You'd Better Not Die or I'll Kill You

by Jane Heller

  Cecilia Johnston: “I went for help pretty early on. I’m on Zoloft and I love it. To me, it’s part of taking care of yourself.”

  Harold Schwartz: “About six months to a year after my wife was diagnosed, she said, ‘I can handle Joseph, but I can’t handle Joseph and the Parkinson’s.’ She was a woman with spirit who had lost her spirit. It was depressing. I never had interest in psychology or psychiatry, but eventually I went to see a therapist and started on an antianxiety medication and an antidepressant. I took them for about a year and the medications were marvelous. I recently weaned my way off them.”

  Toni Sherman: “I was in analysis for thirty years. When my last analyst died, I was in good enough shape to not try to seek out another analyst. All the years went by. Then my daughter and I had troubles, and she and I went to a therapist together. And then my mother was dying. I called the therapist and said, ‘Would you be willing to see me alone?’ The idea of spilling my guts all over again was repulsive, but I went back to her to have somebody who would be able to talk about the difficult stuff that you can’t really talk about with your girlfriends or your children, or you feel that you can’t. And I take Zoloft. I’m not giddy with it. It doesn’t make me glide through life. What it has done for me is to keep my head above water. It’s as simple as that. My advice is to get every piece of help that you can.”

  Diane Sylvester: “I’m pretty alert to what’s going on in my body. I could tell when the intestinal things started and the migraines, so I called around and found a shrink. It was very helpful.”

  Psychotherapist Tina B. Tessina believes that caregivers, in particular, should avail themselves of therapy.

  “You need somebody who’s got some objectivity and who will let your worst self be expressed and then help you bring out your best self,” she said. “You can’t always talk yourself out of sadness or anxiety. Sometimes the fear becomes overwhelming, especially if you’re watching a parent go through Alzheimer’s and thinking, this could happen to me.”

  How can we tell the difference between sadness and depression, between a case of nerves and an outright anxiety attack, between a bad day and an inability to function?

  “Sadness is a feeling and depression is a state,” said clinical psychologist Michael Seabaugh. “You need to be aware of the difference. You need to go, ‘You know, I am drinking too much.’ Or ‘Those Vicodin pills in my parent’s medicine cabinet really numb me out.’ You look at yourself and say, ‘What am I doing? I’m getting into trouble.’ Anxiety is an important one too. Being worried about someone is different than being anxious; anxiety is a state just like depression is a state. The classic signs of anxiety are when you say to yourself, ‘I’m jittery. I startle easily and not just today but yesterday as well. My mind is always racing. I can’t sleep at night.’ Don’t wait until the situation gets worse. Get help early.”

  Alternative medicine practitioner Martha Rolls Collins sees clients whose depression and anxiety manifest as physical problems.

  “I see swollen joints, inflammatory bowel disease, palpitations, headaches, inflammation of every type,” she said.

  Psychiatrist Neal Mazer adds a few other red flags to watch for.

  “Anger is probably the biggest red flag,” he said. “Others are when you feel that you’re all alone, when there’s physical exhaustion, when there’s a lack of passion in things that used to give you joy, when it all seems hopeless.”

  Since Neal is an MD and, therefore, authorized to dispense medication, I wondered how he decides whether or not to whip out the prescription pad.

  “First, you have to establish people’s trust and then figure out what their goals and strengths are,” he said. “Medication is not a panacea, and you can’t give somebody the expectation that it is. So it’s got to be part of a process of helping to heal. Too many doctors write a script and take it to the bank. They give you an excessive dose, because they’re not going to see you for three months, and they become another person you can’t trust.”

  How are caregivers supposed to choose a therapist they can trust? Referrals from a family physician have worked for me, as have recommendations from friends. But what if someone walks into a shrink’s office cold? What are the questions to ask before deciding that particular therapist is the right one?

  “First, you should trust your own judgment,” Neal said. “If you feel uncomfortable, get out. And then think about their manner. Are they respectful? If they’re not respectful, you’re not going to respect them. And I think it’s important to ask them a bit about their own personal story.”

  Neal’s last piece of advice surprised me. I always operated under the assumption that shrinks were loath to reveal the personal details of their lives. In fact, I remember asking one of my therapists if she was married, since I didn’t see any family photos around the office, and she replied, arching her eyebrow as if I’d just asked if she was wearing underwear, “Not presently.” Now we were allowed to interrogate them?

  “Yes. Ask them questions,” he confirmed. “If they can’t share something about themselves, it’s not right. You don’t want a doctor who’s just going to give you medicine. You want someone who will remind you of your resilience. Resilience is the capacity to bounce back, with the appreciation that you’ve learned so much that you would never have learned without the hardship—that there was a reason for it all.”

  CHAPTER 25

  “Spiritual Care” Isn’t Necessarily Just for the Spiritual

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  “If you’re lucky and you happen to have a faith—a dependable sort of theology that you can turn to—this is the time to avail yourself of it.”

  —JOHN SHORE, author, blogger, and caregiver

  My mother is a Jewish atheist.

  I know that sounds contradictory, so let me explain.

  She’s Jewish because she was born that way. She celebrates Christmas instead of Chanukah, doesn’t belong to a temple, and doesn’t have the slightest urge to see Israel. I think what she likes about being Jewish is the gefilte fish my sister serves at Passover.

  She’s an atheist because she doesn’t believe there’s a God and isn’t the least bit interested in religion.

  Yet she’ll say, whenever I’m worried about Michael, “I’ll pray that everything’s all right.” I assume her “I’ll pray” is merely an expression of support, but who cares. I’ll take it. I’m just happy somebody’s on my side.

  Unlike Mom, I’m all over the map when it comes to religion and spirituality, which is to say I believe in everything.

  Do you have the name of a good psychic, astrologer, or tarot reader? I’m so there. I love having my future “predicted.” It’s the mysticism of it all that thrills me—the possibility, however unlikely, that there’s a universe filled with spirits or forces or entities that know more about me than I do.

  Is there a rabbi who’s wise and kind and can put problems into perspective? I’ll call him/her.

  Is my local Roman Catholic church holding its annual Easter Vigil? I’m sitting in one of the pews inhaling the incense and singing “Alleluia.”

  I’m open-minded when it comes to religion and spirituality because I like having the sense that I’m covering all my bases. I’m reassured that someone is always listening whenever I pray.

  And I do pray. I make deals with God, mostly when I’m on airplanes during heavy turbulence, but also when Michael is sick.

  “Please, God,” I say. “If you just get Michael through this surgery, I promise I’ll never yell at him again about leaving Kleenex in the pockets of his jeans and getting a hundred little shreds of white tissue all over the load of laundry.” So far, God has heard me because Michael is still alive and leaving Kleenex in his jeans pockets.

  Praying comforts me. It makes me feel as if I’m not alone. It allows me an outlet for expressing my fears as well as my hopes and dreams. It’s a time when I can say whatever I want and nobody will go, “You’re crazy.”

  I asked ou
r caregivers if they’ve tapped into their spirituality during their loved one’s medical crisis.

  Linda Dano: “I’m Italian Catholic, so God is always in my life. At one point, when my father was deeply into Alzheimer’s and I was so full of guilt about giving him the feeding tube, I sat in my darkened living room and said, ‘Dear God. I know I’m punishing myself. Can you please help me?’ And He answered and I mentally flipped a switch and stopped all the craziness. God keeps me afloat. I pray every day. I say, ‘God, I need you to get a hold of Frank for me.’ And I talk to my mother and my grandmother. I believe they’re all up there and they’re looking over me and helping me.”

  Cecilia Johnston: “My parents are Unitarian Universalist and I was raised the same way. What I appreciate about the chaplain at the Samarkand is that she has always been accepting of their beliefs. I actually have her phone number in my phone so that whenever my parents get hospitalized she’s one of the first people I call. She comes over and will ask if she can say a few words, and it’s comforting. I don’t know if it’s necessarily spiritual or just that she’s there and she cares and I trust her.”

  Harold Schwartz: “I have been an atheist for a long time. I was raised in a traditional Jewish household, but at age fourteen or fifteen I completely broke away and I have been an orthodox atheist ever since. I’ve never felt the need for religion. I never prayed for either my son or my wife. I had no more thought of that than I would have asked the Loch Ness monster to come and help me.”

  John Shore: “I write about Christianity for a living, but it wasn’t my faith that got me through caring for my father. There’s nothing in the Bible about having a dad you haven’t seen in twenty years who’s an asshole. I think Christians too often rely on this idea that if they’re spiritually together they have no psychological problems. My Christianity didn’t serve me any purpose other than the ways it serves me every moment. It informs my thinking. It brings me feelings of peace and I carry them with me 24/7, particularly in emotionally intense circumstances. In that sense, spirituality is everything. Faith creates a context of God. When the really big things happen you can go, ‘Okay, then there’s a reason for this.’ ”

  Jackie Walsh: “My mother was a Catholic, and I would take her to the chapel at the Samarkand every Sunday for Communion. After she passed away, I found myself continuing to go to chapel there alone. It was a source of peace and comfort to my mother and now it’s the same for me.”

  Talk about being all over the map. Clearly, there are those who derive comfort from the spiritual experience and those like Harold and my mother who think it’s worthless. But what I’ve always wondered is what hospital chaplains do to help both groups. Can they service the spiritual and the atheist when there’s a medical crisis?

  I asked the Reverend Teena Grant, a chaplain at Santa Barbara Cottage Hospital for over a decade, how she goes about her work.

  Jane: How did you become a chaplain? Were you always religious?

  Teena: I was born and raised in a Catholic family, but I got my college degree in Spanish literature. During the ’60s I explored the Eastern traditions like Transcendental Meditation. It wasn’t until my son was four that I had a moment that triggered my calling into the ministry. He had seen a dead bird the day before and he asked me why it wasn’t moving. I explained that the bird was dead. He said, “What does ‘dead’ mean?” I said, “It’s not breathing anymore. Its life is finished.” He said, “Am I going to die?” I said, “All of us die someday, but most of us live a very long time and that’s the natural thing and death is okay.” I remember thinking at that time that I had to teach him that life was good in spite of death and suffering. Eventually I went to a seminary that required all of their ministers to do a rotation in a hospital, and I fell in love with chaplaincy.

  Jane: What was it about the hospital setting that appealed to you?

  Teena: There’s a sense of realness when you’re in the hospital. You’re really close to life and people’s masks are off.

  Jane: Do people ask to see you, or do you just show up in their room?

  Teena: They can ask to see me, but I also do rounds. One of my main jobs is to address the family’s trauma—to be a non-anxious presence. Often there aren’t words you can say in crisis; things like “Oh, don’t worry” are insulting. So it’s about not abandoning people when they’re going through something horrible, so they don’t feel alone.

  Jane: So you walk into a room and do what?

  Teena: I walk in and say, “I’m Teena, one of the chaplains here.” Then I’ll kind of wait to see what comes up and go with that. I might lead people to talk about their loved one, and they’ll say beautiful things and tell stories. Or I might affirm them as a group and say they’re doing a great job of being supportive. Sometimes people want prayer, so we’ll all circle around and hold hands. Prayer is about asking for something greater than ourselves. It’s a language that comes from the deepest part of us—beyond the chatter.

  Jane: What if the people in the room aren’t religious?

  Teena: Everybody is searching for ways of coping. I’m there to help in whatever tradition they’re comfortable with. We’ll bring in music. We do healing touch—whatever helps them cope.

  Jane: What’s healing touch? Sounds very New Agey.

  Teena: It’s energy therapy. I put on relaxing music. Then I do a guided visualization to get you to be present and clear in your mind of all your worries. Then there’s the pattern of putting the hands on the body or just above the body. I start with the feet and follow the chakras all the way up to the head. It takes about a half hour.

  Jane: Chakras? Wow. Very different from what I expected from a chaplain. I’m assuming most of what you do is more “mainstream”?

  Teena: When people are in crisis they lose hope. A big part of my job is to say, “Then let me carry it for you until you can find it again.” Another part of my job is to help people find meaning in what they’re going through. Otherwise their suffering is wasted.

  Jane: What sort of “meaning”?

  Teena: Like in a dysfunctional family where they can find forgiveness. It’s such a cliché that love conquers all, but it’s really true. The devotion that people exhibit is extraordinary. Some families bring thirty people to the hospital. It’s like they’re saying, “Hard stuff is happening, but we will stand with each other until we get through this.” There was one time when the family spokesperson had to make a difficult decision about the patient and sign a document. He got up to sign the document and every single person in the family stood behind him and put their initials next to his. That was a joyous moment.

  Jane: What about after the patient dies? How do you help people who are grieving the loss of a loved one?

  Teena: Sometimes they want time alone to say what they need to say to the person who has died. I was with somebody the other day that didn’t want to be alone. He said his goodbyes, and then I walked him all the way to his car. People feel empty. They’ll say, “What do I do now? He took care of all the bills. I don’t know how to do anything for myself.” I affirm them and say, “You’d be surprised. You’re going to find strength you didn’t know you had. I saw how you handled this.”

  Jane: So the next time Michael is in the hospital—and I hope it doesn’t happen for a very long time, obviously—I’ll call and ask you to come. How would you pray for us?

  Teena: I’d say, “Loving God, I know that you’re here in this room right now with both Jane and Michael. And you know more than any of us the depth of feeling that’s in Jane’s heart right now. You know what she’s going through. You know her anxiety. We just ask that you help her right now to lift that anxiety from her, help her to find her own strength in knowing that there is a way through this time, that healing is possible. And we ask for your healing presence with Michael. Bring him what he needs right now to feel your healing presence in his mind and his body and his spirit and for Jane to feel your healing presence in her mind, body, and spirit. We ask th
at you give her the strength that she needs in the days ahead, to be patient, to wait in faith that all is being done for her husband, and in the faith that she has the strength to get through these days. In gratitude for the help of all the doctors and nurses, may they continue to do their best for her, and in gratitude for the blessings of their relationship that brings them together now with care and love and concern. Amen.”

  Me: Amen.

  CHAPTER 26

  Getting Through the Goodbye

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  “Death isn’t something to be feared. It’s just part of the life cycle.”

  —SUSAN E. WHITE, palliative care manager, Santa Barbara Cottage Hospital

  My mother has sayings—homey old saws she repeats when the occasion warrants it. They run the gamut from “A watched pot never boils” and “It could always be worse” to “Never wash your hair when you have your period.” (That last one always baffles me. Does wet hair make a woman bleed more, catch a cold, what?)

  One of her other bromides is: “Nothing lasts forever.” For this chapter, I’m putting a twist on it: “No one lasts forever.”

  We don’t last forever or even for very long in the grand scheme of things. We have life spans. We have invisible expiration dates stamped on our foreheads. We go along, as best we can, and then we peter out, and so do our loved ones.