The Shoulder Touch

As Linda because increasingly disabled, housework became too much of an extra burden. I got a flier in the mail from a local woman named Marcela, advertising a new house-cleaning service, so I called her and we made an appointment for a tour of the house and an estimate. She arrived, we looked at the upper level rooms, and then we went downstairs to look at the family room. There, out of Linda's hearing, I told her that my wife had Alzheimer's Disease and could not clean the house. Marcela made a small groaning sound that I had heard before, and she reached out and touched my shoulder. I had known this woman for ten minutes, and she offered spontaneous personal, physical sympathy with a single touch. At that moment, I knew that I would hire her.

Another time, I was at the hospital with Linda. I had called 911 to get help when she suddenly lost her ability to walk, and she was resting in her bed while I talked to the resident. This doctor was a young, pleasant lady named Dr. Slipka, and she had been telling me how they intended to take excellent care of Linda. We sat down by the computer while I told her Linda's history and she asked questions. As I talked, I began to cry, as often happens when I tell the story. She said that it must be very difficult, and she reached out and touched my shoulder. Again I felt that pure transfer of sympathy and love. It turned out that Linda had been suffering from a urinary tract infection, which can be devastating to an Alzheimer's patient and can cause many mysterious symptoms. Later, when Linda was discharged, Dr. Slipka said, "Thank your for the privilege of taking care of your wife." That was two years ago. I don't know how good Dr. Slipka was at diagnosing and prescribing, but I still think of her as a wonderful doctor.

When Linda was living in the dementia wing at Vintage Newport, I ate breakfast with her in the dining room there every day, and visited every evening. During these visits, I got to know the other residents very well. Some of them could communicate well and reacted to my greetings and conversation. Ramona, however, was one of the silent ones. She was usually seen wandering in silence wearing a look of sadness. I never heard her speak.

I don't think Linda realized that her fellow residents were demented. She greeted them all like friends, except the few that she didn't like, and when those approached, she gave me subtle clues, like rolling her eyes or making a little face. This morning, Ramona came across the dining room looking distant and sad as always. Linda turned, smiled, and said hello. As though she was waking from a trance, Ramona turned to Linda, looked in her eyes, and responded to the greeting. She said a few incomprehensible words. Linda responded in kind, and they carried on a little conversation -- I didn't understand a word of it, but they communicated directly. Then Ramona reached out, looked at Linda with great tenderness, and touched her shoulder. What was she trying to say?

The effect of touching the shoulder is electric: human warmth passing from one person to another. It's not sexual, it's not calculated, it just creates an immediate connection and delivers pure comfort. One compensation for our suffering is the deep connection that people are willing to offer, and the shoulder touch is a sign of this connection. Because people have shown me this kind of love, I pass it along to others whenever I feel the need to comfort or connect.

One night I was asleep in the assisted living. I lived upstairs, where the rooms are less expensive. I was awakened from a deep sleep by a loud screaming noise. It seemed like I lay there a long time, trying to figure out what the noise was. I finally decided it was a cat outside the window, and I went back to sleep. The noise kept up, however, and I woke again. This time, I felt like it was not a cat but a person, and I thought someone had to hear this and come to help. But the noise persisted, so I got up, pulled on my pants, and opened the door to the hallway. There, sitting on her walker and wedged into an alcove in the hallway, was Linda, a resident who had been sinking into dementia. She was still screaming and cursing. It was amazing to me that no one else was in the hall. How could the neighboring residents sleep through this? Where were the night-time caregivers? I went over to Linda and she looked at me in utter terror. She apparently believed that she had fallen and was lying on the floor. I approached her, said that everything was alright, and I put my hand on her shoulder. She immediately calmed down as though everything really was alright, and we began to try to figure out what to do. I went back to her room to look, and there was her emergency call button lying on the floor. Just as I was trying to decide on the next step, the stairway door opened, and Mary, the night-time caregiver, came into the hall. I never knew whether she heard the screaming at last and came to investigate, or was just on her regular rounds, but she took over and began to remind Linda about pushing that call button. The next week, Linda was moved to the dementia care wing where my own Linda was living. I will never forget the sound of her screaming or the instantaneous calming effect of my hand on her shoulder.

Nick

Nick is a tall man with thick glasses and squinting eyes. He travels in his wheelchair continuously, from one end of the unit to the other, into the dining room, around the corner, back to the end, up to the door, into the dining room, up to the other end, all day. Sometimes, Nick stops and says in a small calm voice, "Help. Help."

My friend Martha lost her husband last year, and at the end, she placed him for a while in a small home, with just a few residents. She complained that there was no social interaction, and the caregivers just placed the residents in front of the TV all day.

Activities are a tough concept for a dementia unit. The problem is that activities are exactly what many residents can't do any more. I volunteered one day with the exercise period. First, a caregiver tossed a ball to each resident in turn, and they caught it and tossed it back. That is, those who were able to do that did it, and the two-thirds who couldn't just watched. Linda was in the middle, she was able to bat at the ball, and she sometimes hit it. Either way, she had her usual great time. Then they switched to bowling. I set up the pins, and a few of the residents knocked them down. Noni was the best bowler, which was not surprising. Meanwhile, Nick roamed the halls, opening doors as he wandered. When activity time is over, the TV usually comes on. I know that people who run programs often downplay the television. "We almost never turn on the TV." "We keep the residents so busy that they don't need the TV." But it is very hard to keep a dementia patient busy all the time, and I doubt that the background noise and light of the TV makes much difference to them. It actually might be a comfort, since many of them probably had a TV on most of the time in their own houses. Most of us do! And if we didn't have TVs in the assisted living, what would we do with the old Lawrence Welk tapes?!