Published on October 11, 2016
When is it okay for a caregiver to take a break? Care partner and co-founder of Patient Power, Esther Schorr, hosts this online discussion as patients and care partners share ideas on accepting help and support. From accessing help within your community, to getting and staying organized, and even saying “Yes” to a manicure, care partners and patients Gail, Kris and Bob reveal how they stay on point and take breaks.
Transcript | Saying Yes to Support As a Care Partner
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.
Were there any other sort of practical things that you used?
Was it helpful—people during your—during the thick of treatment time bring food, or did you engage with cleaning services? Or anything that just made the day to day easier for you that might recommend to other people who are getting started and feeling overwhelmed?
Okay, one of the—the first thing I said was there are services out there that will come in and help you with house cleaning. They’ll come in for the first four weeks after diagnosis. There’re lots of community transportations services that will take you to the doctor or the hospital or even shopping if you need. And most of these are free or almost no cost. It’s just a matter of getting in touch with somebody, probably at the cancer center where you’re being treated. They will have a patient services person.
Leukemia & Lymphoma Society, American Cancer Society, call any of them, and they can guide you to local community resources. They’re very knowledgeable. I wanted to go back and mention a thing that I heard from Kris and Gail—not Gail, but the other. Laughter is so important in our relationships, and that’s also something that got through—how my wife and me get through with what we were dealing with. The other big thing I’ll mention about support again is a community support group. Those people will pitch in. Your church can pitch in—your PTA, your school, whatever. There [are] people out there always willing.
We have family in the area, fortunately. We didn’t have to call on them too much, but my stepdaughter lives about two miles away. She was here quite often just checking to make sure everything was okay.
She’s caring for somebody herself, so she doesn’t have a lot of time, but she was there. So there’s all kinds of stuff.
No, that’s helpful, Bob. Anybody else have something in that list of when all else fails have somebody—have something else help you?
I do, one thing I found out, and I actually found it from another caregiver who had cared for her husband at UAMS. And the most important thing I did for Stephanie and I was I had this little book that actually UAMS gives out, and it’s a daily planner. And it became—I went nowhere without it. I wrote down every medication, what time she got, when she was getting her filgrastim (Neupogen) shots, dates she—what her counts were as each day went by. And what was—what kind of reaction she had to that particular medication that day. Like, okay that night she threw up.
She was—because she’s young, child-bearing years, she was that one that was just gonna throw up all the time, and it was tough. Nothing they could give her would stop. It was—trust me, they threw it all at her and so—and they say that’s common with young women. But we learned about the different cocktails that she could take that would at least help it or a particular tea that she would drink that would help. And so when we—she did the same two inductions, two stem cell transplants, two—what’s the last two?
Consolidation, thank you. That if we could look back at—okay, day 10 she took this same medication, and what was her reaction? And what we did for it, we could be ahead of it this time and not only that, it’s only gonna last another 12 hours.
In 12 hours, it’ll be done. Now, it may be in 12 hours it’s gonna be another problem, but we would be prepared to tackle that and take it one day at a time, sometimes a half a day at a time. I found that I could not live without this book, and then I also had a binder that I kept all of her tests, all of her labs, everything, and I can’t tell you handy that came in one night. We were in the ER, because she’d spiked a pretty good fever, and it just so happened it was the night that they were switching over to a new computer system, and the computers went down in the entire hospital. And so, here they put Stephanie up on the myeloma floor, which is amazing.
Spent some time up there, and they lost her. They didn’t even know where she was, because there was no computer to tell them.
And you were the backup plan.
I was. I had my book and every—and it was like 1950. The little nurse came in, and we’re doing a pen paper history and physical. And she says, “So what meds is she on?” Well, you know the meds are 40 different meds, and so I could just hand it to her. So, I can’t—and we had a rolling bag—a wonderful rolling bag. Got it online for $29. I kept everything in there. She had her chemo blanket. We had our waters. We had our things we sucked on. We had our snack. We had our books. And when she had to carry her urine around, it went in there. It just—it’s little things like that and I found that—going back to another question where we talking about what you did to help you get through these things.
I found rather cathartic for myself when I would see somebody new and especially the young people, because it’s just different—not better or worse, I’m not suggesting that. It was just a different approach. Some of their symptoms are different, but there’s also a mother there with them instead of a spouse. And so I found that I would talk with that mother, I would talk with that father, and occasionally it was a spouse as well. But typically the spouse was somewhere with the children, or everybody does it differently.
And so that was very helpful to me to be able to share my wisdom with new patients, and I would also learn from older patients tricks, and we found out some of our best information from patients that had been through this.
That I had learned something new just by a fluke, and so I’m not sure I even answered that question.
No, no, no you did, and I think what we’re sharing is everybody’s got something that helped them feel more in control. I could totally relate to the notebook, because I remember after about four or five years after Andrew had been in treatment for the CLL, we were packing up some stuff and cleaning out the garage and I found huge notebook with all of his blood counts, Because with leukemia it’s like you’re looking at the white count going up, and the red count going down, and how fast was it doing that? And you mentioned the thing about going back to the 1950s before the Internet and computers. The truth is that’s probably a really good tip that whether you put it in a notebook or you put it in your phone, your smart phone in a note program, major stuff that’s a good idea, because computers are linking us.
And that’s especially in an emergency situation.
And another thing is several sets of sheets because when they’re going through chemo, they’re—I changed her sheets every single day. We came home from the infusion four, she took off her clothes, and we put on fresh sheets. It made her feel good, but it also kept some of the germs away. And I will tell you, she didn’t get one infection while we were there. I was a real cleaner, so lots of sheets come in handy.