Dignifying Dementia (25 page)

My classmate referred me to the director of a nursing home in New York City who said he would take Jim when I was ready. To protect our assets, we would have had to simultaneously sell the condo in Hilton Head, the condo in Lenox, buy an apartment in New York, and air ambulance him to the facility – a logistical nightmare. What I learned was no matter how much I loved Jim – like so much else – the decisions would be about money. I was grateful that we had the coverage we had.

One day after bringing more groceries into the house and opening some UPS packages for Jim, I felt a wave of frustration. Like a petulant child, I wanted something for me, so I ordered a couple of books from the Quality Paperback Company.

Another time, I had been walking through the mall and could sense Jim beside me. I heard him say what he had said so often, “Buy something for yourself, Sweetie.” I left without making a purchase. I couldn't think of anything I wanted or needed. And what difference did it make anyway?

But I wanted to spend some money on myself, not on him. I decided what I wanted was an expensive bar of soap. I don't recall whether it was Portuguese or French and whether it smelled of pear or banana, but I remember it cost almost $20, and the bar was so big it barely fit in the soap dish. But it was mine, and I put it in the bathroom that I used, that was almost mine.

Before we had help in the house, I had taken all my clothes from our bedroom closet and jammed them into the closet in the front bedroom, the computer room, the “supervisor's room.” I could tiptoe out of the bedroom, shower and dress without waking him, which was important when he didn't sleep much. One morning I was standing in front of the mirror putting on my makeup, when I heard a god-awful roar like a lion. The sound was right next to me. I was so startled I grabbed my chest. I was terrified. Jim was standing in the doorway – roaring.

That scene might have been funny, but that roaring person did not seem amused. His eyes were wild. I tried to remain calm. I think I smiled and said, “Hi!” He didn't hurt me or continue roaring. He walked away, and I leaned over the sink and let out my breath. I had no idea why Jim roared.

Once we had help, however, the front room became the only space in the apartment that was mine. I came home one day to find one of the aides sitting on the sofa in the little room talking on my extension, so I asked if they all would consider that space off limits. They did.

The rest of the apartment was Jim's. Nothing was ‘ours' or ‘mine' anymore. I shared the house with Jim, the Roarer, and with his caregivers. The kitchen, the bathrooms, the living room, the bedroom were theirs. I had virtually no privacy unless it was in the middle of the night and Jim was asleep. The dishes, the drawers, the cupboards were no longer just ours, even the newspapers. One Sunday morning, I was asked, “Where's Jim's paper?”
Jim's paper.
A friend came by one day and sat on the porch with me for a few minutes. She looked around at the view, at the apartment, at Jim, at the women caring for him, and said, “What a beautiful prison!”

Jim had talked to me at the same time I was on the phone; later, because I was so rarely alone, it was difficult to have a private conversation, though the aides did their best to give me some privacy when I needed it. And when the phone rang, and I answered, it usually wasn't for me. My toilet, my toilet paper, refrigerator, husband, TV, washer, dryer were communal. It was like living in a dorm.

One evening when Sylvia had gone, and Jim was asleep, I stretched out on the sofa in the living room and luxuriated in the moment. I was alone with Jim. It was quiet and peaceful, and no one was being blamed for anything. Heaven! Jim was the patient, the focus of their attention, and I was either interfering or irrelevant. I had wanted him home – but I didn't have a home of my own any more, and that was part of the price I paid.

Late in Jim's illness, I reclaimed the front room, and gave up the car as my private space, the place I had used to talk on my cell phone, open the mail, cry or scream, write checks, pay my bills, and learn lines. I came home. I stopped going to Starbucks or Barnes & Noble to read or write. I filed papers again. I gave up having someone else file medical insurance. I even bought a little TV. I closed the door.

Another cost of Jim's illness was people. As Jim changed, the people who had known him before he became sick changed too. Friends couldn't cope with his condition. True, Jim was not pretty to look at. His lower lip was slack. He was bent over, his eyes were less focused, his tremors more pronounced, his drooling constant and his hands never still.

But he always appeared to enjoy a friendly face, some ‘conversation' and a handshake. A neighbor said, “We don't want to see him like this.” Another old friend said, “It's too hard for me.” Someone else asked, “Is he better?”

And people said remarkable things: “You should never have married an older man.” Someone in our building said, “This isn't a nursing home.” I heard the classic, “God only gives you what you can handle.” All I wanted to hear was, “How are you? How is Jim?” One old friend did come over; she dropped by to say, “Hello,” to smile and to wait for him to smile back.

If you were a social worker, physical therapist, doctor, aide or a nurse with a hard edge, he might not welcome you pleasantly. If you were there to fix the air conditioning or the toilet, if you were the plumber with the friendly smile and a great handshake, or the neighbor who said, “How are you doing?”, Jim would muster a wonderful smile and say, “Still working” or “I'm retired.”

When Father McCaffrey retired, I had gone to see another priest, who recommended I read Rabbi Kushner's book,
When Bad Things Happen to Good People
. Father West was a bright young priest with a huge parish. Despite his commitments, he came by to see Jim. He knelt by his chair. Jim was focused on the Land's End catalog he was shredding and didn't look up. When he finally did, he smiled at Father West who had deliberately worn his collar. Jim seemed happy to see this stranger. Father West spoke about having visited Ireland and then blessed Jim and recited
The Lord's Prayer
. Jim's eyes closed. Who knows why? But after Father West left, Jim began to ‘sing.' It went something like “doo, doo, doo, doo.”

Jack Brennan, a retired physician, would see me in the parking lot and ask, “Is there anything I can do?” I always said, “I wish.” He asked if he could come over and visit. He did. He sat with Jim and held his hand, while Jim muttered unintelligibly and incomprehensibly. Jack hung on Jim's indecipherable words. Before he left, Jack looked at me and said, “This means more to me than it does to him. Thank you for letting me come up.”

Jim died on January 6, 2006, officially at 10:15 am. His skin looked jaundiced, and he emitted an ugly gag. No Hollywood death this. Dr. Brennan saw the horror on my face and said, “Jim is already gone. It is his body's last gasp.” It was over. Jim was no more except in my memory and in my heart.

His final days began on Christmas Eve. The women had left early because of the holiday. Jim was sitting up in bed. I had defrosted a favorite dish: lobster wrapped in sole. I fed him and went back into the kitchen to clean up. When I came back into the bedroom, I saw he was drooling black liquid. Despite the fact that it was Christmas Eve, I had taken Jack Brennan at his word and phoned him. He came right over and explained that it was bile. I asked him what I could do. He said, “Jim's system is breaking down.” I still didn't get it. Jim was peaceful. Dr. Brennan left and said he would be back in the morning, Christmas Day.

I cleaned Jim up, and we lay down to rest. As so often before, I was half awake through the night. But there was no repeat. Dr. Brennan came back in the morning, but Jim no longer wanted food. When we put a spoon to his lips, his mouth stayed closed. His eyes were closed too.

Dr. Brennan called our internist, and they arranged for a hospice nurse to come in – a different hospice.

However, there was miscommunication, and a nurse from the home health division came over instead of from hospice. Because Jim had not eaten anything since the lobster, I asked if we could give him some fluid with an IV. We did.

Jim had one IV. Later that afternoon, he opened his eyes, smiled and began to twist the dial of his little portable radio. We were so excited. I remember calling Carrie on her cell saying, “He's back.”

But it wasn't to be. The nurse from home health said, “Now he needs to take fluid on his own. Every 15 minutes give him some fluid.” Jim slept through the night. Now barely wakening in the morning, there were to be no more IVs. “Come on, Jim.”

When one of the aides arrived the next morning, she looked angry. She had talked to another aide and they were considering taking Jim to a hospital, because they thought I was killing him. I was stunned. The next day I showed her our advance directives. I showed her the date, 1993, and Jim's signature. I said, “I probably shouldn't have even given him the first IV.”

After that remark I kept it together long enough to say, “It is your job to get fluids down Jim every 15 minutes. I am going to the supermarket to buy consommé, ice pops and Jello.” I raced down the stairs, a scream in my throat. My husband was dying, and one of his caregivers thought I was killing him. Thankfully, I bumped into Dr. Brennan as I was running to my car. I didn't even say, “Good morning.” I looked at him and blurted out what had just been said to me. He advised me to try not to take what had been said to heart.