Ten days ago, I knowingly walked mom out of the only life she knew into the only life she knew she never wanted. I understood how much her home meant to her. I was told time and time again that she wanted to die safe within its familiar walls, decorated with the smiling faces of happier times spent with my sister, brother, and me. Times spent with our spouses, mom’s grandchildren and great-grandchildren, her extended family, and her friends.
Mom lived solo for years and loneliness visited daily. Her neighbors no longer knew her. They didn’t have the patience to get to know the woman dressed in dementia. It was easier to nickname her the “crazy lady on the corner.” It was easier to laugh at her, or feel sorry for her, or be angry with her when she’d dare try to visit with them despite her broken mind. The same could be said about her friends. Most of the time, mom’s calls to them went unanswered. Even when they did answer her call, mom didn’t remember they spoke, so she’d call backwith the same questions and comments. Mom’s extended family had their deep-seated reasons not to call or visit as often as they used to. Mom may not have understood why the absence of family and friends from her life, but I did. I admit, many times I let the phone go to voicemail. I just couldn’t bear the thought of the redundant conversation waiting for me at the other end of the line.
Mom’s home was her only friend. It was the one thing she remembered without pause. She knew it was hers; it was paid for, and it was beautiful. No matter how run down it became over the years, she accepted it as perfect just the way it was because it was familiar; it was her joy; it was her purpose; it was the only thing that needed her as much as she needed it.
Mom spent much of her time at home reading and then re-writing the information in her address book onto little scraps of paper. When I’d call or come over for a visit and ask what she’d been up to, she’d say she was busy doing book work. She’d stand at the counter in the kitchen for hours. So many hours, in fact, that her bones grew crooked and her ankles and feet swelled. She’d call me constantly questioning me about my family’s birthdays, anniversaries, and special occasions that she didn’t want to forget. This was the only way she knew to stay connected.
Mom would repeat the names of her 16 siblings, making sure to mention with reverence the brothers and sisters who have died and she was ever-grateful to God for those who remain: “Thank you, dear God, for my brothers and sisters who are still alive!” she wrote.
I used to pay someone to come over to mom’s house for a couple of hours every other day to be her friend. Mom’s friend-for-hire would play cards with her, sing with her, dance with her, or do whatever mom wanted to do. This wasn’t enough to quench mom’s thirst for attention. As soon as playtime was over, she would call to remind me: “I hate being alone.” Mom insisted nobody loved her and nobody cared. “I’m gladI have this big house to keep me busy or I don’t know what I would do.” she’d say.
Five weeks ago, mom unknowingly wandered away from of the home she loved. A passerby recognized mom’s confused body language and stopped to ask if she needed help. She said she did.
“She has a dinosaur key chain with two keys on it, neither open the doors to her home.”
“I’ll be right over,” I said.
When I walked into the neighbor’s house, I was met by the daughter of the elderly couple who lived there. With a stern look on her face she said, “I think it’s time, if you know what I mean.” I apologized and assured her I knew what time it was.
Today, mom lives in a one-bedroom apartment in an assisted living home for seniors. It’s new, and clean, and organized. Everything mom does is scheduled, monitored, and analyzed. Instead of taking vitamins, like she did for most of her life, mom takes pharmaceutical drugs. One pill to help stabilize her dementia, another to reduce swelling in her legs, and yet another to calm her nerves and minimize the incessant talking and questioning about where she is, why she’s there, and when she can go home. The drugs make her tired, she walks like she’s had a few too many Manhattans, and her vision is so blurred that even her favorite shows, Wheel of Fortune and Jeopardy, that used to make her smile, serve only to frustrate her.
In my naïvety, I thought life would be better for mom and for me with her tucked safe away from the real world. I figured with meals at-the-ready and strings attached to every wall in every room for her to pull in an emergency all should be right with the world.
Unfortunately, I failed to check the boxes and bags that I hauled over to mom’s new home for stowaways. Without my consent, dementia and loneliness moved into mom’s new place, too. Only this time, there’s no big house to keep her mind occupied, off the feelings of loss she experiences so often.
If I could, I’d tent the whole building where mom lives and exterminate dementia and loneliness like the cockroaches they are, but I know they will only adapt and survive despite my efforts.
When the activities are over, the meals are eaten, the singing stops, and the last card is played for the day, even though mom has a new, clean, cute little apartment to retreat to that resembles what she once knew, she still goes back to the empty space in her mind, a space she doesn’t recognize, a space far, far from home.
I continue to make frequent trips over to the home mom once called home to sort through all the stuff left behind, the stuff of a lifetime. It’s sad for me to face the truth, but mom’s home is no longer needed, no longer wanted, no longer loved like it once was. The joy it used to bring withered and died along with the memory of mom who used to live and love within its walls.
I’ll list my mom’s home for sale in the near future, but before I can do what needs to be done, I need to answer the phone that continuously rings for my attention.
“Sandy, where am I?”
“Is it daytime or nighttime?”
“How far are you from me?”
“Can you come over now?”
“Please come over.”
I may be naïve, but my hope is that mom will stabilize soon and she will be able to stay in the cute, little one-bedroom apartment I picked out for her, the apartment she accepts the best way she knows how one minute and rejects the next.
What’s the alternative?
Mom will be moved into a small room in the advanced Alzheimer’s unit where every day is the same…everyone is tired, their vision blurred, and nobody knows if it’s day or night.
I know I need to forgive myself for not giving enough, not doing enough, not being enough to keep the plight of dementia from moving into mom’s life and mine.
Although I wonder about tomorrow, I’m grateful for today. I’m hopeful. I believe hope is never lost, only my commitment to hope is lost, and that’s only if I allow it.
My plan for the future?
I’m going to “let go and let God.”