A few weeks before my father passed away, only days after he had entered the best nursing home our limited budget could muster, I went to visit him, and something was wrong. Very wrong. He wasn’t there. I mean, his body was there, but HE wasn’t.
He had been diagnosed with advanced cirrhosis of the liver and late-stage dementia. His poor upper tummy was all distended, but he still looked fairly good, and I don’t think he had been drinking for several years. It was the 30 years of heavy drinking from the 1960’s to the 1990’s that did him in. You know, just the time I was growing up.
He had mostly stopped talking by the time he was in Duval Gardens, with the big sitting room with a huge picture window with deer and oak trees outside. He hadn’t said my name in at least 6 months. He would, however, sometimes recite perfect T.S. Eliot:
“I grow old . . . I grow old . . .
I shall wear the bottoms of my trousers rolled.
Shall I part my hair behind? Do I dare to eat a peach?”
We had passed the point where he told people we knew that I was a just a very nice lady friend, but no, I wasn’t his child. He hadn’t had any children (which, in fact, was true…but, it was too complicated to explain to the nice geriatric psychologist).
Aricept just seemed to make things worse. He could remember only ancient bits and pieces. His boyhood in Indiana. The country store he ran with his mother after his father died.
But he loved the apartment that I had found for him, his “high place,” a subsidized Section 8 senior housing unit on the 13th floor. It had a panoramic view of trees and the river to die for, even if it was infested with strange little bugs. The many older women living there (a jolting reminder that we women do generally live longer than you men) doted on him, and made my guilt at not truly going every day to see him a little less pronounced.
I moved him from the state of my birth to my state of my adulthood when he stopped being able to pay his bills. I had been helping out monthly, and started to notice the checks going uncashed. I called his landlord, who said, “You have to do something. He can’t live alone anymore.” So I convinced him to come to live by me, and I’d bring him meals and help him take care of all that boring money stuff. He said, in a small relieved voice, “Deal.” and then he added, “Couldn’t I just come live with you? You know, in your house?” And having been through the issue with my husband, and because of my own past experience with him, it was non-negotiable. “We just don’t have the room, Dad. I found you a place. A great place. It’s downtown. It’s right next to where I work. We can have lunch every day.” We picked through his stuff, kept the best of it, and got an estate broker to sell the rest. We made $800 on what was left. We made it on his Social Security and Medicare and Medicaid alone.
He lasted a little over a year on his own in his “high place,” with lots of community supports, and his favorite material items. I tried to encourage him to write at first, but it was beyond him to put the pencil to paper, but for labeling items like “bread” and “banana” so he could remember what they were, and when to eat. It was around his second Christmas that the belly started to swell, and the nice geriatric psychologist said at his regular appointment that I had to take him to the hospital directly. Right then. It was an emergency.
I remember that drive. He was so quiet. We were both so quiet. I didn’t think he understood what was happening. Where he was going. But he was there. He was still inside there, smiling at the passing green trees.
They drugged him up so much in the hospital, and he was already so disoriented, that it took him several days after being moved to the nursing home to be able to see me again, and smile, and ask when he could come home, back to his “high place.” The doctors had told me he had only weeks, maybe days now. There was nothing they could do but try to make him comfortable. It killed me to tell him he wasn’t going to be going back there, to his “high place,” again. Maybe I should have just lied about it. I learned that when taking care of someone with dementia, it’s often easier to redirect rather correct, to live with many small, pure, kind, white lies.
The next time I came back, he didn’t recognize me at all. He sat in the beautiful sitting room overlooking the oaks and said:
“They’re old, they’re old, they’re all rolled gold…”
There was my jazz loving father, riffing on The Love Song of J. Alfred Prufrock. I’m not sure that he didn’t recognize me that time. I think he was mad at me, rather, for not taking him home.
But the next time, the next time was the most troubling. Because the next time, I swear, he wasn’t there at all. He was not in his body. His eyes were absolutely vacant. Glassy and brown, like a stuffed toy animal. Like a doll. He was just sitting on the edge of the bed, in someone else’s clothes, a sports t-shirt, something he would never have worn. He always wore button down shirts and tweed jackets. And ties. Sometimes the same ones for days on end, but he trimmed his nails and combed his hair and always kept himself dapper.
This time I was totally spooked. I hadn’t had the heart to go back to his apartment after the hospital for some reason. I didn’t want to acknowledge we were reaching the end. But I knew I had to go. I knew, somehow, he had gone back to his “high place,” and that if I didn’t do something, he was going to hold on there, as long as he could. Even if his body would not go with him. Stubborn man.
So. There I stood. On the 13th floor of the Residential Tower. In his studio apartment with his most treasured stuff. Talking to him. Because I knew from the moment I opened the door, he was there. Not his body, but his spirit.
“Dad, Daddy. I’m sorry. I know you want to stay. But you can’t stay here anymore. You’ve got to go back to your body, Daddy. Your body needs you, Daddy. There’s nothing left for you here. You’ve got to let go of this. You told me yourself this stuff doesn’t matter to you anymore. Listen. I love you. I want you to come with me. Let me take you back there. Back to your body. It won’t be long now. You can go on, you know, to the next place. You’ll probably see Kathryn there, and Julia, and your mother and father, and your grandmother, and the brother you lost when you were a baby…”
I said this as I walked around the room, in the twilight orange and purple light, touching the things that he loved: a photo of his beautiful black lady companion on a beach; a wood carving of a bird; a Mexican terracotta figurine; books of poetry by Rainer Maria Rilke; photos of his trip to China; what was left of his once massive record collection.
“Come on now,” I said, opening the door, ushering him through with my hand. I swear I felt him move beside me.
I stopped to lock the door. And he stayed with me.
We got on the elevator. I held his hand. But there was no one there.
I had tears in my eyes as I walked with his spirit to my car, my gold Honda accord, which I still have, and drove just today…thinking of the time I patted the passenger seat, knowing his spirit was right there with me, silent, for the drive, the long sad drive back to the nursing home. I felt so close to him then, on that ride.
I negotiated with him quietly in the nursing home parking lot before walking into the grand front entrance, all pilars and white colonial residential, trying so hard not to be the place it was, a place where people come to die and be forgotten.
But I will not forget.
When I walked into the room where his body was, it was almost as if I could see the spirit reenter him. That body, that empty thing, finally stirred with recognition. Not for very long, just enough for eye contact and a small fragile smile.
Somehow, he had aged impossibly more while his spirit was gone. He was pulled up in the bed like a child now, hugging the covers with his fists. His breathing began to get shallow. I turned on some classical music, the kind he liked, and stayed with him a long time that night, patting his hand, rubbing his forehead. The nurse came in to take his vitals. His breathing was so very shallow then, and quick. My mother’s was the same way. Three years earlier. To the very same day.
She said, “It won’t be long now,” with a knowing kindness. “You look tired. It’s late. You should really go home now. I’ll call you if there is a change.”
So I told him goodbye and I loved him so much and thanked him for everything he had given me throughout his life. I said he should go ahead and let go…he would find the people he loved waiting for him when he did.
By the time I got home, the nurse had called to tell my husband he had passed.
I turned right around to see for myself, angry at myself for not holding on those last few minutes to be there, by his side. My husband offered to drive me, and I was glad for his company.
But it is so shocking, that thing about death. Seeing the body. It’s important, I think. If you can do it for the people who are important to you, you should.
When I got there, his spirit was truly and finally gone.
Except not totally. For some reason, I have never parted with his ashes. They are in a very lovely bluegreen vase I found for him, on my largest bookshelf, in between the copies of the books he wrote, and the books he loved. And he seems quite content there. To live with us in our house.
I don’t dream of him often. But sometimes I do. He seems to be getting younger, and more alert, as time goes on. I am hoping someday, when he is ready, that he will go ahead and make the journey to the next place, and find out who is really there to meet him.
And when I’m ready, maybe I will let him go.