by Jane Heller
Michael came with me to my ob-gyn’s office to discuss the surgery in more detail. The appointment was a revelation. I sat back in my chair while it was he who asked the questions, who made sure we understood every aspect of what would happen to me, who spoke with authority.
“You were really good in there,” I told him on our drive home.
“What did you expect?”
What did I expect? He and I had been so deeply defined by our past roles that it was hard for me to imagine us swapping them, and yet he was ready and willing to do just that.
Being in the hospital postsurgery was no fun, and I couldn’t wait for Michael to come each day. But I had to laugh when he said after falling asleep in the chair one afternoon, “I had no idea this was so tiring.”
“What is?” I said.
“You know. This.”
“Having to visit someone in the hospital every day? Worrying about them constantly? Not having them at home? That kind of thing?”
He nodded wearily.
I reached for his hand, feeling a new kinship with him, a deeper connection. I understood better what it was like to be stuck in a hospital, and he understood better what it was like to be the one schlepping back and forth.
Once I was home from the hospital, Michael shopped, cooked, filled my prescriptions, rearranged the pantry so I wouldn’t have to lift or reach for anything, and read me to sleep at night from one of his sailing books. He was such a kind, loving caregiver. No, he wasn’t required to do the type of long-term caregiving that many of us have done, but there was no question that he was willing to do whatever I needed whenever I needed it.
I asked him how it was for him to switch places with me.
Jane: Did it feel weird to serve as my advocate after all these years?
Michael: It was definitely a new thing for me. Fortunately, your doctor treated me as an equal. She would look at you and look at me and answer my questions as well as yours. I felt totally included.
Jane: You opted to have a friend sit with you in the waiting room while I was in surgery. Was it helpful to have her there?
Michael: Yes. It’s a really long time to sit there by yourself. Time slows down to a crawl during something like that and your mind can run away. It’s a lot better to have someone there with you to take your mind off thinking “Oh, God. What’s taking so long?” It makes you less anxious.
Jane: You seemed surprised that it was so tiring to go back and forth to the hospital to visit me.
Michael: It was very tiring. It’s difficult to see someone you love in pain. And there’s only so much you can do to pass the time. It’s boring and it’s frightening and it’s so difficult to relax in a hospital. It’s exhausting for the patient and the caregiver.
Jane: So you were thrilled to get out of there every night. Admit it.
Michael: No, I thought it would be good for you to get some sleep. And I wasn’t looking forward to going home to an empty house.
Jane: Was that part hard—to go home alone?
Michael: It was eerily quiet. You go home and there’s no one there. It’s very jarring. I knew how difficult it would be, so I made up a big batch of spaghetti sauce beforehand so all I would have to do is pop it in the microwave. I felt incredibly prepared because of all the work you’d done for me over the years. I knew what the pitfalls were, what to expect.
Jane: You did a great job of taking care of me once I came home.
Michael: I’m glad. I know what it’s like after you come home from the hospital. It’s thrilling and then there’s this huge letdown. The fatigue really hits you—not only because you’re recovering but also because you haven’t slept for days. And I know how slow the recovery seems for the patient. The first day there’s so much to do that you’re on autopilot. But starting with Day 2 through Day 30 it’s very difficult. The patient doesn’t feel like the recovery is going as fast as they hoped.
Jane: You had more empathy for me because you’ve been a patient?
Michael: I certainly hope so. It must be really difficult for the first-time caregiver to know what to do during that period, particularly after surgery because there’s such a high incidence of complications. You don’t really know what’s normal. But I expect bumps in the road because I’ve been a patient. Your stitches pop. You get an infection. You don’t feel like eating. You lose weight. You lose strength. I tried to be prepared for that when it happened to you, so I wouldn’t get mad. I always tried to focus on what was best for you. It goes a lot easier that way. The last thing you need to do is be fighting.
Jane: If you had a choice between being a patient and being a caregiver, which would you choose?
Michael: It’s way easier to be the patient. As the patient, you kind of just lie there. When you’re the caregiver, you’re responsible for everything else: shopping, getting the right foods and medicines, cooking, helping you with everything from washing to changing bandages.
Jane: Any advice for others taking on the new role of caregiver?
Michael: The best way to make it go smoothly is to turn yourself over to the patient completely. You have to just totally think of them. And when they snap—and they’re going to—you just bite your tongue and turn your cheek. It’s a difficult time. You have to remember that they don’t feel well. They’re hurting. So just kind of be prepared that it’s going to happen. Try extra hard not to engage.
Jane: So it’s about saying, “Yes, dear?”
Michael: It’s about saying it all the time. Being a caregiver is making the situation not about you. If you make it about you, you’re going to fail—miserably.
Jane: Thank you for not failing.
Michael: You’re welcome.
CHAPTER 29
Famous Last Words
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“Get recommendations from other people who have been through it. A good caregiver is like gold.”
—TINA B. TESSINA, psychotherapist
Michael never asks for my advice. Well, hardly ever.
If we’re in the car, for example, and I’m holding a phone with a Google map right there on the screen, he won’t ask me for directions, even though we’re lost and driving around in the middle of nowhere and late for whatever event we’re supposed to be attending. (And don’t even get him started on GPS. He doesn’t believe in it. He thinks people should just know how to get places.)
I, on the other hand, am a big asker—“the grand inquisitor,” he calls me. I don’t sit around trying to figure everything out myself. I solicit words of wisdom from people I respect. I’m receptive to suggestions. I acknowledge that there are experts in areas about which I know nothing or only a little something.
When it comes to the subject of caregiving, who better to go to for advice than other caregivers?
In this final chapter, I’ve asked members of our roundtable, along with the pros who have talked to us about caregiving, if they’d like to serve up any tips or snippets of information they haven’t already shared in other chapters. I hope their advice will be useful to those who, like me, are open to anything that will make the journey easier.
Yudi Bennett: “Talk about death with the person you’re caring for before it’s too late. In the three years that Bob was sick, we never discussed it and I fault myself for that. And don’t say after someone dies, ‘Oh, don’t worry. It’ll get better with time.’ For me it’s more painful as the years go by. What people can say instead is, ‘I’m here if you want to talk about it.’ That works with special-needs kids too. We’re here for each other. If one of my friends is having a problem with her kid, she can call me and we can talk about it. And if I’m busy, I have friends who offer to pick up my kid at school. That’s what you need: actions.”
Barbara Blank: “Be philosophical and remind yourself that there is light at the end of the tunnel. And express your feelings to your good friends—as many of them as you have—so you don’t dump it all on one friend.”
Harriet Brown: “There was a lot of
pressure from friends and doctors for self-care. I wanted people to stop telling me to go get a manicure, as if that would make me feel better. Just as everybody grieves in their own way, I think everybody copes with this kind of thing in their own way. As a grownup, I wanted to have the autonomy to do it my way.”
Jennifer DuBois: “Once you get that diagnosis, life as you know it changes. You just can’t do all the things that you used to do. You have to prioritize and let everything else go. And get help. If you can’t hire someone, lean on friends. And pay it forward in some way by helping somebody else. We’re all going to go through the loss of a parent at some point.”
Victor Garber: “If you have a loved one with Alzheimer’s, make them feel like they’re still contributing. I remember when I was moving from one rental house to another rental house. I had my mother with me for the day and I said, ‘Mom, I need your help.’ Her whole demeanor changed—literally. I thought, this is a real clue. I sat my mom on the bed and I would take clothes out of the closet and say, ‘Should I keep this or should I give it away?’ And she would say, ‘Oh, no. You keep that!’ She was fairly advanced by then but she rallied in a way that was remarkable. She needed to feel of value.”
John Goodman: “Technology is a huge help. I would send out e-mail blasts saying, ‘Don’t send me individual e-mails. I’ll tell you what’s going on when there are developments.’ I was able to e-mail our large group of friends and family and keep them informed.”
Suzanne Mintz: “The primary goal of NFCA (National Family Caregivers Association) is to improve the quality of life and the well-being of family caregivers. The way we do that is by teaching them, building their confidence, and helping them gain capabilities so that they can function better. It’s that old line about we don’t give them fish; we teach them how to fish. We’re trying to empower them and remove barriers.
“I would like the government to implement ways that help family caregivers financially because it’s expensive and often family caregivers will use up assets caring for somebody and then it’s their turn and there’s nothing there. Our health-care system is built on an acute care model: something happens and it can be fixed. But a family caregiver is caring for somebody who has something that can’t be fixed—i.e., it doesn’t have a cure at this point in time. That requires a totally different medical approach.”
Jeanne Phillips: “Alzheimer’s is not an easy thing to talk about or think about. The idea that my mother, a woman with a fabulous intellect, has been reduced to the level she’s been reduced to is devastating. So when I receive a letter from someone who’s depressed because a family member has it, I pick up the phone and call and try to direct them toward help within their local community. There are responsibilities that go along with writing this column, and that is one of them. You don’t just let people twist in the wind. I call them and ask, ‘Can your doctor refer you to a geriatric specialist?’ I also say, ‘You’re going to need more help than you may understand now. Please contact the Alzheimer’s Association because they offer support groups and caregiving tips that can prove valuable for you.’ ”
Suzanne Preisler: “My husband, Jerome, and I used the Internet a lot with my mother’s pancreatic cancer, and it was a godsend. When you want to know about things and the doctors don’t explain them, you can find out everything. The more I found out, the more I felt in control. The other piece of advice has to do with my father. When there’s a surviving spouse, we need to be mindful that while our lives get relatively back to normal after a death, theirs don’t because their spouse is not coming back. So I call my father in the morning and ask what he ate for breakfast and I call him at night to tell him when there’s a baseball game on. Don’t forget the person that was left behind.”
John Shore: “There’s no such thing as a bad emotion. Don’t go into this thing thinking you’re supposed to be psychologically healthy and positive. Forget all that. When you have a difficult emotion, stay with it instead of dismissing it or blocking it. Ride it. Embrace it. Find out where it came from. And trust that there’s something good at the core of it.”
Diane Sylvester: “Be prepared to be sad for a long time when you lose a parent. The tears come when you least expect it.”
Jackie Walsh: “There is a feeling of loss when your parent goes. I felt like I had stopped being a caregiver, no longer doing something for someone. So now I’m tutoring Hispanic children in English, and it helps fill the emptiness.”
Psychiatrist Neal Mazer: “Find somebody else who’s taking care of somebody and trade for one day a week. You’ll be in a new experience, thinking and feeling and sensing different things. It’ll break up the monotony of every day being the same. When you’re learning about somebody else, you’re seeing things from a different perspective.”
Clinical psychologist Michael Seabaugh: “I think caregivers can really benefit from cognitive therapy, which is how your mind constructs things. ‘I’m an incompetent person.’ ‘I’m unlovable.’ ‘I’m a failure.’ ‘I can’t deal with that.’ It’s about isolating what those thoughts are and finding ways to change them. Those old things get really stirred up—especially when you’re taking care of a parent. They’re important to address because they breed lots of unnecessary resentment—‘unnecessary’ because that was then and this is now. Those thoughts will always be with you, but you can get perspective around them and process them to the point where they’re not grabbing you and constantly shaking you.”
Psychotherapist Tina B. Tessina: “Time slows down when you’re a caregiver. A person who needs care doesn’t move fast. But in that time there can be a richness of connection. Often defenses are down, so you can talk about things you couldn’t talk about before. Take advantage of the time you have and try not to be so focused on getting stuff done. That’s another reason professional caregivers can help, because having their help can get your head out of the logistics and into the connection with the person you care about.”
Health coach Nancy Kalish: “My advice is to touch each other. The power of touch is really going to help you relieve your stress, especially if you’re taking care of a spouse. There have been studies that show that touching another human being decreases all of those stress hormones. Any kind of touch is good, depending on what condition the person is in. If you’re in bed at night, for instance, hold hands before going to sleep. Or put your leg up against theirs. It’ll make you feel more attached to that person instead of feeling that he or she is a burden.”
Nancy’s tip about touch resonates strongly with me.
I had yet another skin cancer surgery on my leg and couldn’t walk while I was recovering. Michael, who was supposed to be taking his turn as my caregiver, tripped over a curb in a parking lot, fell hard onto the pavement, and suffered torn ligaments in his ankle, a cracked rib, and a sprained wrist. He limped home from the emergency room with a cast on his foot, an ACE bandage on his wrist, and a shrug that said, “No idea which of us is taking care of the other at this point.”
We laughed, albeit while wincing. “A couple of schlemiels,” my Jewish-atheist mother would have called us.
Later that night, thoroughly exhausted, we followed the ritual that began somewhere along the journey that’s been our twenty-year marriage.
The ritual is this: No matter if one or both of us feels like hell, no matter if the day has been a medical horror show, no matter if the next day promises to be even worse, Michael and I get ourselves into bed, turn off the lights, reach under the covers for each other’s hand, and hold on tightly, fingers intertwined, until we fall asleep.
Yes, we touch each other, connecting both in spite of illness and because of it.
ACKNOWLEDGMENTS
In the summer of 2010, I went to a Yankees game with Leigh Haber, the editor extraordinaire of my baseball book, Confessions of a She-Fan. I asked her what she was currently working on and she said, “I’m acquiring wellness books for Chronicle, among other projects.” Within a few weeks, she and I had hatched
the idea for this book, and throughout the process she was smart, supportive, and accessible—everything you could ask for in an editor.
My literary agent of many years, Ellen Levine, is as dear to me as family. The fact that she read this manuscript while she was staring down her own challenges as a caregiver made her even more heroic in my eyes. I’m deeply grateful that she’s in my life.
How do I even begin to thank the caregivers who spoke to me so candidly for this book? They cried with me. They laughed with me. They were superstars. A heartfelt thank-you to Yudi Bennett, Barbara Blank, Harriet Brown, Linda Dano, Jennifer DuBois, Victor Garber, John Goodman, Judy Hartnett, Deborah Hutchison, Cecilia Johnston, Michael Lindenmayer, Suzanne Mintz, Jeanne Phillips, Suzanne Preisler, Karen Prince, Cissy Ross, April Rudin, Harold Schwartz, Toni Sherman, John Shore, Diane Sylvester, and Jackie Walsh.
A big shout-out to the experts I consulted. They took time out of their busy schedules to answer even my most elementary questions. Thanks to Marci Anderson, Martin Boroson, Ilene Brenner, Martha Rolls Collins, Hannah Goodfield, Teena Grant, Heidi Holly, Kelli Jackson, Nancy Kalish, Karen Mateer, Neal Mazer, Deborah McQuade, Mikki Reilly, Elizabeth Schierer, Michael Seabaugh, Deb Shapiro, Ed Shapiro, Martha Rose Shulman, Tina B. Tessina, and Susan E. White.
My pal Laurie Burrows Grad, who chairs “A Night at Sardi’s,” an annual star-studded bash in Los Angeles that has raised millions of dollars on behalf of the Alzheimer’s Association, reached out to both Victor Garber and Jeanne Phillips for me. She’s the best.
Thanks to all the doctors and nurses who appear anonymously in many of the anecdotes in this book. Little do they know they provided me with great material.
A special thank-you to Sandy James, a “pro” in every sense of the word. She not only sees to it that my mother is healthy and happy, but she also serves as our family’s unofficial caregiver, just because she really does care.