Saturday, October 17, 2009


It's a little after three a.m. and I'm telling Daddy yet again where home is. He can't remember. He doesn't know the street or the town; thinks he's still in Peoria where he settled after World War II. "Where is Pat?" His wife, my stepmother, his anchor. "She's at home, Daddy." "Where is home?" And the loop starts again.

My very proper father has to urinate. He tells me "I'm sorry, but I really have to p-e-a." It's the way we said it as kids. It was never pee, never #1, but p-e-a. I am 52 to his 92 and he still surprises me by remembering those little things. But home? Where is home? Where is it?

"I feel so lost. Where am I?" I can say that it breaks my heart, but that's so inadequate as to be laughable. I can't describe the pain. It's actually physical, this emotional anguish. Could my heart truly shatter? It feels like it.

I don't know what to do. This is the second night we've been in this miserable excuse for a hospital. He's hooked up to IV fluids, trying to raise his sodium level to something approaching normal. He walked into the hospital. Now he can't even stand.

"I have to p-e-a, real bad." I call the nurse. Again. No one comes. I call a second time. An aide appears at the door, tells me that the last time they helped him urinate, they put him in pull-ups. That's nurse euphemism for a diaper. Pull-ups. "So he can just go, he doesn't have to use the urinal every time."

She helps him p-e-a one more time, and as she leaves, she grabs my arm and says "next time, just have him use the pull-ups." Use the diaper.

He doesn't know where he is. These two weeks away from the home he's lived in for 50 years have left him untethered. "Where is home? Where is it?" I tell him about his life. "You were born on a farm west of Dodge City. You couldn't wait to get out of there. You left for college on a train, your parents waving goodbye with tears in their eyes. They thought they'd never see you again."

He stops me to say, "My dad, he was a really good man. A good man." We talk about his mother, Wilhelmina. She was a live wire, so like my middle sister. Daddy smiles at that, the vision of his busy little mother and his hummingbird of a middle daughter.

"You graduated from St. John's and went to Washington D.C. to work for the FDA, and then you enlisted in the Army." I tell him about going to Manila, about offloading Japanese prisoners of war from the massive war ships, and how he felt so sorry for them. "When you came back after the war, you had a baby daughter, Karen. You went to graduate school in chemistry, remodeled a huge three story house, and worked full time too." He shakes his head and I think he really remembers those years in Peoria, in the late '40s, early 1950s, when everything seemed possible and he worked 20 hours a day for his little family.

I tell him he went to work for Conoco, that he worked as a research chemist for years and years. He shakes his head and says "I don't remember it. There's something wrong with my brain. It's in a fog and I can't get out of it." I tell him he is very, very smart, that he was known around the world for his work, and he squeezes my hand so hard it feels like the bones will fracture.

"Honey, I have to p-e-a again. I'm sorry." I look at him and I hear the nurse firmly telling me to tell him to just let go. "Daddy, you're wearing a special kind of pants that will keep you from getting wet, so it's okay when you have to go pee, to just go. It will be fine and then we'll change them later. Just go ahead and go where you are. It's okay."

My dad releases my hand and looks at me with sorrowful eyes. He's shaking his head as his face falls. "Oh no, no, I can't. I can't do that," and he starts to cry. I know he remembers this: That his own gentle father, a good man, was incontinent at 65, the result of steroid therapy for arthritis. He remembers the shame on his father's face as he got down from the tractor with wet pants. This he remembers; the painful things he remembers.

I've just told my father to urinate in his pants. In his diaper. He is crying at the very thought of it, his eyes overflowing with tears. He has to p-e-a one more time and the nurses are tired of it.

In an instant, I'm at the nurses' station, where there's plenty of chit chat, not much work going on. It takes a few moments for anyone to recognize that I'm there and by the time anyone speaks to me, I'm past the point of being able to say what I want. I am crying too, just like my dad. I can barely get the words out. We've been awake for most of 48 hours, and this night has been hell.

"I just told my 92 year old father he's wearing a diaper and that he should pee in his pants and now he's crying. I can't do this. You have to help him with the urinal. He can't do it on his own and I can't either and I can't tell him to pee in a goddamn diaper because the very thought of it is breaking his heart. Please help him."

An aide scurries down to the room. The RN on duty comes around and grips my upper arm. If another nurse snatches my arm, I'm going to hurt someone. "This is going to happen. There's something that happens with these people called sundowning . . . " and I stop her. "I know about sundowning. I know all about dementia. It's been 10 years. He wasn't incontinent before he came in here. He has never worn a goddamn diaper." I shake her off and go back to my father.

He's been taken care of and the tears have dried.
"Where's am I?" he asks, grabbing my hand.
"At the hospital, Daddy."
"Where's Pat?"
"She's at home."
"Where's home? Where is it? What is wrong with me?"

I take his hand in mine and in a soft voice, I tell him "It's okay, Daddy. I'll take care of everything. Tomorrow I'll take you to your home and you'll know it when you see it. Just relax and close your eyes and don't worry. You don't have to worry. You're safe and I'm here and I'm not leaving. It will be okay. Just sleep. I love you. Go to sleep."

He squeezes my hand and tells me thank you. "I thank God you're here, honey. I don't know what I would do without you." Half a dozen times tonight he's asked me who I am. Each time I tell him I'm Lynette, his youngest daughter, and it makes him smile. It's nearly five a.m. and he's closed his eyes; he falls asleep at last. His hold on my hand has relaxed and the pained expression has vanished.

I look at him and pray that he's dreaming of home, his home, surrounded by the family that loves him so. I hope he has peace in his dreams, just a little bit. Does sleep take it away? In his dreams, is he strong and healthy and clear-headed? Does the escape of sleep protect him for just a moment from the hell of dementia? Lord, I hope so.

I'm watching my father sleep as he watched me sleep when I was a baby, a small child. All my life he's been there for me, a constant presence, comforting, and safe. I am grateful I can be here for him. I am desolate. I am heartsick. Bereft. I miss my Daddy and he's sleeping right in front of me.

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Sunday, October 04, 2009

overheard at the old folks home

First gentleman: "How's it going?"
Second gentleman: "Horrible. Awful. It couldn't be worse."
First gentleman: "Oh, I'll bet it could be."
Second gentleman: "Do you have a colostomy?"
First gentleman, looking at his watch: "No. But I have the time."

My father is in a home. That's how we used to say it growing up. "She went to an old folks home." It was always the old folks home, never a nursing home, and retirement centers and assisted living centers didn't even exist. Just old folks in their homes away from real home.

Daddy's with the old folks. It's temporary, but spending the last several days with him left me feeling sad and a little hopeless. So many old, old bodies, barely functioning, so many with brains not working except in the most basic sense. It's easy to say at my age that I wouldn't want to live that way. But something makes them cling to life, no matter how wretched the quality.

We had lunch with a man who's only 62. Chemical engineer, worked for Conoco, just like my dad. He is worse than my father at just 62. He is terrifying to see in such a state: withdrawn, nonverbal, unable to respond to conversation. I review the things I know contribute to dementia: high blood pressure, smoking, lack of social outlets, inactivity, lack of exercise, family history. What, if any, of these factors led to his being incarcerated at the home with the ancient ones? He's just 62.

My sister and I can't take our eyes off of him, she with white matter in her brain "like a very, very old woman or someone who smoked for a lifetime." Me with a brain that cycles at insane speeds and veers off onto tangents and can't concentrate on a single thing for more than an instant. Our family history is frightening enough to instill in us both a grave sense of foreboding. Will we last as long as Daddy, who was lucid into his late-80s? Or will we be like aunt Tilly, like cousin Molly, who were mad with dementia in their 50s and 60s? My grandmother had it, a grandfather too. My father's brother is in an old folks home in Dodge City and he no longer knows his own name.

I picture being locked up in a home in Mexico. My Spanish language skills will have vanished with the shrinkage of the frontal lobe that brings on the madness afflicting my people. I imagine that if I get really bad, I could set out on that six month around-the-world cruise I've always wanted to take, and at some point, under a full moon, perhaps in the Indian Ocean, I could leap over the side and let my last breath be the salty sea that I love. Maybe I would have the presence of mind to know when it's bad enough that I should sail out into the Gulf and simply keep going until it's too late to turn around. I don't know that I would have the courage or the consciousness of my condition to decide when I've had enough, but should it happen to me, I pray that I will.

Meanwhile, I don't smoke. I watch my blood pressure, exercise a lot, learn new things. I avoid behavioral ruts, interact with people, and pray. I pray that I can have another 15 or 20 good years; 25 would be a blessed gift. I pray that my father will be able to let go of this life before his suffering becomes unbearable. And I curse the empty space where his frontal lobe used to be as I lie awake at night wondering if it's already happening to me.

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