I got back last Tuesday from Ohio where I visited my dad and my mom. I now list them separately, in a sad way. My dad and I visited my mom in her new home in the Memory Care Unit, which is a nursing home for people with dementia. The staff there are very nice, and seem genuinely concerned about taking care of these people who are struggling. They are also trained to support people with dementia.
I last saw my mom a year and a half ago. At our first visit this time, her verbal exchanges were limited to
- 25% introductory clauses (e.g., "You know what I think...")
- 25% Blah Blah Blah. Literally. "You know what I think, blah blah blah." There is a little singsongy cadence to this.
- 25% Raspberry noises. I am assuming this means she is lost or doesn't know what to say.
- 25% Singing the Mexican Hat Dance. I am assuming this means she is happy. My dad asked if I could teach her another tune.
My mother seemed to be in a reasonably good mood on the first visit--not so much on the second and third. Belligerent is the best word I can describe use to describe her mood on the second and third days. She wasn't belligerent the whole time, but enough that I was walking on eggshells, worried that I would set her off. On the first visit, my dad brought a photo album with my kids. She enjoyed looking at that, and would carry the book around. When I picked it up to return it to her room, she stared at me and said, "That's my book," as if I were taking it away from her.
The next day, my dad brought a photo album I had assembled for her years ago of Michael's and my childhood birthday parties. I showed her pictures of my brother and I as babies, along with many of our relatives when they were young. She started to cry, so I turned the page. She continued to cry, so I put the book aside. The television was on in the background. A commercial for the ASPCA came on with the most forlorn looking animals ever assembled, all of them in wire cages. This did not help her crying. This commercial was followed by a commercial for St. Jude's Children's Hospital. Even with her memory loss, my mother understood that children without hair have cancer. She was now in a mode of unstoppable sadness.
I decided to see if I could further distract her. My father bought a coloring book of Christmas drawings, and I brought it along. I got out the colored pencils she had bought a few months ago, and started to draw. I asked her if she wanted to draw, too, and this filled her with anger.
"What are we doing here? What are we doing?" I put the coloring book away, and went and sat beside her.
"This is bullshit. This is bullshit," she said, her belligerence building. "What are we doing? Why am I here? Bullshit."
"Laurie thought you might want to color," my dad said.
"Bullshit," she said, glaring at me.
"She loves you," he said.
"Bullshit," she said. I had no idea what to do. I was afraid to say anything for fear for further making her angry. At the same time, it is really hard to love someone when they are screaming "Bullshit" in your face.
I like to
swear, but I avoid swearing at people. My son likes to swear, and we've had conversations about the appropriate audiences for swearing. Having my mother swear at me was highly unsettling, and there was little we could do to reason with her. Ester on the other side of the room looked over to me and made a patting motion with her hand. I reached out and patted my mom on the arm. Ester nodded.
"Give her a kiss," Ester said looking at my father. My dad leaned over and kissed my mom. The swearing stopped. Ester seemed to know how to cope with my mother better than my father and I.
The next day was rough, too. My father and I walked in and the group was in the middle of an activity. It was the Martine Luther King, Jr. Day of Service, and five college were students hanging out with the group. We apparently interrupted my mother, because before we even made it down the hall she started yelling at my father and I. She interrupted the circle with numerous "Bullshits."
The students kept the residents busy, so I didn't get a chance to talk to my mom. When it was time for lunch, I walked her down the hall, holding her and singing the Mexican Hat Dance. I was wearing my leg brace and left my crutches in the closet outside of the Memory Care Unit. I was leaving at noon to join my friend Beth from high school for lunch. I figured if I walked off with my crutches, she would see I was leaving and that would upset her. The staff says a stealthy departure is best, because the person with dementia will forget three minutes later that you were even there.
As we got in the dining area, my mother stumbled. I realized that me and my weak leg were not the best person to support her as she ambled down the hall. I feared I would have dropped her and landed on the floor myself. I was lucky my brace held both of us up.
I left Columbus on Tuesday. I said goodbye to my dad at the baggage check-in. I remembered my carpenter Carl said he had his best airport experience when he was in a leg brace and in a wheelchair. I would say that was true for my time at Seatac. I got a wheelchair and the Delta guide wheeled me to security. I told the TSA staff I was wearing a leg brace. I forgot to tell the TSA folks in Seattle, and they were surprised when I set off the metal detector. The woman in Seattle was kind when she saw I was wearing a leg brace. I went through the body scanner and had a pat down.
"Can you take the brace off?" asked one of the TSA guys in the Port Columbus Airport.
"I can, but it takes ten minutes to readjust," I said.
"Okay, we'll send you through the body scanner and then you'll get a pat down," he said.
"That's fine with me," I said, trying to be agreeable. I went through the body scanner and they did a pat down. The woman who did the pat down wanted to look at my brace. Fine again. I complied.
"I need someone to scan this brace," she said. In the meantime, another woman starts yelling at me about sending my laptop through without putting it in a separate box.
"Is this your laptop? You are supposed to pull it out..." she said.
I know, I thought.
I am in a wheelchair, and my helper put my bag through security. I didn't have to do this is Seattle.
The woman with the metal detector wand scanned my leg while the laptop lady continued to yell at me. The metal detector lady said, "You need to take the brace off."
What? I thought,
This is absurd. I didn't argue. I took off the brace. I know the job of TSA is to make sure we are safe, but what about showing kindness to the people they are supposed to protect? Like an obedient child doing something against their own will, I hiked my yoga pant leg cuff up to my thigh, and removed the brace. I asked my helper for my crutches. I was so frustrated. In Seattle, I had worn corduroy pants and the only way to take off the brace would have been to pull my pants down. What I had just had surgery and couldn't take my brace off for six weeks but needed to travel? Seriously. What if I were permanently disabled, and not temporarily? How are we supposed to manage? Have these people ever spent time on crutches or in a wheelchair? Is there empathy training for these folks?
By time I got my brace back on and wheeled to the gate, I was in tears. I wanted to scream "This is bullshit!" I wanted to be like my mother and not have a filter and express whatever emotion came to the surface. Logic, patience and rationality be damned!
The women at the gate were lovely and nice, but empathy after the fact doesn't negate an awful experience. One of the women had a knee replacement, and was regularly harassed by TSA, even though she has a card from her doctor. Not everyone travels for happy reasons, either. Not everyone is going to Disneyland. Some of us are traveling not because we want to, but because we have to visit our ill or dying or dead relatives.
When I got home, I told my daughter I wished she were there to videotape this event with her phone and we could post it online. She smiled with glee at the thought of her video going viral of me being abused by TSA agents. I was right there with her, even if it meant me standing in the middle of airport security in my underpants.
Like my mother who would rather have her memory back, who would rather be busy and be able to participate in regular life, I'd rather not be in this spot, needing extra support. But here we both are, needing help because of loss of independence.
