Dignifying Dementia (23 page)

One morning, an aide told me that I had better find Jesus. If I suggested that we needed to find backup help, then I was “threatening” or “underhanded.” I wasn't changing Jim often enough at night. Carrie wrote a note to me and Denise, in which she was angry at us for our inability to take care of Jim. She wrote, “He can't defend himself when it comes to certain things but if it's not right I can defend him and I will. It's not fair to him.” She wrote that note out of love for Jim. She addressed it to: “DENISE and ET.” The lines among us were blurring; the boundary was no more. I had become another aide and a poor one at that. I was neither Jim's wife, nor their employer. Jim was always the employer – the boss.

I looked at the calendar with the schedule we maintained only to discover that hours were adjusted without my knowledge. One person announced that she had changed her hours permanently; one of the others would be coming earlier to cover. They arranged coverage among themselves because of a doctor's appointment or a family reunion. While I was delighted they were that responsible, they no longer considered that I needed to be, or should be, informed.

Nor, apparently, was there a need to phone me if someone was running late. I actually asked the newspaper delivery girl to wait with Jim one morning. I was teaching a course at Parris Island and was on my own; my calls to cell phones went unanswered. Was someone in an accident? Had a car broken down? Was it traffic? Meanwhile I made calls to arrange coverage. It worked out, but it was an extra strain if I had to be somewhere at a specific time.

I learned of the death of a member of Jim's family. When I told an aide, she said she already knew. I was dumbfounded. She had received a phone call from a family member and was told not to tell me. SHE GAVE HER WORD. She never told me. I was the odd man out. The morning I said I wasn't feeling well – it turned out to be a kidney stone – it was simply, “You had better see a doctor.” Jim was the person they adored, for which I would be forever grateful, but feeling like a pariah in my own home was hard to take, particularly when I was expected to produce.

There were human problems: mood swings, health problems, cramps, PMS, increases in gas price problems, car fires, need for new places to live, doctors' appointments and money problems. We became one big dysfunctional family with one focus: Jim.

And there was sibling rivalry, too. Who did Jim love more? Who got a bigger greeting from him? Whose hand did he hold longer? Where did that scratch come from? Who was too rough? The log would say, “Jim didn't want to let go of my hand.” Or “Jim said, ‘Where have you been?'” Or “Jim didn't want me to go.”

Because they loved him, because they took such good care of him, because I had gone through more than 20 people with little success, if someone was short of cash, I paid in advance. I gave extra cash when the price of gas went up. I helped someone find a new car, an apartment. I gave gifts, raises, bonuses, remembered birthdays and holidays – still my pre-nuptial job. But I drew the line at co-signing a loan.

I cannot find the words to express my gratitude for their love for Jim, but on some evenings I had to wade through two or three people who were sitting on the floor by his chair to be near my own husband because someone would drop by on the way home from another job. They had lived through four years of his illness and loved him, but I had lived through his illness for almost nine years, and I knew a tad more than they did about who Jim had been before. Like Rodney Dangerfield, I wanted some respect.

During one of my darker moments, when I was surrounded by women with strong personalities and equally strong opinions and was about to go around the bend, I decided to audit a course offered by the local college for people who wanted to learn to become certified nursing assistants (CNAs). By taking it, I believed I would learn to care better for Jim, to understand what CNAs were taught and to meet other CNAs, if I had to replace a member of the team. The insurance company picked up the tab.

The evening of the first class, when the instructor, Diana, started, I thought, “Oh, Good Lord, how am I ever going to get through this?” My classmates were young African-American women seeking to improve their job opportunities in hospitals, nursing homes, assisted-living facilities or private homes. There was one middle-aged, white man, named Rick, who seemed to know the instructor, Diana.
Did I look and feel as out of place as he?

Diana began by reading the riot act to us. “If anyone is late, you will be locked out of the room.” She showed us where we could go for a snack and added, “If you come back from the break late, the door will be locked. If you don't make flash cards of important words, you will be out.”

I couldn't believe what I was hearing.
How was I going to survive this class!
I was being treated as if I were in junior high. I began to observe the class rather than be a participant. How could I be so out of touch with the education process? I didn't want to pay back the insurance company the $240, and I had told Carrie and Sylvia I was taking the class. They had congratulated me, and the college had accommodated me, as had Diana. I had to stick it out. So, I did as I was told. I underlined the sections of the book I was supposed to know for the licensing exam that I was NOT taking.

The first week Diana gave a pop quiz. A classmate had gone to the bathroom. When she returned, Diana told her, “YOU failed.” Why? She wasn't there. I did too, because I only had a pen not a pencil. I was redeemed however, because I was wearing a watch.

Diana was determined to instill standards of excellence. Everyone was expected to be prepared all the time. She drilled us. She praised. She scolded. She taught us to use gait belts, to take blood pressure. If we forgot to put the rails up on the sides of the beds, we were ordered to sit on the floor. We were sent to the back of the line to “Do it again,” if we forgot to sing “Happy Birthday” three times when we washed our hands in the classroom sink, or if we touched the knobs with our clean hands. The class was being offered near the Marine Corps Recruit Depot at Parris Island; I thought I had missed the turn. But beneath the drill instructor demeanor was a huge heart.

One day Diana ordered us to bring our dinners to class – not surprisingly, they were all very different. She then divided the group into two: patients and aides. What she did to the patients! She put cotton over their eyes and ears; she duct-taped and gait-belted limbs to twist them. Rick was my blind patient, with cotton in his ears, so he was also deaf. He had on a straightjacket and was put in one of the beds in the classroom. A woman was made blind and deaf and tied into a wheelchair and then rolled deep into an alcove.

Then Diana announced, “No one is permitted to talk.” She told us to come over to where all the dinners were lined up on a table. She randomly plopped food on the paper plates and handed us a small cup of liquid.

Then she repeated that there was to be “No talking.” She added, “I want you to ‘shovel' the food into your patient's mouths and NO talking!” I gave poor Rick his cold ravioli and peaches; he seemed OK, but when I put the drink to his lips, he grimaced. When we were finished, Diana told us to release our ‘patients.' Then she asked them how they felt.

No one was happy. Everyone expressed frustration or a sense of helplessness. And the woman in the wheelchair in the corner? She said she felt “terrified.” “I thought everyone had forgotten me.” By the way, what was the drink? Day-old, cold coffee!

Her lesson was loud and clear. Diana said, “You talk to your patients. You tell them what they are eating. You reheat their food, or if they don't like it, you get a sandwich from the kitchen. You pay attention.” I will never forget her class. I subsequently learned that, during the clinical part of the course that was held in a nursing home, Diana's students found a patient with a broken clavicle.

One evening at the end of class, I got up the nerve to ask Diana whether she would be willing to come by our apartment, if her schedule permitted. I explained Jim's condition. Without hesitation, she said, “Do you want me to spend the day? I can be there at 6:30 am.” I was dumbfounded. We picked a date. At first, when I told Carrie that Diana was coming over, she didn't seem eager to have her, but that reaction changed. Diana came over again and again, and she was welcomed.

But the first time she saw the bed, she ordered me to get boosts for the legs – that night! When Diana said, “Do something,” I did, so I raced to a bedding store and bought them. At 9:45 pm, Rick and Diana arrived. Jim was asleep. While Rick lifted the head of the king-sized bed, Diana crawled under it and extended the legs under the head of the bed by adding the boosts. Jim awoke in the middle of the activity and grinned from ear to ear as the bed swayed like a ship in heavy seas. When they finished, Diana said, “Now! Jim will breathe better.” At 10:15, the Lone Ranger and Tonto left while I stood in disbelief.

Diana called, took our phone calls and came over. She showed us how to adjust pillows, to modify his food, to increase his fluid, to keep track of his calories, to change the information in the daily notes. The health advice she gave us was invaluable, but what she did for me was miraculous. She instantly grasped the ‘family dynamics,' and took the onus off me. With her help, I no longer felt like the interfering, inept, incompetent, pain of a family member. Diana was in charge. She said, “You folks got any problems. You write it in the log. This log is for me, and you tell them to me. Because this is about Jim's care!”

And later, when anyone complained, someone else would invariably write, “This is about Jim's care.”

One afternoon, Carrie looked at me and said, “Diana has come down from heaven. She IS an angel.” I never doubted it for a minute. Diana helped Jim and saved me.

If you live in the South long enough, sooner or later someone will say that someone has “been put in your path for a reason.” Diana made adjustments to improve the quality of Jim's life and mine. In time, whenever there was a problem, the aides would say, “Why don't we ask Diana?”

Diana promised to be there when Jim died, but her career took her to the west coast. It would have been better for me had she been there, but I also knew that she would be better able to serve the greater good by working in the ACU of a hospital in Sacramento.

Diana had shifted the angle of Jim's bed to improve his breathing, so, you are damned if you do, … He slid down. We needed to lift Jim's ankles, because his left foot tended to swell. Did I say, damned if …? We tried a piece of old egg crate, sheepskin or pillow under his feet.

When Jim developed red marks on his toes and ankles, I bought sheepskin ankle protectors. Because the Velcro closing on the protectors irritated his skin, I bought a sheepskin bunny boot. To keep the blanket from rubbing on his feet, I bought a blanket lifter.

We worried he might fall out of bed. After searching for available products, I balked at paying close to $1,000 for a bed rail. Rick and Diana invented one out of PVC pipe (I am embarrassed to say I didn't pay for that; they did).