On Sept. 21, 2004 I was gifted with a donated liver. It was a 7-1/2-hour surgery. I spent two days in the intensive care unit and nine more days in the hospital, unsuccessfully...
On Sept. 21, 2004 I was gifted with a donated liver.
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It was a 7-1/2-hour surgery. I spent two days in the intensive care unit and nine more days in the hospital, unsuccessfully trying to configure the hospital bed so that I could sleep on the 38 staples that were holding my 15-inch incision together.
I take 27 pills a day. I have lost 50 pounds since I was diagnosed in 1997. I need 100 grams of protein and 2,300 calories a day. Fortunately I have finally regained about 85 percent of my appetite. I have trouble sleeping. I am not supposed to drive just yet. I am very lucky. Others have waited and are still waiting longer than I had to. My recovery has been mild in comparison with other patients. I hope my good fortune holds.
I am getting better every day in an up-and-down sort of way. But I still need caretaking. My wife is my caretaker; I have little to want. She makes me lie down. CityClub, where she is executive director, has granted her an extended leave to guide me to still waters. She has extraordinary patience.
People needing care come in various stages of depression, anger, drug therapy, dementia, impatience and incontinence. They may have a limited or inappropriate appetite. They want your constant attention, and they want to be left alone. It can be difficult to know how to best get along with the big lug. That would be me.
As a sometimes irritable and sometimes pleasant but chronically ill man, allow me to suggest to you, the caregiver, some things to say to us, the infirm, along with the countless bowls of soup you prepare and insurance forms you fill out.
It may be a good idea to rehearse this in front of your dog or houseplants. Here we go:
From the caregiver to the sick
“I love you and I am going to nag you.” Or, to paraphrase the Marines, “I’ll be your best friend if you cooperate, and you will be your worst enemy if you resist me.”
“I know what is best for you. You have to trust me. I am able to pay better attention to the doctors than you are.”
“Please tell me immediately if there is a new symptom or pain. Bravery is helpful, but a little goes a long way. Let’s not wait until ambulances have to get involved.”
“I also need to know when you feel good. I can’t always tell. If we happen to be in separate rooms please shout it out loud.”
“You must make exercise a priority. If you don’t I’ll have to break your arm. It’s that serious. If you are in a head-to-toe cast, exercising is negotiable.”
“Keep yourself clean. Cleanliness is next to godliness. This does not imply a choice. If you can’t do it, I am happy to scrub you down myself.”
“Like the dentist says, ‘You don’t have to floss all your teeth, just the ones you want to keep.’ You are not exempt from that daily ritual of health. Brush your teeth like they vote in Chicago early and often.”
“You are not allowed to cast your eyes on the TV more than two hours a day and you must mute all the advertising. Watching TV will only make you feel worse as you have to look at all those strangely beautiful, grinning older folks water-skiiing and dining at fabulous hotels around the world. Depressing.”
“Go ahead and cry. I won’t try to stop you. I may even join in. We’ll both feel better. Isn’t it odd how that works?”
“I never tire of your expressions of gratitude and love, love, love.”
“Even though you might not be as active in your life as you used to be, you have not lost an ounce of your own high status as a human being. If you are in a wheelchair, your loss of height means nothing whatsoever. Some people will think they are better than you. They have their own problems. They are dopes.”
From the sick to the caregiver
Bette Davis said, “Growing old is not for sissies.” Neither is being a caregiver. It’s round-the-clock worry.
We chronics are not always able to drive, wake up at an appropriate hour or distinguish the calcium pills from the beta-blockers or the diuretics. At times we resent being cared for but we must trust our caregivers whom I call, “Those who can do no wrong.”
We all need help. We all need to borrow your truck, a cup of blueberries, a ride to the airport and someone to listen to our aches and pains and jokes.
If you need care and you have some hesitancy expressing your needs, I have written a few sentences you could read out loud to your caregiver. First of all turn off the TV and say, “I want to read something I read in the newspaper this morning to you. Then let’s talk about everything. Even if we already have.”
Then pick out what you find useful here and file away the rest:
“When you look at me and smile for no apparent reason it can make me rest easier for a long while. That smile of yours reminds me that I am human even though sometimes I feel I am little more than my disease. I trust your smile.”
“I trust that you are not just trying to make me feel better even though we both understand it’s part of your job description. I assume you smile at me because you care, you love me, and it makes you feel good, too. I will always try to smile back at you. If I don’t, ask me for at least a fraction of one. I forget that you need to see me smile, too. I know that you have private agonies, both about me and about your own world outside this house. The cumulative effect of those little smiles that we gather can make it seem like the whole house has been repainted.”
“Sometimes I feel hopeless and angry. Just let me say it out loud. I need the visceral jolt of a good blurt. It makes me feel a little better. If it makes you feel worse, tell me. However I do need to know that you understand my worst moments. You may blurt to me also, and we can maybe enjoy the game of topping whose feelings are the most miserable.”
“Sometimes very old people ask out loud, ‘Why is God letting me live so long? I’m tired, I feel finished and I’m ready for the next big thing.’ For some fleeting moments I can feel that, too. But never worry that I might get so depressed that I would end it all. Thank you for respecting those fleeting thoughts.”
“What always feels incredibly good is when you stroke my face. Our faces do not get enough attention. Kissing is wonderful, but soft attention to my pale face is not only a spirit lift, it’s a face-lift.”
“I am trying to be positive. But who in the world can be positive all the time? It’s not only impossible, it’s boring. I like people with a little salt to ’em. It’s tough enough that I am on a low-salt diet.”
“As this disease rains on my parade, I worry that your parade is getting wet, too. I want you to run in the sun. I don’t like it that your friends feel sorry for you. I wish I wasn’t the opening line of conversation with your friends. I worry about your health. Recently I read that 60 percent of caregivers of those afflicted with Alzheimer’s die before the afflicted one. Please be careful. Live your life, see your friends, go bowling, get plenty of exercise and read good books.”
“I want to be a hero for you. I want to do the dishes and snuggle with you in the middle of the night, do the laundry, cook, shop, clean the bathroom, write you a poem. I drag myself into these chores when I can. It feels heroic. Thank you for understanding when the dishes pile up. I don’t want you to do the dishes!”
“Lie down beside me. Tell me you think I’m looking pretty good, that you love me, that I am brave, that I am smart, that I can make you laugh (make me laugh, please). Tell me everything is going to be OK.”
“It’s OK if you are not in the room with me all the time. Misery loves just so much company.”
“Take a nap with me. Unplug the phone. Listen as we breathe together.”
“Tell people to bring their friends and their kids over for a chat.”
“I have hope. We know that I had a life before all of this mess. Tell me what we’re going to do when my condition improves. I’ve got some ideas, too.”
A final word
To repeat: I know that on many fronts I am a lucky man. I have had wonderful caretaking from many, many people. I’ll never forget the anonymous source of this borrowed liver. The grayest sunset, the bare trees of winter and the flowers of spring are more beautiful than ever. I cry easily these days. Along with this new liver comes new eyes, ears and comprehending.
It has been good to share this all with you. So many have e-mailed and sent cards with comfort and shared stories. Be assured that there are many caring people among us. Look around and you can see that you are lucky too.
Jack Slater is on a medical leave from the Seattle Public Schools, where he teaches history. He was born in Chicago, graduated from Calvin College in Michigan and worked for 20 years as an actor and humorist. He has been a community and political activist and is an avid artist and gardener. He lives in Ballard with his wife, Deborah Swets, the executive director of CityClub. You can reach him at firstname.lastname@example.org.
Seattle Times photographer Alan Berner can be reached at 206-464-8133 or email@example.com.
To reach an editor about this project, contact Jacqui Banaszynski at 206-464-8212 or firstname.lastname@example.org.