Recently, we were recommended a book for its caregiver-relevant concept and content. What we found was a deeply personal and visceral look at the caregiving process for a spouse dying of cancer. Because of the author’s unflinching honesty, In the Valley of the Shadow: A Manual for the Left Behind,”voices all of the thoughts and feelings that arise as caregivers, ones that most of us are too ashamed or afraid to admit. Deb Katz, the author and illustrator is all normal and part of the process. We spoke with Deb Katz to find out a little more about the story behind the book.
I understand that In the Valley of the Shadow began as a diary. When did you first consider turning it into something for others to read?
I really started it as a personal experience I was not thinking in any way of helping anyone else and I don’t even know if I was thinking about helping myself. It just became a place where I could be me, where there weren’t people around who wanted me to be better or to confirm that I was going to be okay or that they were doing what they could for me. This was the only place of solace and peace where I could express whatever was going on. It became a confessional, a place to share “unacceptable feelings.”
You illustrate through drawing and writing the “unshareable and unacceptable” feelings of loss. Did you have “unshareable” feelings while caregiving as well?
Yes. I don’t know if I comprehended how much [caregiving] took out of me, let alone people who were helping me. In one sense, the most heartbreaking process for me was my husband turning into a patient. He was no longer himself—he had transformed into someone I had to take care of rather than share a life with. There were times that it got so frustrating that I talked about taking him to the hospital and letting him deal with it there, rather than me. In some way I think he knew I wasn’t going to do that but there were moments when I would wake up in the middle of the night terrified because I didn’t know if I was doing the right thing.
You lose your life and your identity in the process of being a patient and being a caregiver. You become part of this factory of sickness. You do the best you can and it’s never good enough. You’re always feeling half assed. There was rarely a day when you go “Okay we’ve beat this!” There were moments like that but much of the time it was slogging through.
[At one point] we felt my husband was getting better. He was on this alternative treatment and doing really well and the doctor was amazed at how well he was doing. And at the point he told me he really felt like himself again he stopped doing the treatment. He became incredibly angry. He became resistant. He took his medication and threw it out. It took six months for him to die after that. I don’t know if I’ve fully forgiven him for the choice he made.
Was this a choice he had communicated with you?
He wouldn’t talk about it. I think he felt so helpless and dependent. That was something he could never tolerate. He had a lot of guilt for bad things he experienced himself as doing. He was not a saint. I remember one day—and this is in the book—he turned to me and asked “Can you ever forgive me?” And I said, “Of course I can forgive you. Can you forgive yourself?”
It made it more excruciating because I wasn’t just fighting the [cancer] but I was fighting him in a way. Because I wasn’t ready to just let him throw in the towel. And whether I should have done that or not—I don’t know. But I couldn’t, for my sake, for the kids’ sake for our friends’ sake. I couldn’t just surrender like that.
How did you maintain some semblance of self?
Well I was working throughout caring for him so I never gave up [that]. I also had people who were incredibly generous who wound up sending us money so I could continue [working] because it was really hard—I do a lot of traveling and the one thing I couldn’t do in terms of work was traveling. [Caregiving] was like juggling all of these different arenas and, in some ways, feeling incompetent in all of them.
Past a certain point, if I got through the day, if I was able to get through what had to happen, then that was a major victory. And as Fred got sicker, he just pushed us all away. I hated him for that. Of course I felt terrible for hating him, this guy with cancer, how can I hate him? And yet I did.
One of the things that I think is hardest for caregivers is how alone you feel in the process of taking care of someone even though it seems like you would have a lot of contact and you’re so connected. In fact it’s the opposite—you’re completely isolated and alone. That’s excruciating.
We just posted an article on that very subject—compassion fatigue. Many caregivers grow to resent the people they care for but because those people are the “sick ones” there’s a lot of shame—“I shouldn’t feel this way.” But it’s so natural when you’re in a stressful and demanding role.
Well I’ve always seen myself as having a bad character! [laughs] So it’s less hard for me I have low standards—I had a bad temper and a big mouth so I spent a lot of time trying to not let it out on everyone. So with all of these feelings I had with him in one sense, it was in part okay because it didn’t make me feel guilty. What I think made me feel most guilty or most helpless which was tied together was were we doing the right thing. And how helpless I felt in helping him through it. I just felt over my head most of the time. And it wasn’t in terms of getting him to the bathroom—in one sense those mundane activities, the setting up of the hospital-patient existence, it just took the place of everything. It was one of the worst aspects of caregiving.
People who are sick are not angels. They have good days and they have a lot of bad days. It’s difficult—they’re in pain and it’s not easy for them. And the caregiver gets all of that—they get the good and a lot of those bad days. I found that a lot with cancer patients, people change and it doesn’t bring out the best in them. The treatments hurt, they feel terrible and they’re frequently scared. The caregiver is the one who winds up assimilating all of that.
What did you do for yourself during this time?
You’ve asked a very important question. What did I do for myself during this time? You know besides watching CSI as a way to cope? [laughs] I wouldn’t necessarily recommend that. It was the book [In the Valley of the Shadow: A Manual for the Left Behind]—the book was what was mine. But, you know what—I didn’t have the book then. It’s so interesting, that came after [his death]. I don’t think I could have figured it out, I didn’t have the space and this is a real problem for caregivers or at least it was for me– I could not create any sanctuary for myself, where I could just have space for me. I went to New York or I was on the road at times and that may have been the only thing I had. I had someone take care of [Fred] and I could get out. And I’ve always loved being on the road, on tour, doing things… It’s always been a space to walk out the door and be in a very different position. That may have been the only thing I could give myself.
What does it feel like to have such an honest and raw look at your life seven years ago out in the world?
At this point I feel really good about it. It’s been an interesting transformation, having gone through all of this resistance and struggle to let it go in the world. I think at this point it offers people, especially those who are suffering, something that they can potentially identify with, and know that what they’re feeling isn’t so reprehensible, it’s not so terrible, it’s okay to have these feelings, it’s okay to struggle with this. There’s no easy way through it. Everyone wants you to get better and people don’t get better, they go through [grief] for a long time. I feel it offers people a kind of anchor in the world of feeling ineffective, being unable to balance a checkbook, unable to remember things—that’s all normal. It’s part of the process. We have so few rituals to offer and allow people to actually grieve so at this point it actually feels good. A number of people who have lost [loved ones] have looked at the [book] in different stages and thanked me for it. I had a sense from them that it helped [the grief process].
Thank you so much for your honesty and talking with us. It’s so important to have these conversations and speak with someone who understands.
Yes that would have been a huge help. [Talking about the unsharable stuff] might have made a difference for me, if I knew there was a community to talk to about it all. The community around me was not ready in any way to hear such a savage sense of struggle. There’s a wall that you hit with a broader community, an inability to understand how wretched an alone you can feel [as a caregiver and a bereaved spouse].
The Caregiver Space would like to extend a special thank you to Deb Katz for her time and honesty. Thanks to Marcia Gagliardi for facilitating this interview. If you’d like to get your own copy, you can purchase it here.