by Jane Heller
While Susan E. White helps patients and families cope with end-of-life issues in a hospital setting, Deborah McQuade manages an eight-bedroom residence in Santa Barbara called Sarah House, which provides a home and holistic hospice care to low-income patients as well as those living with AIDS. Because Sarah House is licensed under the California Department of Social Services rather than the Department of Health, they’re able to offer a cost-effective, unique model—from providing medical care and controlling pain to having family members over for a home-cooked meal or holding a patient’s hand through a sleepless night. Deborah is one of a kind—a nun who left the convent, married three times, had eight children, and went into the restaurant business—all before finding her mission at Sarah House.
Jane: One of the amazing things you do at Sarah House is to reunite estranged family members when a resident is dying.
Deborah: We’ve seen extraordinary things happen here—like the Mormon bishop who came. His first son had already died of AIDS without him and he wasn’t about to let that happen with the second son. He would go from bedroom to bedroom to visit everyone. And I remember the man who lived in his van. He was gay and a drug user, and he was toothless and really tall and weighed like 105 pounds. He came to live at the house and hadn’t seen his dad for ten years. One day he said, “I wish I could find my dad.” We said, “Where did he work the last time you spoke to him?” He said, “In the Florida state department.” We called, and within ten minutes we had him—and it was his dad’s birthday. His dad said, “I’ll be right there.” Within two days his dad and his brother came and spent several days with him so they could say goodbye.
And I always think of the woman who was about fifty-five when she came to the house. Her mom and sister were so sick of her drug use, which had led to her illness. They had mortgaged their house to get her in programs. They were just so angry and disappointed. She came to the house and was clean and sober, so her normal, beautiful personality shined through. They walked in and saw how much we loved her and how we kept hugging her, and it made them take a second look and say, “She’s our daughter again.” I think our affection for residents whose families have written them off—though we aren’t doing it to change anybody’s mind—gives everybody a way to reassess and find the person that was important to them.
Jane: Who works at Sarah House? It must take a special person to sign on.
Deborah: It does and they’ve all been here for a long time. Nobody really leaves. And no one’s a nurse. One of our principles is: Nurses nurse and we don’t. We just don’t like the medical model. We don’t think it is, for most people, a good way to die. It doesn’t mean we’re angry that anybody is dying at some other medical model. We just do things differently. Like we’ll be having lunch and the visiting nurses will sit down and say to a resident, “Now, how did that extra Colace work for you? Did you have a good bowel movement today?” We go, “No, no. We’re sitting here talking about tuna sandwiches and Japan and being an artist.”
Jane: Is that the biggest difference between you and hospice? That you don’t talk to the patients about their medical problems?
Deborah: Our emphasis is on providing a home and community for people—from the day they walk in here until the day they die—with the backup of being sure that the medical aspects, which are largely medications, are taken care of. When our residents wake up in the morning, there’s a hug and a kiss and a back rub and we say, “What movies do you want to watch?” We know the medical things that need to be done. We largely have one hospice nurse now and she comes every day. Our advantage is that we’re a house, a home.
Jane: Since there’s such a family atmosphere at Sarah House, you must become emotionally attached to the residents. How do you deal with it when they die?
Deborah: When people move in, we do open our hearts to love them the most we possibly can. And when they die, we’re devastated. We have staff meetings every week and a lot of times we sit and read names and light the candles and sob. But we do it together, so our grief is broken up and supported. And if I feel a little depressed and stressed, I get some hand cream and sit down with somebody stretched out on the couch and rub their feet. By the time I’m done I feel just great.
Jane: How does Sarah House make it easier for patients and their families to handle death?
Deborah: One of the ways is to do a home wake. There’s a book out called Grave Matters, and it takes you through the process. After someone dies and the family doesn’t know what to do, we put on coffee and tea and they cry and we rub their backs and then we say, “If it’s okay with you, we’d like to bathe Mom’s body with some herbs in a ritual bathing. Then we’ll put on whatever you’d like to pick out for her to wear and if you’d like to help us let us know.”
Jane: Do most of the families agree to the home wake?
Deborah: Almost everybody says, “That would be wonderful.” Remember that since most people here are cremated because they’re low-income, this is the viewing day.
Jane: So what happens next?
Deborah: We bathe their bodies and put on clean clothes. We change the linens and get rid of all the medical stuff. We bring out candles. We sometimes put on music. We put out lots of flowers. And then everybody comes back in and we say some prayers. Then we start making food. Eventually, the mortuary is called. I ask people, “Would you like to put the white linen shroud on your mom and help your mom onto the cart?” And they usually end up doing that. They lift their mom on the cart and cover it with the blue velveteen. As the body goes out, we’ll grab some candles and we all walk out behind the family. And that’s how the day goes. The chapter in Grave Matters talks about how to work this out in your home. There are only a few states that don’t allow it. Your friends can come and you can do everything that I just said. You can display pictures and read poems and play a little music with a flute. I just think it’s beautiful and comforting and a way not to feel helpless.
Jane: Do you have any greater insight into death now than you did when you started working at Sarah House?
Deborah: I’ve learned what it means to listen to the dying and how to be with silence. My mom died last May. I’m still not over her death and I don’t want to be over it. I drive down to the cemetery once a month and put flowers there. I might not have done that if I hadn’t been here. The loss of a mother is a really big thing. My work made my mom’s death a richer experience. But in general, I think people should read more about death and dying. It’s a topic that’s coming into its own.
CHAPTER 27
Yes, There Are Silver Linings
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“It’s really important to acknowledge, ‘This is not the dream I had,’ because dreams are key. But there’s more than one dream.”
—NEAL MAZER, psychiatrist
I know I’ve referenced my mother a lot in this book, and I’m about to do it again.
Another one of her adages, whenever something off-the-charts bad happens, is this: “Out of every evil comes good.”
“Really?” I’d always say.
“Yes, dear,” she’d always reply. “You’ll see.”
For the longest time I didn’t see. While I thought it was noble and brave and incredibly sunny-side-up for people like Michael J. Fox to announce that they were grateful for their illnesses, I didn’t buy it. Who would want Parkinson’s disease, given the choice? Who would title their book about their Parkinson’s Lucky Man? What was the good that came out of that evil? Okay, I could buy that there were some goods that came out of it, but lucky?
And then Michael’s illness forced me to rethink my mother’s homily. Maybe there were silver linings to having a husband with a chronic illness and I just hadn’t taken the time to figure out what they were. And maybe if I did light on them, I’d stop wishing that he didn’t have Crohn’s, that things could be the way they were when we first met, that I could let go of what might have been and finally accept what is.
I asked my caregivers if they’ve
been able to find silver linings, moments of joy, good out of evil, during the challenges they’ve faced.
Yudi Bennett: “I definitely learned to be a kinder, gentler person as a result of having a kid with special needs. And Noah has made such incredible progress. When you live with somebody you don’t always see progress, but then came his bar mitzvah. My family flew in from all over the world. They were astounded. The boy gets up and reads from the Torah and gives a speech and goes to parties with his friends! At first I was heartbroken as I sat there watching him—heartbroken that Bob wasn’t there to see it. But what I said in my speech that day is that Noah’s full name is Noah Ephraim Schneider and that his initials in Hebrew spell the word nes, which means miracle. I consider Noah to be my miracle. I remember thinking when he was diagnosed that he would probably never have a bar mitzvah. And there he was. There wasn’t a dry eye in the place.”
Barbara Blank: “My silver lining is that when the end finally comes for my father, I will have peace in knowing that I did everything I could to make his situation as good as it could be under the circumstances. I think you have to be able to live with yourself and not have regrets. I feel good about that.”
Harriet Brown: “I really learned to value my husband’s strengths a lot more. I had valued them before, but I’m a quick person and he’s a slower person. I’m more impatient and he’s more methodical. I’ll give you an instant reaction to something and he’ll mull it over for a while. We just operate very differently and there were definitely times in the marriage when I would get frustrated with that and say, ‘Come on. Can’t you just tell me what you think about this?’ I thought my way was the good way and his way was a little lacking. The experience with our daughter proved to me that I was dead wrong. Each of our personalities and approaches worked well sometimes and didn’t work well at other times. Dealing with a child’s eating disorder has been a long haul and it’s still going on. I’m very grateful to be with a partner who’s more patient than I am and can be steady at times when I’m just wigging out.”
Linda Dano: “The silver lining is that I have more of a reverence of God and His plan for all of us. I believe there is an afterlife. I believe that I’m going to see my whole family and that my husband will come for me. Another silver lining is that I’m able to sit and look at the flowers and the gardens and play with the dogs now. I never did any of that. I’ve reached that point where life is very precious and very beautiful. I like being slowed down. If you’d said that to me ten years ago, I would have said you were crazy. And I have greater compassion for others now. I remember going to mass one day and lighting candles for all the people I have known in my life that committed suicide. I offered up an apology to them because I never knew that kind of pain and despair until I lost Frank. I totally got it.”
Jennifer DuBois: “I learned to appreciate the simple things—the times I spent with my mother—so much more. Whenever she felt good in between chemo treatments we’d go shopping or we’d go with my dad to Key West for a weekend. Those were things she loved to do, so we really tried to make sure that we continued to do them. We had some really good times and I treasure them. And certainly my friendships with my girlfriends deepened because they really were supportive of me.”
Victor Garber: “My relationship with my mother over the years was close but stormy. She was very narcissistic, draining, needy, played into all my weaknesses, which were to take care of her and to make her better. What I actually found when she got ill and became the child was that I forgave her for the bad mothering that I’d been focused on. It completely dissolved. I just felt this unconditional love for her, and I was so grateful for that. And a couple of years after she died I missed those good days that we had together where we would laugh and she would be so sweet and completely adorable.
“It’s strange to say I miss the times when she was ill, but I got great joy and comfort from her on those good days. And I learned something about her: she really was a very sweet, kind, caring person. The first time the caregivers would come, I’d call her and say, ‘How was that lady today?’ and she’d say, ‘You know, dear, she has a lot of problems.’ She was so concerned about people. And she was so popular at Belmont Village. She was nice to everybody. She was nice to the staff. She wasn’t demanding. I found that very gratifying.”
John Goodman: “There are a lot of post-Cushing’s days where my wife will hug me or kiss me and say, ‘I can’t believe what you did,’ and ‘I can’t believe how you got through it.’ I think the crisis brought us closer. She knows that when the going got rough, I was there.”
Judy Hartnett: “I’ve never felt that I took the easy path or led a ‘normal’ life. You have to be pretty wacky to even be attracted to somebody with four children. What I found out is that I can handle a lot—and that Paul absolutely appreciates that. There’s a lot of ‘awful closeness’ between us and it’s very real. You can’t fake it. You can’t pretend it. You can’t do it for anyone else.”
Cecilia Johnston: “I’m not as afraid of dealing with the decline of my parents anymore. I also know how to set things up so that my kids don’t have to go through what some of my friends have had to go through. And I’ve become somewhat of an expert in the area of elder care, so I get a lot of phone calls from friends whose parents are declining and it gives me pleasure to be able to help them.”
Michael Lindenmayer: “The silver lining is that my family is stronger than it’s ever been. We were at a breaking point. I really thought my father would have a heart attack and my mom would go into a state of chronic depression and my grandpa would die a bitter, angry man. That was the road map. But it didn’t happen that way at all.”
Suzanne Mintz: “You learn a whole lot about yourself and recognize strengths you didn’t know you had. You tend to become a more compassionate person. You meet some wonderful people. You and the person you’re caring for may grow closer; it’s not always the case, but it’s great when that happens. So there are definitively positive aspects.”
Jeanne Phillips: “My silver lining is that I could communicate with my mother through music. She and I used to sing duets on special occasions and at family parties—usually old songs by the Andrews Sisters. We harmonized very well. We continued singing with each other even as she got sick. I remember when I went to see her in Minneapolis, and she didn’t recognize me. I started singing to her. It was the song ‘I’m Gonna Sit Right Down and Write Myself a Letter,’ which had been Mom’s theme song. If she was someplace where there was a piano bar, they’d start playing it for her. So I sang it to her. I went through it once and there was no reaction. I sang it again and there was a glimmer. And the third time she chimed in with me. She no longer knew the lyrics but her harmony was perfect. And when I hit a flat note, she gave me a dirty look!”
Suzanne Preisler: “I think I learned how to be a better friend. When my mother was sick, I didn’t want to hear, ‘She’ll be fine.’ And when she died, I didn’t want to hear, ‘Well, she had a good life.’ I would have been the first person to say those stupid things to someone else, but when you go through it, you realize it doesn’t help when you say those things.
“Also, my husband, Jerome, was wonderful and I felt like we went through it together. He would research everything and talk to the doctors if he saw I just couldn’t take another phone call. I have to say that the situations with my mother and my sister were the best and the worst times of my life. I pampered them when they were in the hospital. I made sure their hair looked nice. I did their nails. I’d bring in sweaters so they could just throw them over their shoulders. It was a closeness on a level that you cannot experience from going to dinner or going shopping or having a heart-to-heart in a normal situation—a closeness that I really treasure. Another silver lining is that you learn to take your time—like with my father now. When he repeats his stories for the fiftieth time, I relish it instead of tapping my feet and thinking I can’t hear the same story again. And when he walks a little slower, I see a be
auty in it. I appreciate those things all the more.”
Karen Prince: “I’m stronger than I thought I was, in the sense of being able to do things that I didn’t think I could do. I was not the strong one in the family before Andy’s stroke. He was always the outgoing one, the go-getter. Now I had to take on that role, and I did it. Like moving us across the country to California.
“I still don’t know how I got rid of most of the things in the house, put the house on the market, and sold it. And then how we got to California was pretty comical. We showed up at the airport with a wheelchair, two cats in their crates, and about four bags. And once we arrived, I had no idea where we were going to live. I found us a motel room, got a newspaper, started circling ads, and found us a place that met my criteria. So I learned about myself. And I learned that Andy and I were able to keep it together despite everything. Marriages can break up over these kinds of things. Nevertheless, I felt that that’s what the marriage vows were all about.”
April Rudin: “Taking care of my grandmother did a lot for me. Number one, it was satisfying to see that my sister and I could develop into the kind of caregivers that my grandmother was to us when we needed her. Also, it was great for my kids to see me dedicated to my grandmother. They were very proud of me.”
Harold Schwartz: “I got to see how amazing my son Joseph was. He always looked forward to something, in spite of the ALS. He had this great computer—the same type of software that Stephen Hawking has. He had gotten to a point where he could no longer use his hands, but he had something like an eyeglass frame wired to the computer with a thing that came near his cheek. By blinking his eyes, his cheek motions would control preset letters, words, and phrases. He would painstakingly type and a voice would speak out what he’d written.