Mom moved to an assisted living home three and a half years ago. She needed it, but she didn’t want it. (She wanted to be independent. We wanted her to be safe.) I had high hopes that this beautiful, well-appointed facility would provide her with a social life to replace the friendships she had left behind when she moved closer to my sister and me. For various reasons I’ll explain in another post, that didn’t happen, and she became dependent on family for social engagement.
She also became convinced that someone was breaking into her apartment and stealing her laundry. We watched to see if it was actually happening, but it wasn’t. Anything she couldn’t find, like her hearing aid or her glasses, had “gone out on a stolen basket of clothes.” There was no point in contradicting her; even if we found the missing object, she still believed in the mysterious clothing thief. Worse, she felt that the staff weren’t taking her seriously. “They tell me I’m lying!! They tell me I just don’t know where I put it!!” Irony: by trying to comfort her, the loving staff was making things worse.
I found that the best way to pull her out of this downward spiral was to leave the building. A change of scenery worked wonders. Thus, I became my mom’s social secretary. I have help: my sister and cousin are very involved, and my brother comes to town to provide us respite. But I have the most flexible schedule, so for the last three and half years, I have visited Mom or taken her on an outing five or six days a week.
A sample morning: I arrive at her little apartment. She’s on the sofa, looking dejected. She’s either playing solitaire or trying to work a Sudoku puzzle. Her eyes are red from crying; her hair is a mess, because she’s been pulling at it in frustration.
I say a cheerful hello and ask if she wants to go out with me. She says okay, but what’s the point, they’ll just steal things while she’s gone. I say I hope not. She stands up and says, “I don’t know what to do. I can’t stay here.”
Me: I’m sorry this is hard, Mom. (Hug her. Kiss her cheek. Look her straight in the eye.) What can I do for you?
Mom: Kill me.
Me: (Pause. Breathe.) Let’s go shopping first.
So we get her coat, and find whatever is lost (glasses, hearing aid, cane, key, it’s always something), and we head for the lobby. Sign out. Tell them we won’t be back for lunch. Climb in the car and drive to the thrift store, where she can buy whatever she wants without breaking the bank.
At the thrift store she miraculously cheers up. She is delighted to find four hardback books that look interesting. She turns to the clothing section and unearths two sweaters for me to try on. I find two pairs of slacks for her. We trundle off to the dressing room. (I have chosen this store specifically for its large dressing rooms, with benches where Mom can sit down.)
We decide to buy the sweaters but not the slacks. I know better than to argue with Mom when she wants to buy me something. We come out of the dressing room and discover a rack of used shoes. As I’m putting our purchases in the shopping cart, Mom takes off her tennis shoes and tries on a pair of brown leather flats that fit her perfectly. Hooray! One more goodie in the cart. She struggles to put her tennis shoes back on while standing (Red alert! Falling hazard!), and I suggest we sit down. There’s a bench across from the shoes.
Once seated, we’re safe; she can put on shoes without losing her balance. What she can’t do is stay focused with so many colorful things in front of her. So, instead of getting ready to leave the store, she’s trying on more and more shoes, sometimes the same pair over and over. I’m about to lose it when I spot . . . can it be? . . . high quality leather tap shoes in my size. And whoosh . . . I’m down the rabbit hole with my crazy mother, tumbling into Wonderland, trying on tap shoes and believing with all my heart that this time, surely, I will actually learn to tap. Is dementia contagious?!
We smile. We laugh. Somehow we manage to change back into our sensible shoes, pay for our treasures, and go to lunch. Which is delicious: old-fashioned Southern blue plate specials at the Our Way Cafe. We eat what we can and box up the rest for my husband, and I take her back to the assisted living.
On the way there, she slides back into paranoia: “I don’t know if I can stay here. I live in a den of thieves. I don’t feel safe.” Oh God, I’m thinking. All that fun, and I’m driving her back to hell.
I feel like Sisyphus, the ancient Greek ne’er-do-well who crossed the gods one too many times and was punished by an eternity of hard labor. He pushes a massive boulder to the top of a hill every day, grunting and sweating, only to have it roll to the ground again at night. Why am I pushing this emotional boulder? What have I done to deserve this? What has she done? Nothing, you say? Thanks, but that only makes it worse.
Yet I know I will push that rock up the hill again tomorrow. Why? My husband has watched me, and he says I do it for one simple reason. I like the view from the top.
He’s right. I like seeing my mom grin from ear to ear as she buys her baby girl a pair of tap shoes. I like bringing moments of joy to her life. But it can be exhausting, so I have to find ways to safeguard the rest of my life. To care for her, without making my life all about her.
And that, it turns out, is a very complicated dance.