My Advice to Other Caregivers: Stay Positive and Never Give Up

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Brett Skonicki and his wife, Barbara, were in their early 40s and in the midst of raising four children, when Barbara was diagnosed with chronic lymphocytic leukemia, CLL.  Brett explains how he coped emotionally with his new role as Barbara's caregiver and how he managed to stay strong and positive for the sake of his family. Brett shares his advice for other families facing a CLL diagnosis and why, after all he and Barbara have been through, he feels "very blessed."

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power. I'm Andrew Schorr. Brett Skonicki and his wife, Barbara, were in their mid-40s and raising four children,when Barbara was diagnosed with chronic lymphocytic leukemia. I asked Bret how they coped.

Brett Skonicki:

You know, it's frightening at first.  The first thing the doctor said to us was, “I'm going to tell you a word and don't freak out when you hear it.” And he said, “The word is leukemia. “ Well, I don't care who you are, you're going to freak out.  Your first reaction in your mind is things shut down, and your head starts spinning, and, you know, we look at each other and like, oh, my god, this is the end, and what's going to happen and what about our four children?

And both of our reaction was oh, my goodness, is this hereditary?  She never even thought about herself.  The first thing she thought about was the kids and what was going to happen.  So it's scary.  At that time, our youngest child was 10 years when we found out, and that was about nine years ago.

You know, the next thing we did is we discussed it, the two of us.  We sat down and said, all right, what's the next steps  And the doctor said for Barb at that point, she was in a watch and wait, so for us to wait that meant, all right. Well, if there's nothing that's really going on, do we really need to freak out the children at that point.? So we kept it amongst ourselves for about a year.  And our oldest at that point was being looked at for soccer scholarships around the country, and we didn't want him to make his life decision based upon what was happening to his mom, so we kept it to ourselves.

Andrew Schorr:

Brett suddenly found himself  being thrust into the role of being Barbara's caregiver. How did he stay strong?

Brett Skonicki:

It's a tough place to be, right, because if—you may be having a bad day as the caregiver, but part of you has this guilt reaction and going how dare I feel bad when you look at your, you know, the person you're taking care of, the one that you love more than anything in the world, if she's having a bad day and you're having a bad day, it doesn't compare.

So I looked at it my role, I was the role of almost cheerleader for my children, right?  I had to be the guy that was the one that was always positive, that was up no matter what it was—and the same for her, to be there for her if she was having a bad day or a good day because there were both.  But, yeah, the emotions, that kind of tugs at you.  It's like I'm going to do everything I can.

And I was always the provider for the family, so Barb wasn't working. So I had a job that had demanding hours and responsibilities, and you end up being—sometimes you think of yourself almost as a single parent.  But I still wouldn't trade it for anything in the world.  If we had to go through this again nine years ago, I'd sign up for it because to help her and to get through with where we are today, we've learned so much about each other and about what really matters in life. And as a caregiver, what matters in life is helping take care of that other person and always being there for them and never giving up.  So that was a great message for us.

Andrew Schorr:

Telling your children about a cancer diagnosis is never easy, believe me. I asked Bret how his four children reacted to the news.

 Brett Skonicki:

You know, for all four, each one reacted differently though.  The oldest was, he was a little quiet about it. The second one was to make jokes about it.  The third one did the research, and the fourth one was almost too young to understand.  But the oldest one, when he finally did realize what was going on and he, as I said earlier, he was being looked at for a soccer scholarship opportunity.  He was given a scholarship in South Carolina at Winthrop University.

And he had decided, at that point we told him, he said “I'm going to walk away from my scholarship.”  He said, “My place is at home,” —I get emotional—“with my family.”  And, sorry, but we said, “You know what,?” His mom said, “You have to live your life for you.  You're not going to live your life and change it because of what's happening at home.  So the best thing you can do for us is to go and live your life.  And don't stop.  Don't give up. We're going to be fine.  We're going to make it through.”

And he ended up going through and having that scholarship, and his second brother went to the school, the third one did.  That school did a bone marrow drive on my wife's behalf.  They've got hundreds of students in the National Bone Marrow Registry because of it.  So life's decisions, it's funny how they can take you down certain paths.  So we—you know what?  As bad as this is, we're very blessed.  That's how we look at it.

Andrew Schorr:

After all Brett and Barbara have endured, I asked Brett what advice does he have for other families, caregivers and patients facing a CLL diagnosis.   

Brett Skonicki:

You have to stay positive no matter all the negative that may come about it.  There's different treatments and there's going to be hurdles.  There's going to be ups, there's going to be downs, but at the end you've got to keep that positive attitude.  You have to fight. Never ever give up.  Continue to fight.

Andrew Schorr:

Thanks to Brett Skonicki for sharing his story and also be sure to watch the story we have with his wife, Barbara. It’s among the many inspiring stories we have with patients. So be sure to sign up for alerts on our website, so you know whenever we post something new. I’m Andrew Schorr. Thanks for watching. Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on December 5, 2014