I hate the telephone. It's a bearer of bad news, or at least annoyance. I shut off the ringer and just listen to my messages twice a day. Sometimes, even that doesn't work.
“Myke, it's me.” Me is my sister, Gayl. I recognize her voice immediately. “You've got to do something. Sunrise is bugging me to put Dad in hospice. I get a call from them every day. They won't leave me alone. We have to do something.”
Hospice is a service that takes care of dying people. Sometimes they have their own facilities. Sometimes they do it in the patient's home. Sunrise is the assisted-living facility where my father has been for more than 5 years. It's now his home. When Sunrise has a problem with Dad, the staff calls my sister. She answers her phone.
I call her back.
“They tried this a year ago,” I tell her. “Some Chaplain or Reverend called me up. She worked with the hospice. She told me the doctor said Dad was ready. I said he wasn't. He fooled them, huh?”
“I know all that,” she says. “But you have to do something about the calls. They keep bugging me.”
“Okay, I'll talk to them,” I tell her.
Two years ago, we'd let hospice take care of my mother at Sunrise. In two months, she was gone. I've been distrustful of the hospice mill ever since.
“It always happens,” said Celina (name changed), one of Dad's favorite attendants. “They go into hospice and then they die.”
Brenda is the manager of the Reminiscence (memory impaired) section of Sunrise. After Mom's funeral, I told her what Celina had said to me.
“She should never have told you that,” said Brenda. “That's completely irresponsible. We support hospice. I'll talk to her about that.”
“Don't shoot the messenger,” I didn't say... but should have.
“Ow! Owww! AAAAARRRGH!”
I'd recognize that scream anywhere.
“Hi Dad,” I say walking into Reminiscence.
Dad has diabetes. It causes severe pain, especially in his legs. Diabetic Peripheral Neuropathy it's called. He also has bedsores. Big festering sores. He gets up, eats, they put him back to bed. Then up for a few minutes, in a wheelchair. Then back to bed. You'd have bedsores too.
Dad is a brave guy. He lost an arm in World War II. More recently, he lost an eye to a detached retina. One leg's become useless due to diabetes and a stroke. He goes on. He moans, but doesn't complain. If he sees me upset with the staff, he'll ask me to calm down, to understand them. He's a diplomat.
Dad's never accepted Mom's death. Every time I visit, he asks, “have you said hello to your mother?” Every conversation includes “Did you tell you mother that?”
I see that Celina is with Dad now. I walk over to them both.
“I hear you don't want to put your father in hospice,” she tells me. “We just had a woman in hospice. She died five years later. Another, they took off hospice after two years. She got better.”
That's quite a different song from the one she sang when my mother went into hospice. I guess she's had her talking to.
As usual, Dad's happy to see me. I wheel him to the lunch table. We sit together. I talk about work. (I teach English.) He talks about his fantasy life which he can no longer separate from his real life.
“I just got off the plane from Washington DC,” he tells me. “They were having a big meeting. You know the topic of the meeting?”
I shake my head.
“Me!” he says, laughing.
Lunch is about to be served. They usually feed Dad some pulverized food mushed into unrecognizable scoops of various colors. An attendant mixes the piles together, then dumps the glop into Dad's mouth, like giving baby food to a child. They give him water or juice with some starch thickener in it.
“It's the only way he can swallow,” Celina tells me.
Dad hates it.
I ask Marie, an attendant who really seems to care for dad, to give him a sandwich. At least put the puree between two slices of white bread. Like real food.
“We'll do it because you're here,” she says. “Otherwise, we're not allowed.”
“He's lost fifty pounds,” I tell her. “He spits out his food. When I'm here he eats. He drinks... real water with nothing in it.”
“That's because you're here,” she says.
I get the sandwich and instead of feeding Dad, hand it to him. He eats it, chewing greedily.
I'm ready to eat, too. Institutional food, but at least it's not ground mush. The chicken looks like chicken, sort of.
A woman comes over to me. She's about my age, maybe a few years younger. She's shorter than I am, and she looks so much like my cousin Shirley, it's disconcerting.
“Mykel?” she asks.
“That's him,” says Dad.
I just smile, a half eaten chunk of chicken stuck in my mouth.
“I'm Nancy from Life Source Hospice,” she says. “I'd like to talk to you about your father.”
“Can I just finish lunch first?” I ask.
“Of course,” she says. “I'll come back.”
In ten minutes, she's back. I swallow what's in my mouth.
“I understand you don't want to put your father in hospice,” she says. “I don't want to pressure you. It's a difficult decision and you have to make it. But do you really want to see him in the hospital with tubes in his arms and a feeding tube down his throat, kept alive like a living vegetable. Is that what you want?”
“Ummm,” I say. “My father is right here. Don't you think we should ask him?”
“Is he capable of making such a decision?” she asks.
“We can ask,” I say.
By this time, Dad has finished the sandwich. He coughs a bit, then stops. “That's the most he's eaten in days,” says Marie.
“It's that baby food,” I say. “He hates it. Give him a sandwich and he'll eat.”
“Now we take him to his room,” Nancy says.
We wheel my father to his room. Nancy comes with us.
I talk to Dad.
“Dad,” I say, “this woman is from hospice. They want you to go into hospice. What that means is that when you get really sick, they won't put you in the hospital. They'll let you kick off here.”
Nancy looks at me with a frown.
She walks to the wheelchair and takes Dad's hand, petting it like it's a pet gerbil. She looks into his eyes.
“What we are,” she tells him, “is a way for you to live peacefully. At home. You don't want to go to the hospital again, do you? You don't want all those tubes sticking in you. You don't want all those x-rays and tests. Then more tubes. And you'll be on a feeding tube, kept alive like a vegetable.”
Again with the feeding tube! I never heard of a vegetable with a feeding tube, but seems to be the preferred image. Everyone who goes to the hospital ends up on a feeding tube.
Dad's not answering. Not saying yes or no. I don't know if he understands, but he certainly knows Nancy and me do not see eye to feeding tube on this. Dad, ever the diplomat, says nothing. He just smiles and looks in Nancy's eyes.
“Good-bye Dad,” I say, kissing him on the forehead.
Nancy and I leave the room and continue talking.
“He's in pain,” says Nancy. “With hospice we can take care of that.”
“I don't get it,” I tell her. “That's the choice? Pain or death? Why can't he get enough medicine for his pain without going on death row?”
“The pain is managed towards different ends outside of hospice,” she says. “We have different aims from doctors.”
“I am not Doctor Kavorkian,” she continues. “I'm not Doctor Death.”
“At least people who contacted Dr. Kavorkian wanted to die,” I tell her. “They asked him. You're here pushing this on me.”
“I don't want to push anything,” she says. “Let me give you the papers and you decide if you want to sign them or not. Take my card too.”
I look at the business card. It says, When days cannot be added to life, add life to every day. I read it out loud. “But what if days CAN be added to life?” I ask-- but only in my head.
“My sister has power of attorney,” I tell her. “I don't.”
“It doesn't matter,” says Nancy. “You are next of kin. You can sign the papers.”
Then, she shakes my hand and leaves the room,. I have a headache and a folder full of homework. I'm ready to leave.
Leave? Not yet. Brenda pulls me aside.
“Mykel,” she says, “we're really worried about Dad. He's not eating. He's always in pain. We think hospice would be the best thing. We know you don't want it, but it really would be the best. His doctor recommends it.”
“Your father's roommate, Sal, is on hospice,” she continues. “An aid comes in every day. It would be easy to have her visit your dad too.”
“It's not because he's too loud and annoys the other residents, is it?” I ask. “Hospice would keep him quieter.”
“Of course it's not that,” answers Brenda, obviously offended. “We only want what's best for your father.”
“OWWW OWWW OWWWW OWWWW!” I hear Dad again, as if on cue. A very brief I- told-you-so look comes over Brenda's face.
I walk back over to Dad.
“What's the matter?” I ask. “Is it your legs?”
“I'm sliding down,” he says. “I need some help to sit up straight. I need some help. OWWW OWWW OWWWW OWWWW!”
Celina comes over and helps me straighten him in the wheelchair.
Hmmm, maybe he's using too many resources. If he's on hospice, he gets an attendant. They fix the wheelchair posture... and feed him... and do I don't know how much else. Celina always complains about short staffing. About how residents demand to be fed, taken to the bathroom, brought water, have the TV on, the TV off, louder, softer. There are not enough people to take care of all those needs. Staff cut-backs, fewer people doing more work. An extra hospice hand wouldn't be bad for Sunrise.
As I leave, Celina pulls me over to the side.
“This morning your father was screaming, I want to die. I want to die. I told him You can't die yet. Mykel needs you. That's what I told him.”
“Yeah, right,” I tell her.
She certainly had a talking to.
When I get home, I let the papers sit for a long time. Days. I look through them. I note the pen-marked X's where I'm supposed to sign, giving my permission for this and that.
It's mainly the DO NOT RECESSITATE that bothers me. I can even sign the DO NOT HOSPITALIZE agreement... but what happens if he inhales a piece of chicken? Will the Heimlich go unmaneuvered because I signed the paper? If he gets an infection, will he die of some bacteria that a bottle of peroxide and a band-aid would have prevented?
Eventually, I sign everything except the DNR. I need to wait for more explanation on that. Shouldn't DO NOT HOSPITALIZE take care all the problems?
I'm getting a headache. Since Dad's aneurism and following strokes, every headache for me brings on thoughts of a stroke and my own future time in assisted living.
I take a break from the papers. I need some rest. I'll check my phone messages and then take a nap. I press the speakerphone button. The dialtone beeps instead of buzzes. I have a message.
It's my sister.
“Myke,” says the message. “I'm over here at Sunrise. They say I'm the only one who can sign the papers, but they also say you have the papers. They won't let me alone!”
“Please,” she pleads, “they're driving me crazy.”
I call Sunrise. Transfer to Brenda.
“Your sister is here,” she says.
“I know that,” I tell her. “She called me.”
“She said you had the hospice papers.... Here, I'll put her on the phone”
I hear the transfer.
“Myke,” says my sister. “I don't know what's going on. They called me and said I had to come in to sign the hospice papers. I have a teenage son to take care of. They said it couldn't wait. I had to sign the papers NOW. I was the only one who could do it, because I have power of attorney. You told me YOU had the papers. This is killing me. They just won't leave me alone.”
“I do have the papers,” I tell her. “Power of attorney is not an issue. I'll sign what I can and bring them in. Let me speak to Brenda.”
“I have the papers,” I tell Brenda, feeling my blood pressure rise way past the safe level. “I'll bring them in when I come to see Dad next week.”
“I just wanted to make sure,” she says. “I thought your sister had to sign them because she has power of attorney.”
“No,” I answer, “Nancy said any next of kin can sign. Didn't you talk with her? She gave me the papers.”
“I was just making sure,” says Brenda. “We're just concerned about your dad.”
I can hear an apology in the background. I speak to my sister once more and assure her I'll be there the following Monday with the paperwork. She tells me she can't do anything on Monday because she has to work until 5, then take her son to a school wrestling match. I tell her I can handle it.
My head is pounding.
Monday, I arrive at Sunrise just in time for lunch. I sit with Dad so we can eat together. Usually, his roommate Sal sits with us at the table. Today, he isn't here.
Where's Sal?” I ask Celina.
“Oh,” she tells me, “he passed away last Tuesday. Quietly, in his sleep.”
Dad takes the first bite of his sandwich. I sense a presence. I can't say lurking over me, because it's a petite, someone matronly presence. It's Nurse Nancy from the hospice.
“I see you're eating now,” she says. “I'll let you finish.”
In ten minutes, she's back.
“Ok,” I say. “Let's talk about this. “
We go into Brenda's office and sit down at Brenda's desk, next to one another. Brenda is not there.
“I signed everything except the DO NOT RECESITATE,” I tell her. “I'm worried about that. Something minor could happen and be easily fixed. What happens if he chokes? Do you refuse the Heimlich? What about an infection? No antibiotics? A heart attack? Maybe you can do it with a defibrillator. I don't know...”
“He'll get the Heimlich if he needs it,” she tells me. “And oral antibiotics. If he gets CPR, I can tell you, in his condition he'll crack some ribs. Then they'll bring him to the hospital. He'll go on IVs. Then they'll have him on feeding tubes....”
“What's with the feeding tubes?” I ask. “He gets an ingrown toenail and you have him on feeding tubes.”
“That's what could happen,” she says.
“But I signed the DO NOT HOSPITALIZE form. Sunrise doesn't have feeding tubes.”
She shakes her head like she's speaking to a child.
“You just don't understand, do you?” she says. “DNR means NO CPR.”
“Then what does DO NOT HOSPITALIZE mean?” I ask.
“It's all part of the same thing,” she says.
“If we're so worried about rib damage, can I change the contract to read: NO CPR?”
“It's the same thing,” she says again, struggling to keep her temper.
“If it's the same thing,” I say, “you won't mind changing it.”
She calls her boss. I can only hear Nancy's end of the conversation:
“I have Mr. Board's son here. He wants to change the contract to read NO CPR instead of DO NOT RECESITATE. Can we do that?”
“I know it's the same thing. But he doesn't understand that. Can we just cross out DNR and put NO CPR?”
“Okay. We'll see if that works, bye.”
She hangs up.
She takes the form and crosses out DO NOT RECESITATE, and writes next to it NO CPR.
I sign it.
“Now, there's one more form,” she says. “This one is in case someone calls EMS. We post it so they don't bring your father to the hospital.”
I look at the form DO NOT RECESITATE it says in big letters.
“Can we change this one too?” I ask.
“I'm sorry we can't,” she says. “This is a legal document.”
“You mean the other one wasn't?” I ask.
“I'm sorry,” I tell her, “I'm not going to sign something like that. I already signed DO NOT HOSPITALIZE, so if EMS comes, they'll either save him on the spot or they won't.”
“I don't know why you can't understand,” Nancy says and reaches for the phone.
I figure she's calling her boss again. I figure wrong.
“Hello, Gayl?” she says.
“I'm sorry,” she says. “I'll try not to keep you very long. I know you have to work.”
“The problem is your brother,” she says. “He doesn't understand. We just want to do what's best for your father.”
“I understand,” she says. “I can send you the papers. All you have to do is sign them and bring them back. It's easy. I just need your address.”
Cradling the phone between her ear and shoulder, she writes it down.
“Okay,” she says. “I'll send them right out to you. Sorry to bother you.”
She hangs up.
“You don't have to sign any more,” Nancy says to me, signing in relief. “Your sister will sign.”
I nod, not feeling the least bit relieved.
“Okay Mykel,” she says, “here's my card. If you have any questions, call me. We want you to feel comfortable about this.”
“Comfortable? Are you kidding?” I don't say. “I just signed a form killing my father and you want me to feel comfortable?”
I nod and take the card. She leaves. I walk over and kiss Dad good bye.
“See you next week,” I tell him. “It's almost your birthday we need to plan something.”
Next week's visit is for Dad's birthday. We're a few days early, but it's the only day both my sister and I can get away. I come ahead of time to eat with him and buy supplies: baby wipes, bed protector sheets, and diapers as the staff calls the incontinence briefs. When I walk into his room, a man I never saw before sits on Sal's bed. I walk over to him.
“Hi,” I say, “my name is Mykel. I'm Fred Board's son.”
“Hi,” he says, “I'm Dean.”
We shake hands. Then I leave him to see Dad.
Dad's in his wheelchair, pillows around his body. Next to him, a husky woman sits on a stool watching television.
I look at my father, lying almost horizontally in the wheelchair... without his dentures or glasses. Asleep? I can't tell. The woman is engrossed in the TV show. It's a Western.
“Gayl's coming for your birthday, dad! Time to get up and ready for lunch and cake,” I say.
He seems a bit groggy, but he understands what I'm telling him.
“All right,” he says. “Don't forget to tell your mother.”
TWO WEEKS LATER: Dad isn't dead yet, but it won't be long. When I visit him today, he hasn't been out of bed since I was there last week. His bones show through his loose skin. I'm afraid if I touch him, I'll break him. He's alone in his room-- no attendant at all. An oxygen tube around his face. I put on my cheeriest voice, but it's hard.
Dad breaks into a phlegmy cough. I can hear the juices rattle from his lungs.
“Hi Dad,” I say, repeating one of his usual jokes. “You want me to get your glasses for you? Otherwise you can't hear anything.”
I look for someone to find out what happened and why Dad isn't out of bed. I find an attendant I haven't seen before. She's dressed like a nurse.
“He should be out of bed,” she says. “I don't get it with the staff in here. Susan (the general manager of the facility) says, 'keep Fred in bed. We're giving a tour today and we don't want people to see that. We want things to look cheery.' So they keep him in bed.“
Dad whispers something, but I can't understand it. I put my ear next to his mouth. But I can't make out a thing. I get his glasses and slip them over his face. I can see that he knows I'm here. He wants to say something to me, but can't.
“I haven't eaten today,” I tell him. “I saved the hunger. I was gonna eat with you. Are you hungry?”
“No,” he whispers.
“Are you thirsty?” I ask.
“Yes,” he whispers.
I go for the real water... unadulterated... like he likes it. He drinks greedily. As he's drinking, Grace, one of the nurses walks in the room.
“You're giving him water???” she says. “With nothing in it? He aspirates. It goes right into his lungs.”
She takes the glass out of my hands and returns with a glass full of thick white liquid. She hands me the glass.
“You want to give it to him?” she asks.
Celina walks in the room, carrying a spoon. “Here,” she says, “let me.”
She spoon feeds him the gunk.
“It's your fault,” says Grace. “Anything he eats or drinks goes into his lungs. He has trouble breathing. You give him solid food. He chews. You give him water. He drinks. Goes right into his lungs.”
As if on cue, Dad coughs again.
“See,” she says.
“He coughed that way before I gave him anything,” I tell her. “He hates that stuff in the water.”
“You'll give him pneumonia. He's had a temperature. He aspirates.... we'll try to get him out of bed.”
“It doesn't work to get him out of bed just because I show up,” I tell her. “What happens when I'm not here?”
“He's not eating,” Marie tells me later. “We try to feed him in the morning but he spits it out.”
“I'm planning a trip to California next week,” I tell her.
“If he were my father, I wouldn't go,” she tells me.
Kindly, Dad stays alive until I get back. I reserve a car to visit him on the first Sunday after my return. My plan is to greet him with Thanks for Waiting.
Saturday night, I'm at dinner with a dozen friends. My cellphone vibrates. I check the screen. It's from Gayl. I know without answering.
We later find out that two of the other people in hospice “care” also died that week.
Though I can't prove it, I really believe that hospice killed my father. As soon as we turned him over to them, he started on the quick road downhill.
The life-saver that pulls me back from the guilt of giving him to the death factory is the memory of him sitting in his wheelchair screaming. This was last month, but I won't forget it.
“What hurts, Dad?” I asked.
“Is it your legs?”
“I don't know what to do,” I said. “What do you want?”
“Out,” he said.
My parents were here for about 5 years until their recent deaths. A complete review would take a book.
THE STAFF: The individual caregivers are great. Really caring people who go out of their way to help the tenants. They face a difficult situation and do it with humor, dignity, and concern. You will love them.
THE FACILITY: It's a large rambling house with two levels. On the first floor is a communal dining room and the REMINISCENCE area for the memory impaired. The place is clean, and interesting, with a garden in back.
THE MANAGEMENT: The bottom line is THE BOTTOM LINE. Chronically understaffed, I've seen tenants sitting and yelling for help -- sometimes just to go to the bathroom-- with no one attending them. It's not because the staff doesn't care, it's because there just aren't enough people working. If you look at the facility, do NOT make an appointment. Just show up and look around. A caregiver told me that they hide the "unpleasant-looking" residents when they give tours. Also, family members are prohibited from joining residents for meals in Reminiscence. For me, this was a big minus.
MEDICAL CARE: There is a registered nurse who actively monitors the residents. They all get proper medication when they should. Sometimes, however, residents seem to medicated to be kept quiet. When a resident requires too much care, s/he will be nudged into hospice, and die soon after. This happened to both of my parents.
This place is a lot better than others I've seen, especially the quality of the staff. But it is a business... and that's always first.