June is Alzheimer’s and Brain Awareness Month
"I use these for notes." She explained. I was at home in England, and my mother was carefully cutting the white borders from magazine photos and then placing them in an envelope. She explained the whole process to me, why she needed these tiny pieces of paper, and why it was necessary. I listened carefully, and for a while, I agreed with her thinking. It seemed like a good idea. Using these small strips to write little reminders on was not bad. Then I stopped. It was nuts. If you need to make a note, find a notepad. My mother was in her 70s, retired, being looked after by my father, so I am not sure what notes she needed to make. And so many notes. There must have been hundreds of strips of paper in the envelope. In her bag were other envelopes also full of note-taking aides. What had happened?
She had a stroke, that was what had happened. It happened when she was in her 50's after visiting me in Japan, possibly brought on by the long flight. She had recovered her speech, her ability to walk, and for many years, she seemed to be functioning fine. She had a job, volunteered, and she and my father had friends over for dinner frequently. Then it all changed.
She became angry with my dad. Swearing at him when he misunderstood her, which grew more and more often. She often forgot words – "You know the…" She misused words, like "the counter – that you use for the television." "The remote control?" "Yes, I said that." Or sometimes she used the generic word for specific ideas, like "the thing – that you use in the bath."
One time, I was at home, she went upstairs, put make-up on, a long frock, and jewelry, ready for a formal dinner. She looked the part, but when people spoke to her, she could do a couple of rounds of conversation:
"How are you?"
"Not too bad."
"Isn't this nice?"
"How's your husband?"
"It's lovely. Very nice."
It got worse. My mother developed new hobbies. Going off into town and not remembering how to get back home. Buying and hoarding purses and brooches and cocktail dresses from thrift stores. Shoplifting. She stole knick-knacks from gift stores, scissors and prescription pads from the doctors, and kneelers from the church (not our Methodist church, she did have some standards, but from the medieval parish church).
It all came to a head when my father, who had Parkinson's, fell in the hallway and could not get up. My mother saved the day by climbing over him and going out shopping for a couple of hours. She was in another world.
At the time, it seemed the only option for her safety (and my father's sanity) was a nursing home. I was the one who took her to her new home. It was an excellent facility – an early Victorian-era home looking over the sea, with a fresh smell of flowers instead of the usual scents of hospitals, bright and comfortable lounges, and a room with some of her furniture, ornaments, and pictures. But it was still a facility.
She had not known what was going on at home, continually repeating herself, asking questions, and not being clear on who I was, my sister, or my father. When I got her out of the car at the nursing home, she appeared healed. She suddenly knew everything, and she didn't like it. "Don't take me to the asylum," she begged.
My mother had taken her mother into a mental hospital about 20 years before. My grandmother, who had Alzheimer's, had a fit, got very angry and lashed out at my mom on the drive there. Karma was replaying the scene. I hope if my son ever puts me into a home, he is smart enough to get somebody else to take me!
That was when my mother died for me. The funny businesswoman, who was beautiful when she was young, watched 40's movies with me while my dad watched sports, and who loved adventure, whether it was experiences, travel, or food. That woman had gone. The woman who had caught, cooked, and eaten frogs from our back yard because French friends had told her and my dad that the croaking signified they were ready for the table. She had gone.
It was devastating. I often go back through what I remember of that day and think about how we could have done it differently—having live-in help, giving up my career, my adopted country to look after her. Putting her on a miracle cure diet of beets and Diet Pepsi and having Tibetan shamans pray over her? No, we did what we did.
She settled into her room, apart from trying to escape a few times. That adventurer climbed out of her first-floor room window and taking her walker with her, only to be spotted by staff, making her way back into town. She caused some commotion when she shouted out to passersby, 'I'm being kidnapped.' In a way, she was. In reality, dementia had kidnapped her from us. The second time she escaped, she watched the nurses operate the entry code, remembered the numbers, and used them to get out again. I sometimes joked with my friends that in another world, with her ability to escape, steal items undetected, and keep her identity secret, she could have been a spy on top-secret missions. (Joking is a way I avoid thinking about things that hurt.)
Like a child, she loved sweet things, fixating on a particular cookie brand, which she regularly ate, drawing, and coloring. As she lost her ability to speak towards the end, she made sounds instead. It's interesting that as people live with this disease, they revert more and more to a childlike state.
My dad couldn't visit her. It hurt too much. She didn't know him even though they had been together since their 20s. He celebrated their 50th Wedding Anniversary with his family but not with her. My sister and I supported him and spent time with him.
One of the last conversations I remembered with my mom before losing her ability to speak was this:
"Who are you?"
"I'm your son, David."
"That's nice. I have a daughter. She lives in Australia."
"No, mum, that's me."
"That's nice. And who did you say you were?"
She died about a year later of another stroke. At her memorial, many of the staff from her home were there. They were grieving alongside us, remembering, crying over the loss of the woman they had known. They were there for her, and they were there for the second stage of my mourning for the woman who didn't know me but seemed "happy" in her other world with her little strips of white paper.
The staff who looked after my mom were angels, and I'm forever grateful for the support they gave our family. Staff in dementia wards go underappreciated, often underpaid. Maybe that's why much of my work is about healing the healers, caring for the carers, helping those who look after others look after themselves. It's my little way of giving back to those who give us so much.
For more information and to donate, visit https://www.alz.org/abam/overview.asp.