Kate Washington, Karen, JEN discussed on 1A

KQED Radio
| KQED Radio


Now is Kate Washington. She's the author of a new book called Already Toast. Care, Giving and Burn Out in America, Kate. Welcome to one, eh? Thank you for having me. You've been your husband's caregiver for the last six years. Tell us your story. Well, I was 42. My husband was 44 when he was diagnosed with a rare form of lymphoma. Our Children at the time were five and nine there 15 and 11 now, um we were not really expecting initially. The diagnosis to be a severe is it was we were originally told that it might be an indolent form. Of the cancer that might not need much treatment and might be just watching wait. But he had a kind of catastrophic event where a tumor in his lung burst and he was admitted to the hospital on an emergency basis. Had chemo a long course of hospitalizations and eventually a relapse, which led to a stem cell transplant with a lot of complications. He was hospitalized for more than four months. Due to a complication called graft versus host disease when he was Discharged from the hospital. He was on intravenous nutrition, mostly blind, unable to walk unattended and in need of 24 hour care. I was fortunate to have a lot of family help. In a lot of community support. We also were able to hire in home caregivers to help so I had a best case scenario and it was still incredibly grueling. He is now doing much better is much more independent. So I at this point, consider myself more of a care partner. Which sort of afforded me the time and space. You write the book, but it's still a journey that has left its mark on her marriage. When this first started, how equipped did you feel to take on this role financially, financially, physically mentally. Medically. We were fortunate to be well equipped financially and also to have great health insurance and benefits from his job, so We were more fortunate than most caregivers and ill family members. In that respect In terms of mentally I was not thinking of becoming a caregiver in my life at all. My Children were young. They were in elementary school. I was hoping to Kind of get back to more of my career is a freelance writer. And medically, the demands of caregiving came as a great shock to me. He was discharged from the hospital needing Ivy antibiotics, and I was really surprised to learn that I would be doing a medical task with very little training and I think that's a common Surprise for many caregivers, the intensity of the care that is required to be given at home and that falls on family caregivers. What's been the toll on your mental health and on your husband's mental health. It's been really challenging it. We're definitely doing better now. It was really all consuming during the most intense years. In my case of caring for a spouse. All care. Getting situations, of course, are different for me. As a spouse, you lose your primary support person. That kind of it the time you need the most, so that was a Really difficult situation for me. Um I know their role reversal, concerns with Children carrying for parents and similar similar issues in many kinds of caregiving situations. The intensity and the need to juggle caring for young Children and carry on with all the other details of our lives really left me stressed and burnt out and That's why I moved toward writing the book because it seemed like such a hidden problem that was more common than anybody is really realizing You talk about burnout, and I know we discussed the You know the medical services that you may have access to or you said you had some family support. But what were the part of this experience that You felt remained hidden. And maybe there just wasn't enough support around. I do think the medical the medical demands. Were an issue that Really struck me The fact that there's not insurance coverage by and large for home health aides, you know when my husband came home from the hospital after his stem cell transplant, his physician Told me directly that he needed 24 hour care that he couldn't be left alone. Even for a moment. And of course, that's completely impossible for one person to provide or even a few family members, and I said, You know, I Have Children who have to go to school. I have other demands in my life, and he said, Well, usually family steps in and it works out fine. And you know, our our family had already been stepping in and was giving all they could and the demands of Brad's care. My husband, Brad, were Just going to be too high. And I think that before going into it, a lot of people would assume that there would be insurance coverage for the medical needs of that kind of 24 hour supervision or more assistance than I found was available for The higher level tasks of care and such a Assumptions on the part of the medical system were a real surprised me. And I think come as a surprise to a lot of caregivers were talking to Kate Washington. She's a caregiver or what was the term you used now, Kate, I think of it now is a care partner because my husband manages much more of his own Karen very fortunate in that regard. So Kate is a care partner and the author of already toast, Care giving and burn out in America, and I want To bring another voice into the conversation. Dr. Jason Carlisle wish he's a physician in the co director of the Pen Memory Center at the University of Pennsylvania. He's also the author of the Problem of Alzheimers, How science, Culture and Politics turned a rare disease into a crisis. And what we can do about it. Dr. Carlo Wish welcome. Hi Jen close to be on one it so tens of millions of people are.

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