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

by Jane Heller

  Suzanne Preisler: “My sister and I did floral arrangements for years, even while she was getting treatment for ovarian cancer. There were times when some of the drugs she was taking gave her short-term memory loss so I would say, ‘Could you cut these flowers this way?’ And she’d say, ‘Sure.’ Two seconds later she’d say, ‘What would you like me to do?’ Once she finished the chemo and started to get back to normal, she just put the cancer in her rearview mirror and moved on, and we continued to work together.”

  For those of us in creative fields, “work” can evolve into projects having to do with caregiving. Harriet Brown turned her daughter’s struggle with anorexia and her family’s strategy for treating the illness into a moving and extremely instructive book.

  “I kept an extensive journal,” she said. “I’d go down to my office at the end of the day or sometimes during the day and just write down everything I could remember. I knew that someday I would want a record of it, and it really was cathartic.”

  Suzanne Mintz and Michael Lindenmayer both used their experiences as caregivers to launch national organizations that benefit other caregivers.

  Linda Dano became the national spokesperson for the “Caregiver’s Survival Initiative” program sponsored by Novartis on behalf of their Alzheimer’s drug, Exelon.

  “The stats are just extraordinary about how many care-givers also die in this process because it’s just the hardest job on the planet,” she said. “I really believe I helped people with that campaign, and in doing so I helped myself.”

  And now, with this book, I’ve found a way to write about my adventures with Michael—but not before asking him if it was okay to use him “for material.” He laughed and said, “You’ve been doing it for years. What else is new?”

  CHAPTER 13

  The Home Health-Care Invasion

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  “It’s really important to get as much home care as you possibly can for your loved ones, because that frees you up to have a relationship with them and that’s the most important thing.”

  —TINA B. TESSINA, psychotherapist

  Let me begin this chapter by stating unequivocally that I am extremely grateful to the conga line of nurses who came to my house daily to care for Michael after his most recent surgeries. They changed the dressing on his open, gaping, thoroughly nauseating-looking wound (I referred to this daily ritual as stuffing a turkey), checked his vital signs, made sure there was no infection, and performed their duties professionally. Well, except for the one who was hard of hearing and not only spoke in a really loud voice but couldn’t tell if he was saying “pain” or “vein.”

  While I valued the expertise of the home health-care workers who were sent by the surgeon to care for Michael and I appreciated the fact that they were the ones poking around in his guts, not me, their visits were, in a word, disruptive. We live in a small house. My office sits right next to the bathroom we had converted into Michael’s “infirmary.” I couldn’t get any writing done while they were conducting their business, which could be any time of day, depending on their schedules. I’d sit at my desk trying to concentrate, but inevitably I’d hear their conversations and roll my eyes in frustration. Once, I put on Bose headphones to block out the noise, but I was so afraid I might be needed and miss a call for help that I took them off after about six seconds.

  Having strangers in your home, no matter how well meaning they are, can add to a caregiver’s stress even as it relieves it. I’m sorry if that sounds paradoxical, but it’s true. Hospice workers are a whole different ballgame, as are those who help with lifting, bathing, and feeding loved ones. I don’t know a single caregiver who doesn’t view them as angels.

  In my case, those who came to our house were both angels and invaders.

  One nurse wore so much perfume that I had to open all the doors and windows to fumigate the place the minute she left. I was surprised by her lack of sensitivity in this regard; even hospital volunteers are taught not to wear fragrances because they can make patients sick.

  Another nurse was a closet smoker. No, she didn’t sneak outside to have a cigarette, but she reeked of tobacco and had both a heavy cough and teeth the color of tree bark.

  Oh, and then there was the one who suffered from panic attacks. We live up in the hills and our steep, winding road must have triggered her fear of heights. She’d make it all the way up to the house, but spend the first ten minutes of her visit sitting in a chair hyperventilating.

  The best nurse was the hard-of-hearing one. She showed up when she said she would and had a kindly, maternal manner. There was just her loud voice, which grew into an actual shriek during one very memorable visit.

  I was sitting at my desk, making an effort to write at least a page or two, when I heard this: “Oh my God!”

  “What’s going on?” I called out.

  “Come quick!” she cried. “It looks like a tennis ball!”

  A tennis ball?

  I leapt out of my chair and ran to Michael. He was standing up, his bandages off, looking pale and shaken. The nurse was freaking out and could hardly speak. She motioned me closer, pointed to Michael’s incision, and said apoplectically, “I don’t know what that is!” She was so shaken up I couldn’t decide whether to hug her or slap her.

  I peered at Michael’s belly and, sure enough, there was a round pink object protruding from his wound. Since the nurse was still speechless, Michael called the surgeon and described what he saw to the doctor’s nurse.

  “Sounds like it’s a section of your colon,” she said. “Have your wife bring you in right away.”

  We hopped into the ambulette, and Michael was back in surgery within the hour. It’s not every day that one of your husband’s organs nearly falls out of his abdomen, so I’m not pretending I was cool and calm about it all—especially when I found out that the medical term for what happened is such a lovely word: “evisceration.” But I was a lot less hysterical than the nurse whose job it was to come to our house and look after him.

  It’s not easy when your house is suddenly not your own—no longer your sanctuary but rather a mini-hospital with the smells and sounds to match. What’s the best way for us to handle outsiders who take us away from our normal routine, even as they provide an invaluable service? How can we stop feeling intruded upon and embrace our new reality?

  What I did was to rewire my way of thinking about home care. Instead of focusing on the irritating characteristics of the people who came to help, I focused on the help itself—on the fact that I was damn lucky to have that doorbell ring and find someone standing there who knew how to change bandages and spot a pink tennis ball popping out of an incision. So what if I was inconvenienced? They were there. And they reminded me that I needed to let go of having to run the show—that caregiving is also about delegating.

  I asked our caregivers if they had any encounters with home-care workers of any sort and, if so, whether the experience was positive or negative:

  Victor Garber: “After my mother was diagnosed with Alzheimer’s and could no longer function on her own, there were the caregivers from the Jewish Family Health Service or whatever it was called. They would send people over, and we set up the system of having someone come in during the day so she would have company and someone who could drive her. That went on for a while. It was a disaster because most of these people were paid nothing and they were incompetent. It was one person after another.

  “Finally, I found the caregiver that basically saved our lives. She was remarkable and has become a friend. She said she would work for my mom for a month or two and then she fell in love with her and stayed for five years. She had looked after children, not people with Alzheimer’s, but she was instinctive and bright and a very special kind of person. She had great empathy for my mother. I actually believe she kept her going longer.”

  John Goodman: “I met a nurse’s aide in the hospital. She freelanced there, and my wife, Donna, kind of got attached to her. I asked her if she’d
come home with us when Donna was discharged and she said yes. She was living in our house and was so helpful. There was a lot of ‘women’s stuff’ and bathroom stuff that would have been very difficult for me to deal with. She really helped get me through those initial weeks. Now she’s like part of the family. She went to my daughter’s wedding.”

  Judy Hartnett: “Paul is completely not able to transfer, which means he can’t move himself from the bed to the chair or get on or off a toilet. He hasn’t walked in years. He has use of his left arm, but his right side is useless. I used to do all the lifting myself, but a car accident two years ago has done me in. Now we have help as much as I can afford. One aide was a pothead—a complete stoner—but I didn’t care if she was a heroin addict as long as she showed up and took good care of Paul. And then there are the hospice people, who are all incredible. They really like what they do and sincerely want to help.”

  Suzanne Mintz: “My husband has the progressive kind of MS so he’s in a wheelchair full time and has limited use of one arm and hardly anything functional on the other side. We have help twice a week in the evenings. The person comes and gets him into bed, helps him in the middle of the night if he needs it, and gets him up, showered, and dressed, and gives him breakfast in the morning. He’s on his own during the day. He’s got a Lifeline buzzer in case there’s an emergency, and he’s got a power wheelchair so he gets around, and he’s got his computer and lunch is made. When I travel we have to put together arrangements as well. Not being able to delegate binds you to caregiving. Some things can get done without you, and you have to separate out the things you really think are your province.”

  Jeanne Phillips: “There was always a housekeeper living at the house with my mother, so it wasn’t like I was carrying bedpans. I know from others who are experiencing Alzheimer’s that there does come a time when somebody must live with that person because they are no longer able to take care of themselves, particularly if there should be an emergency. Some families go into denial. When the family member is difficult to deal with, no one wants to accept it. I was lucky. There have always been excellent people taking care of my mother. They are angels on earth.”

  Karen Prince: “When Andy came home after months in rehab, he couldn’t talk or read or write. His right leg was weak, but the left leg worked well and he could walk with a cane. I had a caregiver come in three days a week to shower him and make sure he had his breakfast and lunch. He could put something in the microwave, so on the days when I went to work I had the microwave set for a specific time, and I put stickers all over it that he understood. Or I’d have something in the refrigerator and it would have a dot on it so he’d know it was for lunch. We came up with a way of communicating with each other, so we didn’t need that much outside help.”

  Harold Schwartz: “My son Joseph had an incredible caregiver. Actually, he had two people. One was a fellow who worked afternoons-to-evenings five days a week—a very skilled medical worker. Then we put an ad in the paper and this amazing man answered the ad. He was independently wealthy. He had retired in his early fifties and just wanted to do something good for somebody. He was incredibly close with Joseph. He ran the household. After Joseph died, he signed up with the ALS Association in Washington and now they give him people to work with.”

  Getting help is key, even for us caregivers who think we have superhuman powers and can do it all. It’s that need for help that propelled businessman Michael Lindenmayer to start a Chicago-based venture called the Caregiver Relief Fund. This is a man who was living in Brazil, having a great time in great weather, involved in a myriad of other pursuits. What did he know about caregiving or the need for “relief”? I asked him to enlighten me.

  Jane: You could have put money into any sort of enterprise. Why did you pick this one?

  Michael: It all started when I came back to a small town in Michigan for a brief visit to see my grandfather, who was nearly ninety. He’d been living with my parents for the last twelve years. When I arrived I did not recognize any of them. They were so distraught in the worst way possible, every single one of them.

  Jane: Distraught, as in sick, or very upset?

  Michael: My grandfather was on fifteen-plus medications. He had emphysema and he bled a lot—almost like a hemophiliac. He wasn’t one of those fountain-of-youth ninety-year-olds; he was in decline and in total denial about it. My father was overweight and had never been that way before. He had migraine headaches every other day. My mother is one of those people who stayed calm even in the most extraordinary circumstances, but she was not that way anymore. She had become a full-on, every-single-day caregiver and it had taken its toll.

  Jane: Did they try to get home care to help out?

  Michael: Yes, but when I asked that question my mother started crying. She said, “The woman showed up in hot pants.” I said, “Okay, but there must be another person.” She said, “There was another person and she showed up and started grumbling about her toothache, so I took her to the dentist. A third one showed up and she had hot pants on too. I asked her why she wasn’t wearing a uniform. She said, ‘My washing machine broke.’ The woman came back and brought six loads of laundry and I said, ‘I can’t have this craziness.’ ” So I saw all this during my visit, and my weekend became a week, which became a month, which became a year. I became a caregiver to all three of them because I realized that the situation wasn’t going to improve unless I stepped up to the plate and helped.

  Jane: But helping your family is one thing. Starting a fund to help the rest of us is another.

  Michael: Having become a caregiver, I started to see how crazy making it was. I stood back and looked at America and said, “This is absolutely terrifying. This nation has done zero to prepare itself for something that is inevitable.”

  Jane: You mean the fact that the population is full of sick people?

  Michael: I mean that at some point, someone will need to be the caregiver and someone will need to be the care receiver—no matter who you are. In the U.S. we have spent billions and billions of dollars trying to live forever and now we do. But it’s a be-careful-what-you-wish-for story. We have medical patients and we have aging people, but we totally took the caregiver out of the equation.

  Jane: So you decided to do something about it.

  Michael: I became morally moved. I felt that if I could help promote a mainstream view toward caregiving, have it be something that is viewed as positive and that needs to be addressed on a very practical basis by each family, then I’d be making a significant contribution to the culture. So I set up the Caregiver Relief Fund.

  Jane: For those of us who’ve never started a fund, which is probably most of us, how did you go about doing it?

  Michael: I called the CEOs of some of the largest at-home care agencies and I said, “I would like you to donate part of your marketing budget to vouchers that I will then give away.” The idea was that the at-home agencies would send the vouchers, and a nonmedical-care person would come to your house and give you four hours of respite.

  Jane: Nonmedical. So we’re not talking about a nurse or aide.

  Michael: No, these people don’t do the medical part, but they can do a million other things for you. They may run errands or keep your family member company or do whatever needs to be done in the house.

  Jane: Why four hours? Is that just an arbitrary number?

  Michael: Four hours is just enough time to get people familiar with what the service is—and to recognize that they are exhausted. Anyone who’s been at it for a year or longer and takes even four hours off can actually say, “Oh my gosh. I didn’t realize I needed help.” So it’s a provocation to get them toward the second part, which is planning. We encourage them to plan.

  Jane: For what?

  Michael: For at-home care. Most people, even low-income people if they’re smart about how they spend their money, can afford some amount of at-home support. But some people have never had exposure to staff or service of that kind and ther
e are misconceptions like “Only rich people have servants.” So just getting them exposed to at-home care is a big cultural shift because if they don’t get help they’ll burn themselves out doing things they’re unable to do. And once you have a caregiver down for the count, you’ve doubled or tripled your expenses.

  Jane: Are these vouchers available to people in every state?

  Michael: We work with over six hundred locations across eleven states. We’ll get full national coverage in the very near future.

  Jane: What do applicants have to do to be considered for these vouchers?

  Michael: They should go to our website at www.caregiverrelieffund.org. They’ll find out how to move forward with an application. We review all the applications and prioritize them. Then we connect the applicants with the at-home care agency in their area and they will schedule amongst themselves when the care will be done. The four hours can be used all at once or for one hour each week for four weeks. It’s up to them.

  Jane: What do most caregivers do with those four hours of free time?

  Michael: Usually, the first thing they do is cry. Caregivers very rarely are recognized, so it’s like being given an award that says, “I recognize how hard you’re working.” After they cry, they either keep doing more caregiving, because they’re codependent and can’t help themselves, or they get a haircut.

  Jane: A haircut? Seriously?

  Michael: There are a lot of people walking around with a mop on their head because they haven’t had a haircut in a year.

  Jane: I’m guessing most applicants are women?

  Michael: Yes, but it’s not as imbalanced as you would expect. More and more men are recognizing that they’re caregivers. If you look at the health studies out there, they’ve found that caregiving is bad for both men and women, but it’s actually worse for men. They often delay telling people about the situation even longer than women, because they think they should be able to handle it. I’m a guy so hopefully I’m validating this for them, saying it’s okay to admit you need help. I’ve taken on all kinds of challenges in my life and never shied away from one. But this caregiving journey nearly crushed me. It literally took me to a pulp.