Dignifying Dementia (11 page)

But I was pragmatic enough to understand that, if I became seriously ill or died, Jim would need care, so a nursing home still might be in his future. Periodically over the years, I visited different facilities. All but one experience left me feeling uncomfortable.

In one instance I made an appointment, and the interviewer failed to keep it, phone to cancel or reschedule. One Sunday, I deliberately dropped in on another expensive nursing home and waited patiently while two women behind the reception desk sorted out their personal business. Finally, one looked over at me and said, “What do YOU want?” I asked, “Would you show me around?” The two women debated with each other about which one of them would take me on my tour. Once they decided, and we began to walk around, I saw people in their wheelchairs in corners, aides talking to each other over the heads of the residents as they fed them; the subject matter was not the patient. I thought that if they were this ungracious to me – cognitively unimpaired – how would they treat someone helpless and dependent, like Jim. I thanked them for the tour and their time.

Jim and I drove together to another facility that specialized in memory care. I had called ahead. When we got out of the car, the marketing director raced out to meet us, put her arm around Jim, pressed her hip to his and walked him around the building. We looked at the fireplace, the flowers, the glazed eyes watching the TV, the card players, and thanked everyone and left.

What Jim remembered often surprised me: when we went back another time, he climbed back in the car as soon as he saw the same marketing director.

From time to time, I visited different facilities. The quality changed constantly. If the state cited them, they improved. Or if a head of nursing resigned, a facility might deteriorate.

I revisited the nursing home in which my mother died. This time the corridors smelled of urine – not what I expected from previous visits.

I realized I had to stay healthy. Determined to find a place, I visited the facilities in the area, and one day I found a small, loving nursing home and felt secure that it would stay that way and be perfect for Jim should something happen to me.

Nursing homes are institutions. They have to feed, bathe and care for their residents on schedules. No federal law governs the ratio for care, but one aide to eight patients was typical. The given is that patients need constant and differing care, and problems and emergencies happen.

I began to hear stories about nursing homes: the one about the Parkinson's patient with the severe tremor whose food tray was put in front of him; unable to feed himself, he lost 15 pounds in two weeks. Or the one about the frail patient who died from a concussion after two aides dropped her, while transferring her from the chair to the bed. I heard about bedsores out of control, fraud, theft, broken bones unnoticed and dehydration. In essence, someone has to be there to check. Would Jim have been able to use a call bell?

Although our internist had referred us to Rehab, and the suggestion about a nursing home might have been well-intentioned, I was still reeling from, “It's over. Put him away.” I was not writing Jim off. I was writing this physician off. But rather than leave immediately, I decided to shop for a compassionate internist with good communication skills, who believed that Jim deserved to be treated with dignity in an office that wouldn't require us to sit for a long time – something Jim could no longer do.

Because my search was slow, we saw our current internist again at the hospital. Jim had some rectal bleeding again, and I had taken him to the Emergency Room; once again, he was admitted. This time, it was simply bleeding hemorrhoids, but I said I was staying overnight in his room. The next morning when our internist made the rounds, Jim grinned and said, “Good to see you again.” The doctor smiled back, thanked him and, walking out of the room with me, said with amazement, “He's still there!” “Yes,” I said, “he's still there.” I refrained from saying what I wanted to say, which was, “It's not over!”

To find a more empathetic physician to meet my needs and Jim's, I asked for referrals from nurses, doctors, dentists, and pharmacists. Our internist seemed to have made a decision about Jim, and, therefore, as far as I was concerned, about me as well. After all the doctors we had seen, all the drugs we had tried that had caused problems, I was no longer looking for cures or treatments for Jim's condition. And, if indeed he was suffering from Lewy Body Dementia, there were no cures, no treatments, but at least we had a caring neurologist in Charleston to phone. Painful as it was, I accepted that nothing could be done. The disease had him in its clutches. What I could do was keep him comfortable, safe and well-fed. I could keep him as healthy as possible, while his body and mind were being destroyed. But should something dramatic happen, should he fall and hurt himself or break a bone, or develop some other sorts of symptoms, I wanted someone local to turn to, and I wanted to have the same doctor for myself. To understand me was to understand that Jim was part of my life. I began my search.

I was referred to an osteopath. I explained that I was looking for a physician for myself and, if need be, for my husband. I described Jim's condition. He said, “In Canada, when people can't feed themselves, they are allowed to die. You aren't giving him a flu shot, are you? You aren't giving him vitamins, are you?” I said “No” to the flu shot question and avoided answering the one about the vitamins.

I left his office and got into my car. Not only was the disease a “bad hand,” I also felt as if we had no one on our side except our neurologist two hours away. Did medical folks believe you stop loving or wanting to help someone because they have a dementing illness? Jim was still there with blinding and, at times, hilarious glimpses of the man he used to be.

I phoned the doctor of Integrative Medicine we had seen in New York. We had met her when we were living near the city; at the time, I still hoped that nutritional changes might help him. Vitamin B? Vitamin D? So, here I was, sitting in my car in Hilton Head, feeling lonelier and lonelier. I was losing Jim, and I felt alone without support. No, I was not giving him a flu shot, but, yes, I was giving Jim vitamins and protein powder – for his skin – to keep him healthy and help protect against pressure sores.

The doctor returned my call within minutes. I told her what the osteopath had just said to me. She was angry, “It is NOT your job to be the grim reaper! Jim will die in his time. If it makes you feel better to give him vitamins to make him more comfortable, then do it.” My tears were no longer from frustration; they were because of her kindness. Why did it seem so hard for so many other members of the medical community to understand that I wanted the best for my husband, regardless of his condition? She did.

I was referred to yet another osteopath. Once again, I told him about Jim's condition and explained that I was shopping, but this time I blurted out, “I need to know if your compassion was removed when you went to medical school?” Unphased by my bitter remark, he said, “Jim is preparing to meet God.” I listened and thanked him for his time.

I met another internist who quoted Scripture. I said, “Please, I am not a religious person.” He said, ‘It doesn't matter. I am.” He continued his recitation from
The Bible
. I thanked him as well.

These physicians made our neurologist unforgettable by comparison. He had treated Jim as the man he used to be and me with respect. He was sensitive to the tragedy. He was kind. He returned my phone calls. If Jim was constipated, which he was; if his legs wouldn't support him, which they didn't; if he suddenly walked tilted to one side, which he did, the neurologist would take the time to make a suggestion, knowing that what he was saying might or might not work.

During my search, I was reminded of our doctor's words in Chatham in the 1980s when he had decided to give up his private practice to go into research. We liked him and were concerned about having to find another physician of his caliber. He said, “Don't worry. The medical schools are turning out great technicians.” They were technicians, yes, but not always empathetic communicators.

Eventually I found wonderful physicians, but it took time. One was our dermatologist. Jim had fair Irish skin and frequently had been treated for precancerous and cancerous lesions. The dermatologist scolded me for bringing an agitated and confused Jim to the office. “I can go to your home. I live nearby. Next time, call and say that you need me to come by.” I couldn't believe it. I called, and he came – many times. We met an optician who offered to make a house call to adjust Jim's glasses. He did. Our dentist came to the house to check Jim's teeth when we found he had lost a crown.

Eventually I was referred to an internist who took care of my health. She honored my decision to keep Jim at home and offered to help in any way she could. Rather than advising me to ‘put him away', she applauded my strength for keeping him at home.

Pharmacists became allies, too. For example, when Jim had relentless hiccups, one pharmacist suggested shifting his position. Whatever his latest symptom, I could ask for advice and they gave it. I walked into the store one day and broke down. The pharmacist said, “You have made it this far. You can do it.” What a difference it made when someone said, “Hang in there,” rather than “What's the matter with you? Put him in a nursing home and get on with your life.”

There's a kind of release and a kind of torment in every goodbye for every man.

C. Day-Lewis

Four years after Jim's initial diagnosis, I was exhausted. Nothing in our lives was normal anymore. If I ran an errand by myself or went to a yoga class, I would have one eye on my watch, or would roll up my mat halfway into the practice. If I did stay through a class, I would be asking myself how this illness had happened to us and desperately wanting my old Jim back. When I left him alone at home, I was always in a hurry, fearful that he might become agitated or confused; I wasn't concerned about his hurting himself or wandering off.

Several times I had returned home to find him holding his head saying, “I'm going to my funeral,” or staring out the window looking for a car, for his car or for a red car. Because he had difficulty concentrating, he no longer wanted or needed time ‘to read.' Hoping it might help, I bought CDs of poetry, and I ordered a tape player and audio books for the blind. Not only was he not interested, he was unable to push the oversized buttons on the machine; he had nothing to keep him occupied.

He was confused, and I was on a short leash and irritable. A telemarketing call at the wrong time, a brief wait at a checkout counter, a letter addressed to someone else – everything annoyed me out of proportion to the event.

It was easier to run errands together, but that was problematic, too. If we drove to the bank or to the store, he reprimanded me for driving in the wrong direction, just as he had on our final trip south. He tried to open the door of the car when it was in motion, or to unbuckle his seatbelt when I came to a stop sign or red light. I was on guard and on edge.