A is for Alzheimer's Happiness - by Nan Brooks

Just Cruising Along

 

            I could tell you the hard parts, the sad parts, the endlessly exhausting parts of dementia care. Never mind that. We need some good stuff these days. So, here goes.

               My mother was an unhappy and frightened women, by and large. Given her childhood, it’s no wonder. And dementia made it all worse. (I’m getting to the good part, I promise.)  After about ten years of dementia care, I was desperate yet again. I remembered a woman named Debra in a 12-Step meeting about 20 years earlier who, facing a tense and frightening situation, simply prayed for the grace to handle it well.  Pray for Grace – a good idea.  And my mother’s name was Grace, so there was that. As I fell asleep one night, I prayed again for the grace to handle the next day.

               The next morning I woke with absolute knowledge that my mother had never felt loved coming into this life and that my job was to do everything I could to help her feel loved as she left it. It was so obvious and I was fairly appalled that I hadn't realized it earlier. At least starting that day I would help her feel loved. It was that simple. And it turned out to be that easy, too.  Because within two weeks, her personality changed. We hear about how dementia causes personalities to change; how sweet and kind people become nasty and mean.  I’m here to say that the opposite happens, too.

               Until the day she died, everyone who helped care for her said, “She’s the sweetest lady. She appreciates everything we do and she thanks us all the time.” 

               And she was funny. One night we were all sitting in the parlor – which means everyone in the memory care unit was rounded up after dinner to watch television and get their bedtime meds. On this particular evening the television wasn’t working. The nurse was standing at her cart in the doorway, carefully counting pills into little cups and making sure the right person got the right meds. She was very focused. One of the cnas, (Certified Medical Assistants – the hardest working, lowest paid, and most valuable people in any such facility and women who kept me somewhat sane with their kindness and humor) were sitting beside residents, maybe turning pages in picture books or just holding someone’s hand. My mom was ensconced in her favorite recliner, Margarette, my wife, was sitting on one side of her, and I was on the other. Who knows what prompted her conversation, I might have been telling her that an old friend of mine had said to say hello.  My mom turned to Margarette and said, “You know, Nancy had a long line of women before you came along.”

               I gasped.  The nurse in the doorway tried to hide her laughter, but her heaving shoulders and pursed lips gave that away. The CNAs looked at each other, covered their mouths and turned away in hopes that I hadn’t noticed. Margarette laughed her great belly laugh and I figured that it was important for me to laugh too, just to give the staff permission. Besides, if I was still embarrassed in front of these women, what did that say about how much I cherished them?

               Margarette realized my mom had known exactly what she was doing – her eyes were twinkling in the way only those particular baby blues could twinkle.  Margarette said, “Well Grace, the line stops here.” 

                "Good," said my mother.

               I stumbled across this story in my journal the other day: One afternoon, I went to see my mom who was ensconced in that recliner. She didn’t seem to know me exactly, which startled me. She treated me as a friend, but didn’t call me by name and I thought, “Oh, this must be when she starts to forget who I am.”  The television was going – a cowboy movie maybe, but she didn’t care about that. She was watching the others in the room with great curiosity and looking out the window now and then.  She said, “When did you get on?”  Having learned not to correct her when she said something that didn’t make sense to me, I said. “Oh, not long ago.”  More silence.

               Then she said, “They could use your talent around here, that’s for sure. The entertainment's not all that great.”  She had been proud of my acting and my one-woman play about Eleanor Roosevelt, so I thought maybe she did know who I was. But it still didn’t make sense when she said, "The music is awful."

               “Everyone here is so interesting,” she said after a long silence. I said, “Yes, they are, aren’t they?” Still no idea what she was talking about.

               “We’ve had good weather, it’s nice and smooth.”

               And then I realized she was on a cruise! She had loved travel and learning about new places  and she loved taking off on cruises with my stepfather. There in the memory care unit, she was happily sitting on a cruise ship deck or in a lounge maybe, looking out at the sea and sometimes watching the other people on board. She may have thought I was her friend who played piano beautifully and loved show tunes. It didn’t matter. All that mattered was that she was content in her world of smooth seas, sun and wind, and good company.

               And it’s such a gift to me now, that moment. The hard stuff of dementia care slips away, sort of like the labor of childbirth. What remains is her joy.