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

by Jane Heller

  Jane: So people don’t want to believe their parent has dementia?

  Elizabeth: No, they don’t. They’ll move their loved one into our community and say, “You lost my mother’s dentures.” It could be that one of the other residents with dementia wandered into the apartment and flushed them down the toilet. That happened. The toilet was overflowing and we called maintenance and they said, “We found someone’s uppers.”

  Jane: I’m trying and failing not to laugh at that.

  Elizabeth: You have to have a sense of humor about the denial. I once went to the home of a highly respected surgeon, because his family asked me to do an assessment. They said, “We think he might need assisted living.” Mind you, they’d told me he’d gotten in the car and driven to another state and that law enforcement had to get him and bring him back. I was there for the interview and he said, “Have you met my wife?” I said, “No, I haven’t had the pleasure.” I knew that his wife was dead, but I went with it. He said, “Oh, here she is now.” This black cat walks into the room. I said to the cat, “It’s very nice to meet you.” I thought, this family isn’t sure if he needs assisted living? The black cat was kind of a defining moment for them.

  Jane: What would help ease the transition for family members?

  Elizabeth: I really think that things would go more easily if they had more educational support. I was sitting with a resident recently. She said, “I’ve been here about two years and I like it. However, when I moved in, my children decided what I should have in the apartment. They sent along twelve crystal goblets that I’ve never used, but they didn’t send along the photos I loved.” The move wasn’t empowering for her because she didn’t get to choose her own things. Even if there’s trepidation about moving a parent in, family members need to let him or her be part of the process.

  Jane: Any other advice?

  Elizabeth: The best advice I can give is to get their parents or grandparents in before they are too far along in their decline cognitively, so they can adjust to the environment, make friends, jell. Don’t wait for the crisis. Don’t wait until you’re at the end of your rope. Don’t wait for the black cat moment. And stop being afraid that it’ll happen to you next.

  CHAPTER 15

  Finding a Shoulder—or Ten—to Lean On

  --------------

  “We don’t have family. We don’t have community. It’s lonely out there. Create a family of other caregivers.”

  —NEAL MAZER, psychiatrist

  In the early years of my marriage to Michael, it seemed that everyone with a disease or a condition or a syndrome was joining a support group. He asked his gastroenterologist if he should go to a group for Crohn’s and the doctor said, “Don’t bother. Nobody wants to sit in a room and talk about their bowels. Too embarrassing.”

  Michael gave up on the idea until he saw an announcement for a Crohn’s support group in our local newspaper.

  “I think I’ll go,” he said. “Do you want to come?”

  “Me?” I had zero interest. My mother believed that sharing medical stories (or problems of any kind, for that matter) with anyone other than family and close friends was unseemly, that it carried the whiff of complaining; that it was best to put on a brave face and give the world the impression that everything was fine. Besides, why would I want to spend any more time dwelling on Michael’s Crohn’s than I absolutely had to? “No thanks,” I said. “But I think it’ll be great for you to go.”

  Michael went to the support group and continued to go one night a month for a year. Since he had Crohn’s the longest of anyone there, he became the group’s leader and ended up giving more support than he got. He felt good about helping others, particularly those who had just been diagnosed and had no idea what to expect. They thought their lives were over, but Michael was living proof that they could have careers, marriages, whatever they wanted.

  His most poignant interaction was with a thirteen-year-old girl who came to the group with her mother. The girl was suicidal, a complete mess. Why? Because her teacher at school wouldn’t let her go to the bathroom during class and she would soil herself as a result, not to mention get routinely teased by the other kids.

  Michael was so incensed on her behalf that he called the principal of her school and said, “Do you realize that what you’re doing is criminal? This child wants to commit suicide and if she does it’ll be on your watch.”

  The principal was very apologetic—she hadn’t known anything about it—and promised to rectify the situation.

  Clearly, there’s value in attending a support group, and as a caregiver I should have understood that. But every time I thought about reaching out to others, I said, “I’m too busy. I don’t need to swap sob stories. I’ll feel better when Michael feels better.”

  Now I get it, thanks to the people I’ve met through this book, some of whom experienced the benefits of support groups firsthand, like Cecilia Johnston, Cissy Ross, Diane Sylvester, and Jackie Walsh, who met because they each had a parent living at the Samarkand community. They bonded and formed a support group with several other women that they call “The Daughters of Samarkand,” and the group has evolved into one of enduring friendship. (Other caregivers take note: That “daughter” you keep running into at your parent’s new home just might become your BFF.) Here’s how they found support from one another:

  Jackie: “I was getting ready to leave after a visit with my mother. As I turned the corner where the elevators are, I saw a woman named Angie sitting on a bench crying her heart out. I sat down and put my arm around her. One thing led to another and we ended up laughing. The director walked by and said, ‘Is everything okay?’ All we could do was sit there and laugh and cry at the same time. We said how much we had enjoyed our encounter and being able to laugh about the sad things. The director said, ‘There used to be a family group. Would you two like to see it started again?’ We said absolutely. She put the chaplain in charge and we started the group.”

  Cecilia: “The chaplain arranged for our meetings, but we would still meet even if she couldn’t be there. And once a month we would have a luncheon with our moms in one of the private dining rooms.”

  Diane: “We’re super-duper best friends who don’t feel obligated to have to keep in touch every second.”

  Jackie: “If one of us saw something that we did not like, we were not shy about addressing it. If we said there should be little vases of flowers on the table at lunch or cloth napkins to make the atmosphere more cheerful, we were listened to.”

  Cecilia: “And if there was an aide that did something we didn’t like, we’d share the information with each other and then usually one of us or a couple of us would go and talk to whoever was in charge. We didn’t want to be a problem. We wanted to be the solution.”

  Cissy: “It’s a very profound experience to be running your parent’s life, so being part of ‘The Daughters’ was important to me. In addition to liking them, I liked their mothers. I would have gone crazy without the others. It just made it like normal life instead of some abyss.”

  Cecilia: “And there’s a comfort that somebody else knows your mom, can pop in on her, make sure everything’s okay, and report back.”

  Jackie: “My husband was extremely supportive, but having a parent in a facility isn’t something you want to go home and talk about every evening. With ‘The Daughters,’ we could talk about it every day and we’re still talking about it. So I think it was good for our marriages to have ‘The Daughters.’ ”

  And “The Daughters” are not alone in their praise of sharing.

  Victor Garber: “My brother, who was caring for my father while I was caring for my mother, went to a support group and he said it was life changing. When you go to a program where you hear another person’s story and it resonates with you, you just feel less alone and helpless.”

  Michael Lindenmayer: “When you have other people who are going through what you’re going through, you can laugh together and say, ‘Oh my gosh, this is j
ust so absurd.’ Most caregivers curl up in an isolated cocoon, cut off from the planet. But if you outreach, you’ll meet other everyday angels or heroes who are really loving and caring, and it’ll be amazing.”

  Karen Prince: “I recommend support groups highly. Even after Andy’s death, I’m still a member of the stroke support group. At first I wasn’t happy about going; I used to take those two hours and read somewhere by myself. But going to the group was the best thing I ever did.”

  Alternative-medicine practitioner Martha Rolls Collins believes there are health benefits to attending a support group:

  “If caregivers don’t have somebody to talk to, if they’re not keeping a journal, if they’re not getting the words out of their body, the stress is going to be stored energetically and it’s going to affect their breathing patterns and their body posture and their ability to function. They’ll get flooded with the emotional experience of what’s happening and there will be health consequences. So they need to join a support group—just to be able to verbalize out loud to other people who are having an experience similar enough to theirs that they won’t feel judged. Then the emotion gets processed instead of being stored.”

  Psychiatrist Neal Mazer agrees that support groups are important for a caregiver’s well-being, but adds that we should do more than vent.

  “Support groups have to begin by being places where you can dump your pain,” he said. “But once that’s done, you’ve got to move on and say, ‘Okay, what skills do I need? How do I take the next step?’ It’s about developing your strength. It’s about crying and saying, ‘Why me,’ and then moving quickly into growth and saying, ‘What am I learning?’ ”

  What I’ve learned is that my mother was right about many things when I was growing up, but she was wrong about keeping problems to myself; that there’s a great deal to be gained by revealing that my world is not perfect.

  CHAPTER 16

  “Caregiver Sleep” Doesn’t Have to Be an Oxymoron

  --------------

  “During sleep your body stops pumping out Cortisol, the stress hormone, so it gets some relief, which is why a good night’s sleep is so important for good health.”

  —NANCY KALISH, certified health coach

  Sleep is a beautiful thing. I love everything about it—from slipping between clean, cool sheets to sinking into a state of complete restfulness. I love reading myself to sleep. I love reaching up to turn out the light. I love the moments in the dark just before drifting off. I love dreaming. Come to think of it, there’s nothing I don’t love about sleep except that I have such trouble doing it.

  I’d never been a great sleeper under the best of circumstances, and menopause turned me into a card-carrying insomniac. But throw a sick husband into the mix? Forget about it. Whenever Michael was in the hospital, there was almost no point in going to bed at all. I’d obsess about everything that could conceivably go wrong with him. I’d run through the list of all the tasks I had to accomplish the next day. I’d beat myself up for being the sort of hyper person who couldn’t just roll over and nod off.

  A glass of wine would make me drowsy enough to get to sleep, but I couldn’t stay asleep. By two a.m., I was wide awake, heart pounding, looking over at the empty space in the bed next to me, wondering if everything was okay at the hospital, feeling an overwhelming sense of anxiety and loneliness.

  I’d change positions, prop myself up with another pillow, try thinking happy, relaxing thoughts. I’d turn on the light and dive back into the book I was reading. I’d watch some television. Nothing worked. By morning I’d be a disaster, walking into walls and feeling like a slug.

  “Get a prescription for Ambien,” said a friend.

  I got a prescription for Ambien. It knocked me out for three hours, tops, and gave me a gnarly hangover.

  “Try Benadryl,” said another friend.

  I tried Benadryl, as well as Tylenol PM and Advil PM and every other PM on the market, along with Nyquil. They did help me sleep but they also sucked all the moisture out of my head and gave me a case of cotton-ball brain.

  “How about a prescription for Valium?” a third friend chimed in. “Or maybe Xanax.”

  I was already a Xanax aficionado; a doctor had prescribed it years ago when I was about to appear on the Today show to promote my first novel. As a former publicist at several New York publishing houses, I was more accustomed to remaining behind the scenes, promoting other writers, than to being in the limelight myself. But now I’d written a book and it was my turn in front of the camera, and I was so freaked out that I took two Xanaxes before I went on the air instead of one. When the segment began, Katie Couric said, “So, Jane, how does it feel going from being a promoter of authors to being an author yourself?” I felt my eyes roll back in my head and I said, “I don’t know. I’m heavily sedated.” Katie laughed and the interview continued, but I cringe every time I relive that day (even though the story has gotten a lot of mileage on the author-speaking circuit).

  The point is, I knew that Xanax was short acting and, therefore, not strong enough for a full night’s sleep—not for me, anyway. And Valium? By that time, I was so not interested in becoming a pill junkie.

  I did hit on one solution while I was flipping through a Brookstone catalog. I spotted an ad for a white-noise machine called Tranquil Moments Sleep Sound Therapy and bought the machine on the spot. It comes with twelve sounds—from “rain” to “ocean surf.” The digital recordings play over and over again and are intended to lull you into a state of relaxation that leads to sleep. I’m sure that most people use machines like mine to block out disturbing noise. (I live in the hills of Santa Barbara; the only “noise” I hear is dead silence.) But I’ve found that “ocean surf” does relax me. It even makes me drowsy and I recommend it to my fellow caregivers-insomniacs. Does it work on those nights when my mind is really racing and I’m convinced a sumo wrestler is standing on my chest? No.

  Luckily, certified health coach Nancy Kalish shared her advice for eliminating those endless, torturous hours of tossing and turning. I’ve tried all her suggestions and they’re extremely effective. The one I find foolproof is No. 5, although I use a heating pad instead of a hot-water bottle. The sensation of the heat on my belly has a truly soporific effect and I go right to sleep—a blessing.

  NANCY KALISH’S SLEEP TIPS

  --------------

  ∗ Resist the urge to do any napping during the day. Sometimes people grab catnaps, but that really cannibalizes your sleep; very few of us can get away with anything longer than a twenty-minute nap during the day and actually go to sleep at night.

  ∗ Remove yourself from all sources of light. That means the computer screen and the TV screen, as well as lamps. Light prevents the release of melatonin, the hormone that allows you to fall asleep. Studies have shown that even nightlights keep you up.

  ∗ Go outside during the day. Your first morning exposure to sunlight is key to your sleep later that evening because it resets your body clock to normalize your function. If you’re inside all the time because you have to take care of someone, you are wreaking havoc on your body clock. Even if you can’t get out during most of the day, it’s really important to get out first thing in the morning—for even fifteen or twenty minutes—if you want to sleep well that night.

  ∗ Invest in a sleep mask for your eyes. If you live in an area—say, a large city—where there’s a lot of light coming in through your windows, a sleep mask makes you feel almost like you’re in your own little isolation tank.

  ∗ Get an old-fashioned, red rubber-designed hot-water bottle. I know it sounds really retro and silly, but I use one and it really does work. A heating pad is okay too, but the hot-water bottle is even lower tech and easier to use—no cords or plugs—and it’s only about fourteen dollars at the local drug store. Just fill it up with really hot water and place it on your stomach. It calms you down. It helps with digestion. It soothes you into sleep.

  ∗ Spray your pillow with a lavender
oil spray. It won’t put you into a dead sleep right away, but it has a very relaxing effect. You could also try an herb pillow, which is like a sachet but filled with herbs, the primary one of which is lavender. Having the lavender on your bed is better than bathing in it, because the scent won’t dissipate and you want it near your nose when you go to sleep.

  ∗ Count backward from one hundred. This one is really tried and true if your mind is racing with a zillion thoughts. It’s a variation on counting sheep. It calms your breathing but also quiets your mind and gets your brainwaves to stop spiking. You can’t obsess about what you have to do the next day if you’re focused on counting. And if you lose your place, you just go back to wherever you thought your place was, so there’s no fretting.

  CHAPTER 17

  The Great Escape—Taking a Mental Vacation

  --------------

  “Any time you can get to escape will refresh you. It really helps you keep your mental and emotional balance.”

  —TINA B. TESSINA, psychotherapist

  The other night—just after a friend called and asked, “How is everything?” and I said, “Fine”—Michael informed me that he needed to go to the emergency room.

  “What now?” I said with a combination of concern and resignation. It was, of course, the July Fourth weekend. Why should there be a holiday without a trip to the ER?

  “My toe is infected,” he said, showing me the offending digit, which was red and swollen.

  Since my husband now has peripheral neuropathy on top of his Crohn’s (he can’t feel his fingers and toes), he’s not supposed to go barefoot; if he bumps a toe on the leg of a chair he won’t feel it, and a bruise or break could turn into an infection. The upshot is that he didn’t listen to the doctor, and the result was yet another anxious holiday weekend instead of one spent frolicking with non-sick humans.