on him. I think – I need to be honest and say, I think very little is written or known about siblings that lose another sibling. And even, like at Megan’s funeral, I think it really swirled around Megan’s dad and I.  How are you? How are you doing?  And I think siblings can be left out.

VALERIE – But my son is quiet, and private.  Megan’s illness… he made a career change kind of as a result of that. But he had a tenacity of spirit where he pulled it together, rose to the top of his company, relocated to London to open their European office and has built a fabulous life for himself. And again, we’ve been sort of moving on different tracks. But my son dug deep to pull his life together after his sister died. And I’m really proud of him.

JANA – That’s really great.

VALERIE – Yeah.

JANA – I think you may have answered this before, but I’m going to ask it in a different way. How would you describe your emotional state now versus 10 years ago?

VALERIE – I mean, even 10 years ago… well, let’s just say even 14 years ago, you know, I was a mom and a wife and I had a business and my life still really revolved around taking care of everyone but me. And I think I was getting lost, even before my daughter was diagnosed with cancer, if the truth be told.  I mean, I had a successful business. But the goal of that business was to pay for college, to pay for braces, to pay for private school, to pay car payments.

VALERIE –  So much of what I did was to give my kids a better life. And I’m not sorry about that. But I think I was getting lost –  again, before Megan’s cancer diagnosis. So I mean, I need to tell you – I mean, I wish I could have my daughter back, but I have a happy life right now. And especially at the gym, I have this huge support group of friends that I really enjoy.  Again – very different life from what I imagined, but it’s a good life.

JANA – Mm-hmm.  So what would you say to people listening to this show that maybe you wish someone had said to you, during the decade of your caregiving?

VALERIE – I would say that only one person is responsible for taking care of you, and that’s you. And that you have to lay aside the guilt, the schedules, and realize at the end of the day, we stand accountable for our own lives. And I did hire Matt Jackson to help me on the nutrition end, but I realized that what I put in my mouth, when I went to the gym, how I cared for myself – that no one was responsible for that other than me.

VALERIE –  And maybe all of us want to be cared for or have people do things for us. But when it comes to personal health and happiness, you’ve got to dig deep and get that within yourself.  Even against the odds of caregiving, where – I would tell someone if they were in my situation and had a daughter that was as sick as Megan, I would want to be the kind of friend that came in and said, Let me see your schedule. This friend is going to come on Tuesday nights, so that you can go to the opera or you can go do this, and – people need each other. There should have been a more comprehensive backup system for me to be away from Megan more.  ‘Cause by the time she died, I was on empty.

JANA – Yeah. So did you have any respite at all? Did you look into local resources for that?

VALERIE – I started to, but again, Megan was kind of different in that for people that have cancer, only 10% have pain, and of that 10% that have pain, 10% have unmanageable pain.  And she had unmanageable pain. And so she was, oh my gosh, so completely miserable, and essentially paralyzed at the end of her life. And I think there would have been places I could have gotten help. But again, she only wanted to be with me.  But that was my mistake. I should have been more firm and saying, You know what?  I’m going to have nothing to give you if I don’t get out once in a while. And there are other competent people that love you that can be with you and help you. But I wasn’t – I didn’t get the manual to be more firm in that.

JANA – Right. There’s no user manual, is there?

VALERIE – No, I didn’t get the user manual.

JANA – Well, what’s next for you Valerie?  And tell us if you have any closing thoughts.

VALERIE – What’s next is that I’m on the homestretch of finishing my book, “Put Up Your Umbrella: Finding Shelter in the Storm of Cancer,” which hopefully is a manual to someone that I didn’t get. And then after that, I’m working on booking speaking engagements to come in and talk to groups of caregivers. Hopefully, my life experience can teach someone so that their life is not so hard. Let’s see what else is on my plate. I need to train my Boston Terrier to not be such a little monster. That’s on my list. I’m meeting with a dog whisperer this week. And then let’s see, continue to work out and hopefully go to Europe around the time of my 60th birthday and be with my son and do something wonderful.

JANA – And are there any other thoughts that you’d like to share with our listeners before we go?

VALERIE – It’s not very cherry, but people need to know that 30% of caregivers die before the one they’re caring for. And that is a staggering, sobering statistic.

JANA – I’ll say.

VALERIE – And I think people should be motivated by choosing the right thing, and by joy and not by fear. But I think a caregiver needs to evaluate their life and realize, Oh, my gosh, what would my loved one do without me, if I don’t take care of myself?  And how that 30% – what happens is, caregivers are distracted in traffic and they get into car accidents, they miss their own annual doctor appointments. And I know this feeling because you’re so tired of going to the doctor, so you don’t go to your own doctor appointment. And things like maybe a colonoscopy or a mammogram that might catch something in your own life early, you let it go and you lose your own life.

VALERIE – Again, if you’re a caregiver, you can be just so very tired that you don’t see the value in your own life. But every human being has extraordinary value and offers something to the universe that no one else does. And people need to lay hold of that.

JANA – It’s so hard for women, isn’t it? Because we’re the ones who do the majority of the caregiving. I know that men sometimes pull their weight too. I’m not trying to be sexist here. But I think women really struggle with this issue of taking care of ourselves. And we don’t want to hear other people saying, You really need to take care of yourself. Well, yeah, we know that.

VALERIE – You just have to get in a mindset. Hopefully, before I did – and it was a doctor essentially telling me you’ve got one foot in the grave, you better pull it together – that we get in a mindset that you want your body 10 years from now to be thanking you for what you do now. And, I’m a generation that can still see moms not working outside of the workforce. And it was expected of my mom – she was a stay at home mom – and their job was just to take care of everyone. Same thing with my grandmother. My grandmother didn’t get her first job outside of the home until she was in her 50s.  And so at least in Nebraska, society said: women stay home and take care of everyone.  That is your job. Obviously it’s changing but – and also women are more, I believe, more maternal. I was glad to take care of my parents and be there for them. But I wasn’t glad about my life being hijacked.

JANA – Valerie, tell us where we can find you on online. Where can we learn more about you?

VALERIE – I blog at ValerieBourdain.com.  And I have a Facebook author page. And it would be Facebook/ValerieBourdain.  I would say those are the two main places to find me.

JANA – Valerie Bourdain.  What an incredible journey, and inspiring in so many ways. Valerie’s forthcoming book is in the works, so be on the lookout for that.  And be sure to check out the Agewyz website for a link to Valerie’s terrific blog. Thank you so much, Valerie. I really appreciate you being on the show.

VALERIE – It was my privilege and again, all the best to every caregiver

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