by Jane Heller
Jane: That’s pretty amazing, Kelli. Is there anything else you think caregivers should know?
Kelli: Yes. Touch the patient. Touch is huge. Sometimes family members just stand at the door or sit in the chair reading the newspaper. Don’t forget to touch your loved one.
Jane: I won’t.
CHAPTER 6
When Loved Ones Take on a Different Personality and You Start Wishing They’d Disappear
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“Dark thoughts are perfectly natural. They don’t necessarily mean you want the person to leave the premises. It’s the disease you want to go away. You have to separate out the person from the disease.”
—SUZANNE MINTZ, cofounder of the National Family Caregivers Association
I don’t remember much about my father, since I was so young when he died of brain cancer. By all accounts, he was a loving and generous man—someone who laughed and liked to dance and enjoyed a close relationship with his family. I do remember that on those rare occasions when he was well enough to get dressed and go to his office, he would come home with a pint of Breyer’s vanilla ice cream just for me. We had a window seat in our living room with a view onto the street. At five o’clock sharp, I’d hop into that seat and wait like a frisky puppy for his car to drive up and for him to walk through our front door and call out, “I brought you something, Janie!”
He was such a nice man that it was inconceivable that he would nearly kill me.
Okay, I’m being totally melodramatic here. He didn’t nearly kill me and this isn’t one of those stories—not even close; it just felt as if he had turned scary.
What happened was this: I was about three or four and I was sitting on the floor. My father, a tall man, was walking toward me, theoretically to crouch down to play with me. Instead, he had a seizure, lost his balance, and fell into a spastic heap across my body. I have no memory of the violent impact, only a hazy recall of having had the wind knocked out of me and of everybody clamoring to get me to the hospital.
I was fine; nothing was bruised or broken. There was just the residue of fear I felt around my father from then on. Inside my little-girl head, he went from nice to creepy in one terrible moment, and, although I tried not to show it, I became uncomfortable around him.
Two or three years later, when he was so ill that he was bedridden and near death, I made a bizarre game out of him, a freak show. I played carnival barker and invited kids over to stand in his doorway and take a sneak peek at the bald, blind, paralyzed man under the covers—the man who didn’t bat an eyelash, let alone mow the lawn, walk the dog, or wash the car like other fathers in the neighborhood. “Step right up and get a look at my dying daddy!” was how I’d lure them in. Since I was the only kid in my class with a parent on the verge of the Big D, I figured I’d use it to my advantage and boost my Q-rating at school. I didn’t sell tickets, but only because the idea didn’t occur to me.
I’m ashamed to admit all this—I still can’t believe I actually marketed my own father; I guess I was exhibiting the PR skills that would lead to my career as a book publicist later in life—but our thoughts are our thoughts. I was very young and I didn’t understand the first thing about death or illness, since no one seemed inclined to explain it to me. All I knew was that I used to have a father who brought me ice cream and then I had a father who stared into space, drooling.
I only wish my adult self could make him materialize so I could apologize to him, tell him that I just didn’t get it, and say, “I realize now that the horror-movie guy wasn’t you, Dad; it was the cancer.”
Illness can change the personality and/or social skills of our loved ones, often radically, and as caregivers we have to find ways of dealing with these changes. The problem is particularly acute when the loved one is suffering from Alzheimer’s or dementia.
Michael has been my ultimate Jekyll and Hyde, and the stunning turnabouts in his personality nearly derailed our marriage several times. When I met him, he was gentle, laid-back, respectful, not to mention my type physically (lean but broad-shouldered, muscular but not muscle-bound, handsome but not pretty).
Then came his Crohn’s flare-ups, which usually necessitated high doses of steroids. Suddenly, he wasn’t handsome; he was bloated and moonfaced. Suddenly, he wasn’t gentle; he was irascible. Suddenly, he wasn’t the man I married, and I vacillated between praying he wouldn’t die and wishing he would.
Yes, I wished he would die. Whenever he’d fly into a prednisone-fueled fury, I would fantasize about all the ways I could kill him—from smothering him with a pillow to “fixing” the brakes in his car (like I’d ever know how to do that; I can’t even pump my own gas). I didn’t really want him to die, obviously. What I wanted to die was the Crohn’s.
One incident in particular stands out:
We were preparing to move from Florida to California—a stressful time for anyone, even without the complication of an illness. I had done the bulk of the packing for us, labeling the cartons, lining them up, organizing the whole affair. Michael was not only taking prednisone at the time but testosterone. Throw in his nightly cocktail of Mount Gay Rum and tonic, and he was a walking nightmare, prone to angry outbursts that would seemingly come from nowhere.
“The kitchen stuff goes in this pile,” I said, pointing to boxes full of pots and pans. We had just finished dinner and were standing in the hallway between the kitchen and dining room.
“Who put you in charge?” Michael said accusingly, his voice raised, his complexion flushed. “What if I want to put my boxes here instead?”
I was taken aback. “What boxes?”
“Whatever boxes I want!”
Huh?
“Okay, what’s really going on?” I asked. “Are you upset about something?”
“It’s your fault that we’re even moving.”
“My fault that we’re—” I stopped and stared at him. We had decided—together—that after seven years in Florida we were up for a change of scenery. Both of us had wanted to see what living in California would be like. Both of us wanted the Left Coast experience. Both of us thought the time was right to sell our house and embark on an adventure. I certainly hadn’t put a gun to his head.
“This was all your idea and it sucks. I’m not going!”
I launched into a defense of myself and then explained that we’d already hired the moving company, rented a new place, and booked a flight, and that if he didn’t want to move he should have mentioned it a tad earlier in the proceedings.
Big mistake. You can’t reason with someone who’s incapable of reason. If only I’d known that then.
At one point during my speech, Michael exploded. I mean really lost it. His eyes bugged out of his head and his cheeks kind of inflated like a cartoon character and he punched the wall several times. (I’m so bourgeois that I actually said to myself, “But we just had it painted.”) He cursed at me and carried on like a child having a tantrum and it was all so bizarre that I could only step back and observe the insanity. I hated my husband, the whack job, and I wanted my husband, the sweetheart, back.
When I mentioned the incident to Michael the other day, as I was writing it up for this book, he said, “I remember feeling completely out of control and there was no stopping it. That’s what ‘’roid rage’ is all about—being out of control.”
I get that now. I got it an hour after the incident. Once I had a good cry and calmed down a little, I realized that, as a caregiver, I not only had to make the distinction between Michael and the chemicals that were distorting his personality, but I also had a responsibility to discuss his drugs with his doctor.
The result? We eliminated two of the three troublemakers: the testosterone and the Mount Gay Rum. Life with Michael improved, and we were off to California feeling more hopeful about the future and each other. But his behavior under the influence really rattled me and I don’t think I could have stayed in the marriage if he’d continued to be a monster.
Suzanne Mintz summed up my
situation and that of many other caregivers this way: “When it gets to the level of abuse,” she said, “you’ve got a decision to make. It’s just like if a wife is beaten: Are you going to put up with this? Can you put up with this? You are allowed to say no.”
Good point. We are allowed to say no.
I asked the members of my newly formed support group if they’d ever been plagued by dark thoughts—from the secret desire to bump off a loved one (or themselves) to the urge to just walk away.
Barbara Blank, while her ninety-six-year-old father was still living with her before moving into a seniors’ community: “My father’s rages are more extreme now because there’s clearly some dementia there. Like yesterday he insisted on doing something in his apartment. We went over and I did it his way and it didn’t work. He started screaming obscenities at me, and I got really angry back for the first time. I said, ‘How dare you talk to me like that! Call one of your other wonderful children and tell them to do this.’
“He calmed down, but I don’t like losing it. I thought, I’m gonna kill myself. And then I thought, No, wait a minute. I’m gonna kill him! He just isn’t the same person anymore. Sometimes I look at him when he gets nasty and I divorce myself from the fact that he’s my father and say, ‘He’s just a person.’ I have a box in my brain. If something’s really bad, I put it in the box and seal it up. I’ve learned how to do that.”
Harriet Brown, during the time she was overseeing the family-based treatment plan for her anorexic daughter, cooking for her, sitting with her and making sure she ate every meal every day: “I guess the closest I came to getting in the car and driving away were those one or two nights when I threw a lot of dishes around the kitchen. But then I’d just think, ‘Well, you have no choice. You have to keep going.’ ”
Linda Dano, on her father’s behavior before she realized he had Alzheimer’s: “Right after my father came to live with us, his behavior was so crazy he ended up in the psych ward. It was literally like the movie Snake Pit where people would run by you and go, ‘Whoooooo!’ And when he stopped eating, I gave him the feeding tube, not knowing what was wrong with him. Once he was in the nursing home, he would cry all day long. I went through a period where I was going to kill him myself—put something in his feeding tube and let him peacefully go to heaven. I was so guilty. I should have taken him out of there, hired three nurses, and given him morphine for a week. I never forgave myself that I couldn’t help him. To this day I haven’t forgiven myself.”
John Goodman, when his wife was in the ICU after surgery for her Cushing’s syndrome: “She was in a room for a week with no windows, so there was no day or night, no sense of time. She was raving crazy. They called it ‘ICU psychosis.’ She would bite me, bite the nurses, even try to bite the doctors. For a brief while they literally tied her to the bed. There were days when I’d walk in the door and she’d smile and know who I was, and there were other days when I’d walk in and it would be awful.
“One time I walked in with a bacon-and-egg sandwich and she threw it on the floor. It was eight o’clock in the morning—not the way I wanted to start my day. It was very difficult. But whenever I’d go in the hall and break down, my daughters would say, ‘You know that’s not Mom. You know she’s crazy right now. But this is treatable and she’s going to get better.’ They were there and they helped me get through it.”
Judy Harnett, when her husband was hospitalized and treated with prednisone: “The last time was a nightmare. They just pumped him up with steroids. He was bug-eyed and insane. He didn’t even know who I was a couple of times, and he was mean and nasty. At least it was while he was in the hospital so I didn’t have to deal with it by myself. I never wanted him to hurry up and die, except when he was on the steroids.”
Cecilia Johnston, on her mother’s descent into Alzheimer’s and her own reaction to it: “My mom’s memory is like Swiss cheese and you just never know which hole you’re going to drop into. I’m at the point now where I want her to die. I love her more than anything in the whole wide world, but her father had dementia and her great-aunt did and my mom was their caregiver. She said, ‘I never ever want to be in this position. Please kill me if I am.’ I said, ‘Mom, that’s all well and good, but I’d get thrown in prison. If that’s what you want, you need to do that.’ Unfortunately, she didn’t commit suicide when she had the capability.”
Harold Schwartz, on caring for both his son with ALS and his wife with Parkinson’s: “When we would go to DC to take care of our son, I would literally shower him and brush his teeth and clean him up after the toilet, and I would think to myself, we’re back to him being a baby because I did this for him when he was six months old. It came pretty naturally, but sure I got depressed. There were times when I’d say, ‘I wish this was all over.’ Did I ever say, ‘Why me?’ No. A lot of people ask, ‘Why me?’ My answer is ‘Why not me?’ I could pick up the newspaper every day and read about people who have so much worse problems than I do—people who face devastation all over the world. To me life is a giant crapshoot. Things happen. You’re lucky or you’re not lucky. You don’t have the luxury of saying, ‘I’m not going to do this’—not when you’re talking about the people you love.”
Toni Sherman, after her ninety-four-year-old mother fell and sustained brain damage prior to her diagnosis of cancer: “While she was in the hospital she had trouble recognizing her husband and was unclear about a lot of things. She was also argumentative and had never been before. When she got home, I went out to pick up some prescriptions for her. I got back and her husband said to me, ‘Your mother thinks that you and I are having an affair.’ I was stunned. I turned to my mother and said, ‘Why would you think that of me?’
“She was my mother and she was accusing me of the worst kind of betrayal. I had to leave. I was devastated. When she was diagnosed with cancer, she came home with hospice and was pleasant, pliable, able to laugh. But she had been slipping so badly that her responses could be weird. It was like dealing with another person, and it was hideous to watch. I wanted her to go. I’d had it.”
John Shore, on the experience of caring for his eighty-five-year-old father despite not having seen him in years: “My father is a terrible, terrible person, but when you’ve got a parent who’s gone down, you can’t just write them off. You want to run away and say, ‘Not my problem; I live all the way across the country.’ But you know you’ll go to your grave not feeling good about yourself. So my feeling was, I should go. And, as I expected, my dad was horrendous to me.
“I handled it by just functioning—cooking and cleaning and doing what I was doing. I never got upset. Well, there was one time when we were driving. He’s always in a rush. I was taking him to the drug store and it was pouring rain with bad visibility, and he really wanted me to run a red light. I came to my naturally slow break at the light and he screamed with such tremendous volume and venom and moved to strike me—just raised his hand like he was going to pop me on the side of the head. I can’t say that didn’t bother me. But I didn’t flinch.
“Everybody has a singular challenge in life—to figure out who they are in relation to their parents. You don’t take care of that? Nothing else in your life ever works. Also, when you’re taking care of your husband or your father or your mother, you’re suffering for a greater good, for somebody else’s well-being. It’s an honor. So that’s why I didn’t mind being with my dad. I’d go back there again.”
Diane Sylvester, on driving back and forth from Santa Barbara to LA to care for her mother with dementia: “It was pure hell for a couple of years. My mother was living alone. We tried live-in people a couple of times, but she just went berserk. Then she started doing really bizarre things, like talking to her purse, thinking it was the telephone, forgetting how to turn the TV on and off, making bizarre calls at all times of the day and night, and not going to bed; she would sit in her chair and just stay there all night long. Every once in awhile during my numerous trips to LA, I’d just mentally crash on th
e freeway. I would call my husband and say, ‘You need to come. I can’t do this. I can’t face what’s happening down here.’ And he would get in the car and come down.”
To sum up, being a caregiver inevitably means experiencing one or more of the following emotions:
∗ Guilt.
∗ Helplessness.
∗ Frustration.
∗ Rage.
∗ Resentment.
∗ Sadness.
∗ Loss.
Good, good times, right?
But here’s the thing. There are good times if you’re open to them. The trick is to acknowledge your dark thoughts and feelings, resign yourself to getting fed up with the whole mess on occasion, and confide in people who won’t look at you as if you’re Casey Anthony. If you share the dark thoughts with somebody else—actually say them out loud to a friend, therapist, or the guy standing next to you on the subway—you’ll feel better. You will.
CHAPTER 7
How to Wait Out Waiting Rooms
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“Make sure you’re up every twenty minutes—walking around the room or bending down to tie your shoes. Any kind of little movement is a very good thing. It resets your body and helps you relieve stress.”
—NANCY KALISH, certified health coach
Michael had surgery twice in 2010 and both times I spent hours in the surgical waiting room, waiting—waiting for the doctor to emerge from the OR with news, waiting for a hospital volunteer to tell me I could go back into recovery to see my husband, waiting for him to wake up and prove to me he wasn’t dead.
Waiting is not my strong suit, so this aspect of being a caregiver has been yet another adjustment for me.
Here’s what I’ve learned about waiting rooms: they’re not libraries. They’re not even Barnes & Nobles. It’s hard to concentrate on the book you’ve brought to read because the people on either side of you are talking and distracting you. You don’t mean to eavesdrop on their conversations, but you can’t help it. Sometimes you want to stand up and yell, “Could everybody please shut up,” but you’ve been raised to behave better than that, besides which, security would probably come and cart you away.