Dignifying Dementia (14 page)

As I said, when I told the agencies that Jim was suffering from Lewy Body Dementia, I assumed they were familiar with the disease and how to deal with it, even if I didn't. After some bitter experiences, I learned not to assume.

Therefore, I assumed that the aides – mostly women – who were sent to care for Jim were trained to deal with dementia, and I was entrusting them with the most precious man in my life – no different from any new mom leaving her child with her first babysitter. What a revelation!

Yes, as I saw it, they were trained – to complete timesheets, to get them signed and to turn them in on time at the agencies. Aides arrived late or left early to “drop off their time sheets.” The first aides who came to ‘help' did not know how to handle Jim, so I found myself morphed from the weary wife of a deranged man into a mother lion, bear or alligator protecting her helpless young from apathy and incompetence. These people were not the skilled ‘angels of mercy' I had imagined – far from it.

When an aide arrived, I introduced Jim, showed her around the apartment, pointed out what was in the refrigerator and what he liked to eat. I showed her his clothes and his closet, indicated where his supplies were, pointed out the bathrooms, gave her my cell phone number, explained his routines such as they were, described his personality, said he wore glasses, explained his love of books and music, that he used the word, “loo” for bathroom and “upstairs” for the bedroom. I also said, “If you speak slowly, he understands, if you wait for his response.”

After approximately 45 minutes, I would get out of the aide's way and go off to do whatever I had to do, secure in the assumption that he was safe and well cared for because he had help with him. If this was a first visit, I deliberately came back within an hour or two to make sure that all was well, with the intention of going back out, if I needed or wanted to leave.

But when I came back, it seemed that my explanations had meant nothing.

During the first few months of getting help, I was stunned by what I saw or was told when I returned. Aides told me: “It's Jim's fault he isn't wearing any underwear”; “It's his fault he was wearing only a shirt and urinating on the kitchen floor”; “It's his fault he isn't wearing his glasses”; and “I tied his shoelaces together because he was playing with them.” Another never smiled. Another said, “It's his fault he has no clothes on at all because he refused to put them on.”

Was Jim on the computer in the front room surfing rappers' websites? Did he turn on soap operas? What had he been doing when an aide was asleep under a blanket on the sofa?

The aides were invariably on their cell phones, awaiting other assignments or dealing with personal problems. Jim was not the priority. And this was the ‘help' I so badly needed?

Apparently the aides didn't have the skills to put his glasses on him or dress him or pay attention to him, and Jim seemed even more miserable and more paranoid.

The list went on. One aide talked to me and ignored Jim. I took her aside and repeated that he was slow in responding, but he understood what she was saying. She continued talking to me, not to him. At the lunch table she told a story of a drowning. I turned to Jim and asked if he had heard her story; he said, “Yes, it's tragic.” She looked startled, so I took her aside again and pleaded with her to talk to him, not to me. She said, “Oh! You want me to treat him like a REAL person.”

When I called the agencies to tell them what had happened or to explain that a personality wasn't a good fit, the scheduler let me know “I was being difficult.” Once again, I was making assumptions. I believed we had choices. However, if I called to say that someone was working out well, “Oh, sorry, she isn't available. She's on another case” or “She is just available this week.” I had become so distrusting, I was no longer sure that what they were telling me was true. I couldn't bear to leave him like this, so I stayed home or went out briefly and returned. How could I leave him? What was the point of getting help?

One woman at an agency said, “Jim clearly needs to be in a nursing home because we can't find the right help.” I refused to give up. I kept trying; some aides lasted a day, others for up to two weeks.

I encouraged the aides to take Jim out for a drive or for a walk; they did, but, in one instance, I learned from the manager of the grocery store that Jim had walked up and down the aisles yelling for the police.

So, the three of us went out together; at least I could accomplish what I needed to do, and Jim could stay in the car with someone to watch him, or they could take a walk. At times, we all went to lunch together or for a drive.

One young woman drove with us to Charleston when we went to see Jim's neurologist. Because her allergies were bothering her, she took an antihistamine and curled up on the back seat and slept. On the way back, when we stopped to buy bread, I took Jim inside the store and worried about leaving her in the car alone dead to the world.

On another trip a different aide came to Charleston. This time when we stopped for smoothies, I placed the order at the counter, paid the cashier, held Jim's hand, tried to carry the three large smoothies and find an empty table, while she went to the rear of the restaurant and read magazines. While I kept an eye on Jim and walked over to her to hand her a drink, I asked why she was sitting in the back. She said, “I wanted to give you space.” Thank you. What we needed was a hand.

I felt optimistic when I was told about a young woman, who was “great,” and she could live in, if I wanted her to. But I lost confidence, however, when she telephoned, yelling into her cell phone to get directions to our apartment – approximately 1,000 feet away from where she was calling. I concluded that it wasn't an ideal match, when she arrived at the door, strode into the apartment, did not ask to meet her patient, Jim, and said, “I ain't had my brefus yet. You got any pancake mix?”

Bewildered and frustrated, I called the representative of the insurance company and told her of our experiences. She asked me to write her a letter explaining the nature of the help we had been receiving, so I sent her a list of thumbnail sketches. As a consequence, they responded by giving me greater latitude in hiring; I was allowed to employ people privately rather than through agencies, and, if there were issues around certification, I could run the candidates' qualifications by the insurance company. For example, they permitted me to hire someone whose license had expired and someone else who was certified in a different state. By now I had learned that some agencies had ‘umbrella' licenses, which meant that the agency, not the aides, had the licenses. I could not and would not give up hope of finding better trained, more empathetic people – and there was an upside. By eliminating the agencies and their fees, the insurance money might last a tad longer.

To find help on my own, I asked at the pharmacy. I called the hospital, doctors' offices and even asked at the bank. I asked a friend. Who do you know? Who do you trust? I discovered a network of caregivers. Once again, I was hopeful. But looking for people on my own had its drawbacks, too. I met a delightful aide who had written a Gullah cookbook, but she was rarely available because she was on the road promoting her book and almost immediately hurt her back in a car accident. I learned of another aide, but she was on another case. I met a woman whose current client was relocating; she was set to start, but she suddenly left town to drive to Texas to be with her daughter.

There were eight million stories and an equal number of problems.

I asked someone if she could come at 7:00. She arrived at 8:00. “I can do the first Sunday, not the third.” “I can do the second, not the first.” “I can only do afternoons.” “I can only do mornings.” “I am going away until …” “No, that number has been changed.” “I can't do that Friday; I can do this Friday.” “Sure I can work until seven.” “No, I can only work until 6:00.” “No Tuesdays.” “I only do 12-hour shifts.” “No, I won't work with you, if THAT person works with you.” “I only work 8:00 to 2:00.”

Then I met someone who considered sitting with Jim, but that didn't work when she said, “I don't deal with incontinence.” I tried a retired nurse who “ordered” Jim around. Her approach was so authoritarian that he became agitated. I suggested she keep an eye on him from the porch.

I was introduced to two sisters who worked together and could cover for each other, but at the lunch table, when one asked Jim to say
Grace
, he muttered something, got up from the table and then whispered to me, “THEY are taking over.”

It seemed to me that most caregivers had little or no interest in Jim and his likes and dislikes. While they would give him the food I left for him in the refrigerator, giving him his newspaper, engaging him in ‘conversation,' or playing CDs of Mozart, Brubeck, Boyce, and Jarrett, which I left by his radio, was another matter – and forget National Public Radio's
Performance Today
.

I suspected that the programs that were on the TV when I came back wouldn't have been Jim's first viewing choice. That he was Irish, well-traveled and politically-aware seemed irrelevant, that he had a huge vocabulary and used periodic sentence structure that faded off into no object or subject seemed to be of no consequence or of any interest. True, someone was watching him and could phone me, but that wasn't the help I hoped for. No one seemed to try to communicate with him.

Eventually, eventually, umpteen people later, when my hope was fading of ever finding anyone who genuinely cared about the man and understood his disease, Carrie came into our lives. She was patient. She listened and laughed with Jim. She was physically and emotionally strong and understood the illness. She had worked in a dementia unit. She taught me.

Carrie would open the front door to let Jim's hallucinations out, saying, “I asked the person who was in the chair to please leave because he or she is no longer welcome here. They are gone now.” It was Carrie who told me when Jim ‘shushed' me that he had “been whispering all day.” It was Carrie who was invited to take a shower with Jim, who laughed when he began to wash her hair as she bathed him. It was Carrie who was invited to use the toilet next to him when he sat on the portable commode. It was Carrie who brought him oatmeal cookies, who said he was on his ‘ignore' button, who took him for walks, for ice cream, for drives to the beach. It was Carrie who paid attention to him, who gave him his books, who sat next to his chair, who talked with him, who listened to him, who played his music, who fed him, shaved him, dressed him, put on his glasses, his hat and found his wallet. It was Carrie who cooked what he liked when he wanted it. It was Carrie who suggested different clothing or different foods, who noticed a change in his condition. It was Carrie who called me when there was a problem or explained to him when someone was coming over to visit or make a repair.

And it was Carrie who became outraged and said, “Where is YOUR mother?” to a man at a restaurant, when he told her to “Get that crazy man out of here!”

Carrie sat with Jim showing him the pictures of our new car so that he would be ready for the change. I had been concerned that a new car might bewilder him. We all drove to the dealership, and Jim said, “This is where I get my cars.” And he beamed when the salespeople greeted him with “Hello, Mr. Tierney.” We got in the new car without a hitch.

We finally had ‘help.' She cared for Jim and taught me. At first, she was only available a few days a week, but that was a start. It was possible. She was a godsend. Later, she became available Monday through Friday.

But even with the best of help, there were challenges. And Carrie couldn't be there 24/7.

One of our interesting struggles was getting Jim a haircut. We continued going to our salon as long as we could. It was an outing. Jim would walk into the shop that we had been going to for years, look at Diane or at David, our stylists, and his face would brighten. He would grin and say, “Hi.” After his haircut, after Carrie and I helped him out of his chair, gave him back his hat and glasses, he would reach into a non-existent pocket in search of his wallet; then we would walk to the car. Once outside, he would look at me as if I were a stranger and be unwilling to climb back into the car.

On other visits when we drove to the salon and he refused to get out of the car, Diane would come out to see whether he recognized her. Sometimes it worked; sometimes it didn't. Increasingly he balked, so she offered to come to the house to give him a haircut. The first few visits were fine, but then he shoved her. Diane bought us a pair of clippers for Carrie to cut his hair. Carrie also clipped his nails and continued giving him his one, two or three showers a day.