Dignifying Dementia (18 page)

I moved our records.

Six years after Jim's diagnosis, we had two devoted aides in place, but we needed a backup, because they were not always available. Carrie came Monday through Friday during the day, and Sylvia arrived at the end of the day to give Jim his dinner and put him to bed. She worked some weekends, but two people were not enough. And Bertha was gone.

We searched for people in case of emergency, for holidays, for difficult days of the week. It was an onerous task, and we needed someone who would work well with Sylvia and with Carrie. So we looked again, and Carrie or Sylvia worked with each new person to explain Jim's routines and care.

I was referred to an aide who was studying to be a Licensed Practical Nurse (LPN). She had fixed views of her own about how to care for Jim and did not work out as part of the team. Another thought I needed a vacation; six weeks later she phoned out of the blue and told me that I should not leave my husband in the care of strangers. Another made it clear that if she did not like the job, she would not stay. She arrived an hour late on her first day, maintaining it was my mistake.

I told another aide I would pay her a fee to ‘shadow' Sylvia for a few hours. She came; she shadowed. It was Valentine's Day, and I happened to have a little charm bracelet to give her daughter. Everything seemed to go well, but then she called and said I had promised her a different rate. I had told her two rates: one for the time she shadowed Sylvia and the other when she was on her own. Feeling I was being called dishonest, I figured we were getting off to a poor start and did not pursue her returning.

We tried another aide. She seemed sweet and enthusiastic, but she was in such a hurry to get to her second job, she rushed Jim from his recliner to his chair. Jim always needed to be told what was happening. Putting him to bed typically took 10 to 15 minutes. She tried to accomplish it in less time, but by hurrying she lost time. Jim became livid. He said, “Sit. Stay there.” Even though he was in his chair and his limbs were stiff, he grabbed her hair and kicked her as she leaned down to adjust his feet. Then his hands went for my throat. I moved – quickly. I felt sorry for her. She was in tears. After he calmed down, we got him into bed. She was late for her second job and decided against returning to us.

Eventually, we met Denise, who came on those afternoons when Sylvia couldn't come, but she was older and not as strong, so we usually did the transfers together. One weekend she fell at home and broke a rib, so while she recuperated, once again we had to keep our eyes out for someone else. Occasionally, I would recruit a friend just to come over to help me get him into bed. By and large, we had a team, but it was nerve-wracking, because other people's schedules seemed as fragile as Jim's health was.

Once I felt secure leaving Jim, I knew I needed to find ways to distract and help myself. The support groups hadn't worked, and hugs and labels weren't meeting my needs.

I needed a therapist or counselor to talk to about my fears – my life. I needed to find someone to whom I could express my feelings when Jim said, “You deserve better,” when he managed to put a knife in a bottle and painstakingly spread mayonnaise on some bread, when he held open a Ziploc bag I gave him and let me fill it with Fig Newtons, or when he put a dirty dish in a cabinet or actually walked toward the sink with a dish in his hand.

Just as it had been when searching for doctors, aides and lawyers, it took more than one visit to find the right person: therapist, psychologist, psychiatrist – it didn't matter. I needed to talk. I saw a psychologist. We talked about my getting involved in tennis and tennis tournaments and the frustrations of dealing with insurance problems. I didn't play tennis and had little interest in insurance companies.

Another counselor was empathetic and generous. I sank into the pillows on the sofa, and was encouraged to have a glass of wine in the evening, to take luxurious baths and long walks on the beach; I barely had time to brush my teeth and shower.

Another therapist leaned back, hands on head, feet on a coffee table, and “concurred” that support groups weren't helpful. I sensed we needed more room in the office for our respective egos.

Eventually I met a calm, empathetic, practical psychiatrist. At our first meeting, I asked, “Do you still do ‘talk therapy,' or do I have to take drugs?” He grinned and said, “I think I still remember how talk therapy works.” He helped me hear Jim's voice. He frequently asked, “What would Jim have told you to do?” Jim believed in me. In the past when I was filled with self-doubt before I gave a talk, I heard Jim scold me for my feelings of inadequacy. “Of course, you can do it.” But now, did I even want to?

Periodically, my psychiatrist offered me antidepressants, like Celexa or Lexapro, and I humored him by trying a pill or two, but Jim's experience militated against any affection for drugs, and I stopped immediately if headaches began, which they did. However, when he recommended fish oil for depression, I took it. I avoided prescription drugs. I tried Sam-e and melatonin. If I had known some Native American dances or had voodoo charms, I would have tried them, too.

I continued taking yoga classes and trying to “breathe.” At times they worked; at other times I just curled up in a ball on the mat.

I tried acupuncture. The acupuncturist put some needles in my hands and in my calves, and I felt an electric shock from one foot to the other. I felt stronger when I left his office. Placebo effect? Who knows? Was I better able to accept Jim's outbursts, his shredding, lifting a spoon to feed himself, taking a crust of bread and using it like a spoon, putting the handle of a fork to his lips and sipping from it, or trying to eat a napkin? I went back for more.

We took Jim to the acupuncturist to see if it might help his neck. But getting there involved all the obstacles that leaving the house required. Would he leave, would he get in the car, would he get out, would he enter the hallway to the office? Sometimes he did, and he would take off his hat and glasses slowly and extend his hand and say, “Hello, Richard.” Whether it helped or not, there was no way of knowing, but Jim allowed ‘Richard' to massage his neck, and, afterwards, we would leave for lunch – IF all the variables worked in the reverse order. Finally, Jim wouldn't leave the apartment, so I continued the treatment on my own.

“What a beautiful day!” the acupuncturist said. “I hear that it is supposed to rain tomorrow,” I said. He grinned, “All I care about is today.” He encouraged me to read Tibetan Buddhism; I did. I read the Dalai Lama and Deepak Chopra. I read books about feng shui, which prompted me to buy an uneven number of fish and put purple in my prosperity corner.

I called a psychic. The woman I spoke to told me I needed a break, a vacation, said I would survive after Jim's death, said his death was related to his chest and was connected to the number eight. She amazed me when she said, “Jim had four children.” She said I would love again, live in the Northeast and cross the pond again. A tribute to my psychiatrist: when I told him I had spoken to a psychic, he never laughed or suggested I be committed. Instead, he said, “Different people have different insights.”

Thinking that my educational experience might be of some use and that I might find something more meaningful to do, I went to see the headmaster of a local school. Part-time consulting? We talked about Yeats, Ireland and his desire to retire to a foreign country. Thirty minutes later, as I walked down the path, I could hear Jim laughing as he said, “Sweetie, what were you thinking?”

I spoke to a medium. She told me I should trust my intuition and accept the fact that, until a certain date, I would have no control over my life. Oh, and my parents said they “loved” me from the other side.

I saw a chiropractor, not for my spiritual well-being, but for the pains in my neck which were severe. She said, “You will be in a wheelchair, if you don't go to Duke!” My psychiatrist suggested I see a rheumatologist instead, who dismissed the “wheelchair” notion. He said, “Get a weekly massage. If you are in pain, come back and see me.” I didn't see him again and found affordable massages at a local college. I also found another chiropractor, who adjusted my back.

I walked on a treadmill at a couple of different gyms because there were virtually no sidewalks in Hilton Head and walking on the beach was too painful a memory.

I discovered comfort food. At first it had been difficult to eat when I was taking care of Jim on my own. Later, I discovered carbohydrates: bagels, cookies, Szechuan noodles, lowfat Oreo yogurt with hot fudge, frappucinos, quesadillas, pasta. Broccoli and salads were for happier times.

I saw a rabbi, who said, “I can't do anything to help Jim.” He spoke of the importance of family and encouraged me to read
Illusions
. I bought the book and read two pages.

Of course I still had to buy groceries and supplies, have the car serviced, phone the plumber, go to the bank, but with good, loving caregivers, I was no longer needed the way I had been. There was time for me – time I didn't want and didn't know how to use. I had always been happier working, and here I was on Hilton Head, and I didn't play tennis or golf and had no inclination to learn. When I had become restless in the past, Jim had always said, “Relax. Read a book.”

Thankfully, I had lunch with my friend with the “nice shoes” and told her that I needed something to do to feed my mind and my soul. She found me a part-time clerical job with a technology startup – which eventually failed. I made a few dollars, wrote and edited some articles and fundraised for them. I welcomed the distraction. For a few hours a week, I could change the subject and not think about home. At the office I was surrounded by an eclectic, hardworking, intelligent group of people, who thrived on one-liners and
double entendres
.

Some days, Carrie drove Jim to the office, and we ate lunch together. When I introduced Jim around, he managed to say, “Hi.” Other days Carrie drove him to the beach, around the island, or to Wendy's for a stuffed baked potato. If I worked until 5:00, I hurried back. But one day, Carrie said, “Come home late. Don't come home at 5:00.” I ignored her request until she repeated it more forcefully.

We picked a day; I dawdled at work, but I had nothing left to do. It was 5:15. I called home and asked Carrie, “OK, now what do I do?” I had no idea what to do with myself. She said, “Don't come home.” I stood in the office and looked around. What could I do? I hadn't planned anything. I couldn't create work. Finally, I had a brainstorm. I could drive to the Chinese restaurant, buy some take-out and bring it home. The drive would be 20 minutes each way, and, if I didn't call ahead, I would have to wait for the order. I drove to the restaurant, ordered some food to go, sat down at a table and drank some iced tea. It was well after 5:00 by now. I paid for the food, got back in the car and headed home. I walked into the apartment a little after 6:00 pm. I said, “Carrie, how did I do?” She laughed at me, and said, “I am proud of you.” I went back to the Chinese restaurant the next day because I realized how relaxing it was to sit and eat. This time, I ordered spare ribs and ate them there while I read.