Dignifying Dementia (17 page)

I bought a recliner, hoping that, if he sat at an angle, he would be able to see people's faces or the television, but he wanted no part of the new chair. Then one day Carrie noticed that Jim was beginning to sit in it, so she moved the chair near the television. Hurray! He sat in the recliner and could see the screen and our faces without our bending over and looking up at him.

Sometime later, the woman with the “nice shoes” gave us a splendid gift – her father's lift chair. Jim sat like a king, ankles crossed in his wonderful electric chair. What a godsend! As his legs weakened and eventually failed him completely, he could be raised to a standing position without our using our arm, leg and back strength to support him. Only Carrie and Sylvia were strong enough to move him on their own.

I never forgot Jim's saying, “Sue the bastards.” Whenever I looked at him, when we put him to bed or tried to find a comfortable position for his head, I was reminded. Why, oh, why had I left him there?

I requested his medical records from the hospital and spoke to our lawyer who took the records and gave them to a physician friend to read. He thought there was a case for negligence. This daughter of a physician was not only losing faith in doctors but was also searching for a medical malpractice attorney. Unthinkable! Finding a lawyer became a challenge, too.

The owner of our favorite seafood restaurant was stunned by Jim's appearance, and said, “I hope you are going to sue. I know a great litigator.” I met with his attorney and gave him the records. After reading them, he said, “What you are going through with Jim's illness is gut-wrenching enough; you don't need to bring a malpractice suit.” I thanked him and phoned another attorney. When this lawyer and his nurse-paralegal asked me to spell Lewy Body three times, I didn't bother to forward the records.

Then I was given the name of an attorney in Atlanta. He read the records and said it was a “state of the art” case. But when he spoke to a psychiatric expert, who said that he “believed they had done the right thing,” the Atlanta attorney returned the records and suggested we find an attorney in South Carolina. I was given the name of another malpractice attorney; he was too busy, but he gave us four more names – one of which resonated with my attorney who by now had said I was “obsessing.” But because he had worked with that fourth lawyer, he made the call and forwarded the records. The attorney read them and called me to say he would take the case. That call was what I needed. Someone had heard; someone believed we had a case. We were going to “sue the bastards.”

Over the years, whenever a letter from the lawyer came in the mail, I opened it and put it in Jim's lap and said, “We are suing the bastards.” Did he understand? I doubt Jim could decipher anything on the page, but I wanted him to know that I was trying to right the wrong that changed the quality of the remainder of his life. I will die hearing him say, “Thank you,” when I told him we were going to the hospital that fateful morning.

Jim did not live to see the outcome of the lawsuit. In the end, there was no trial and no settlement, though the hospital wrote a letter of regret.

After Jim came back from the ACU, someone suggested I consider hospice – for the help they could provide us. Even though I made the contact, when Jim was accepted by hospice, I was a wreck. To me, ‘hospice' meant he was dying – an admission I was not able to accept. Hospice usually accepts patients who are expected to die within six months, and I wasn't prepared for that. In fact Jim didn't die in six months but lived four more years.

Hospice assigned a nurse to Jim. Once every week or so, she came over, took his blood pressure, checked his vital signs and chatted with him. One day when she sat with him, he said, “I am worthless,” and he cried. She tried to reassure him that he wasn't and held his hand.

On one visit, the nurse suggested we try a hospital bed because it would be easier to get him to a sitting position. Through the magic of hospice, they arranged for the bed. Jim sat in it. He laughed, but Jim was unsteady and still ambulatory, and we worried about his knocking into the crank and the metal corners, and the mattress was thin. The bed was out of the apartment in 24 hours – also the magic of hospice. We had already asked a neighbor to sand down the corners on the dresser and bedside table for fear that Jim might hurt himself if he fell.

While we still were working with the attorney in Atlanta, he called to ask that Jim have an EMG, electromyography, a test for the health of muscles and nerves. I didn't want to put him through any tests, but if we were to proceed with the lawsuit, we had to do it. However, once you belonged to hospice, you belonged to hospice. They owned the patient, so I called to check with them and explain that we needed to arrange for the EMG. Jim was instantly discharged. Hospice seemed concerned that this test might lead to more tests, an audit and maybe a refund of Medicare money.

What! I called someone I knew who was the former head of a hospice. I asked her how they could talk about my husband like this. He was not a number! He was a person, my husband, who needed a test. At my friend's suggestion, I called the executive director of the hospice and explained that although I understood organizations, they should consider Jim as an individual, as a person – my ongoing struggle. The director apologized and said, “We will always be there for you, and Jim can be readmitted anytime.”

Prior to his discharge, I called them on two other occasions. I had tried to reach our nurse at 8:30 one morning and was told she was away. I asked if they could send someone else, because Jim had awakened in a pool of diarrhea and was gagging and had the hiccups. Clearly, he was sick. They promised to call me back. In the meantime, Carrie cleaned Jim up; I called a doctor, who prescribed Thorazine. We gave Jim small amounts of fluid. I went to the pharmacy to pick up the prescription and asked the pharmacist what Thorazine was. I had finally learned to ask! The reply, “Thorazine is an antipsychotic.” No! Apparently, one of its side effects is that it stops hiccups. I left the bottle on the counter.

The pharmacist suggested we try an over-the-counter antacid, Gaviscon. While I took it, we didn't even need to use it, because Sylvia had tried her magical ear remedy which successfully stopped his hiccups; Jim ate a bit and appeared to be feeling better.

At 5:00 pm, the phone rang. It was someone from hospice. “Sorry about not getting back to you sooner; we were busy. Why don't you take him to the doctor?” “Thank you very much,” I said, “we handled it.”

The next time I had occasion to speak to our neurologist, I told him about the prescription for Thorazine for hiccups. He said, “It's a good thing you didn't give it to him; it would have turned him into a pretzel.”

I called hospice one other time, because Jim had fallen trying to get out of bed. Hospice recommended that I call Security. As previously when he didn't know his own apartment, the guards were remarkable. They came over, picked him up and put him in bed.

Sometimes, at night, if Jim's legs buckled under him, or he slid onto the floor, and I couldn't get him back up, I called them. While we waited, Jim would lie peacefully on the floor with a blanket over him and a pillow under his head. I told him help was on the way. He would laugh when the guard helped him up and once actually said, “Thank you, Officer.” Security was there for him.

While we belonged to hospice, I was invited to meet their new pastoral counselor, a gracious lady, with that same social work voice. We met for coffee; I felt a whole lot better when she explained I was suffering from “anticipatory grief.” I had a label for my heartache. I had already seen their social worker and his offer of “hugs” didn't help.

To come to terms with my own pain and with Jim's disappearance, I did attend a bereavement group that hospice organized. I had needed special dispensation because Jim was alive, even though he could no longer discuss the day's events, offer his views on local politicians, tell me if he liked my new haircut, say that he needed new batteries for his hearing aids, laugh at my neuroses, or be willing to “smooth my feet, please.” Having to walk into a church for the meeting was difficult, but I was looking for solace. I felt guilty having a living husband, but it helped being around other people in pain.

The other folks in the bereavement group graduated. I didn't. The facilitator expressed her hope that a couple from the group would marry. I finally wearied of the meetings after several men cited Scripture to justify their desire to meet women, and when one young woman said in her first week, “My husband's death was the most beautiful experience of my life.” In week two she was “angry at God,” and in week three she asked, “Is this the proper forum to talk about dating?”

I was walking on a treadmill at a gym when I recognized someone from the bereavement group. We struck up a conversation. He had lost his wife, was feeling lonely, and he admitted he was uncomfortable doing anything on his own. I told him I went to the movies on Fridays, as Jim and I always had, and I said he was welcome to join me.

We met in the lobby of the theatre, went Dutch but sat together. We said nothing to each other and parted after the credits. At subsequent meetings at the gym, I kept him apprised of the latest cultural events. He told me his sister-in-law was in town and hoped I would join them for lunch. I had been invited to a couple of Christmas open houses, but I usually left after about 30 minutes or so, because I knew no one, had few conversational gambits, little holiday spirit and was paying out-of-pocket for Sylvia to stay an additional hour in the evening. Going out to lunch was no problem, so I accepted the invitation to join them and thought nothing of it.

A couple of weeks later, he invited me to be a fourth at dinner – his best friends were in town. I went but felt as if I were being interviewed. Then I received a bouquet of flowers. NO! He phoned to ask whether I would have breakfast with him because his daughter was in town. I declined. Then he phoned to ask whether I would spend the weekend with him. I declined. I thought I had been helping someone adjust to his loss, but apparently I was being ‘vetted.' A few months later I learned he had remarried.

Jim was still alive and at times literally ‘kicking.' We no longer made love. I couldn't remember when our lovemaking stopped, but, once in a while, he put his arm around my waist or suddenly reached out and hugged me, and sometimes at night he held my hand. Once he said, “Is that you, Lovey?” I think he recognized me. My husband was still there.

Using hospice was part of my continuing education.

By the way, whenever I used the word ‘hospice' around Carrie and Sylvia, they cringed. Even though they welcomed the nurse's visits, they didn't feel that hospice was what Jim needed. I think they associated it with death rather than life.

I hadn't moved our records from our last internist, so I made an appointment hoping the doctor might be able to offer the name of someone. When I explained why I was there, no names were forthcoming. Instead, the response was amazement that I was still trying to care for Jim and that his developing aspiration pneumonia would be a good thing.