Thursday, July 18, 2013

Lost in brain space

"If I could offer you only one tip for the future, sunscreen would be it."

I guess I knew it was bound to happen sometime. Or maybe not. Maybe my mom would slip away quietly, while still in her steady state, the one where she knows who I am, who my brother is, where she still has some memories of days gone by. Even if she can't remember her grandchildren, or the fact that she has a great grandson. Even if she can't remember what she had for lunch, or whether or not she had lunch.

As recently as two or three weeks ago, she shocked me on the telephone by asking, "how are things in Texas?"

It's as though something in her brain, some little light of memory and recognition flickered out between then and now.

We planned this weekend so that I'd have more time than usual with Mom. Thursday we flew into Orlando for a coin show and auction. Friday we drove to Cocoa Beach, so I could visit a glass vendor and handpick some glass. We spent the afternoon at the Kennedy Space Center. That was an impulse decision, and we were surprised to find out that it was more like an amusement park than a museum.

I have to admit, it was a thrill to see the space shuttle Atlantis. Especially the way it was presented. You go into a room and see a little movie and at the end the movie screen turns out to be a door that opens to the cavernous room where Atlantis hangs, suspended on cables, at an angle that let's you look into the open payload bay.

I live just outside Houston and I visited NASA exactly once, when the kids were small. But the Apollo moon missions are endlessly interesting to me. The first time I rented the movie Apollo 13, I watched it and the next night I watched it again.

And because I felt so cheerful, with 5 lbs. of bubble-wrapped glass in the car, and goosebumps from seeing the Atlantis, I agreed to go on the ride that simulates the shuttle launch experience. It was head-throbbingly intense but mercifully brief.

Afterwards we had a lovely seafood dinner overlooking the Atlantic Ocean. And Saturday morning I regretfully skipped the beach so we could get on the road to see my mom.

We drove some blinding rain and arrived about 1 pm, good timing I thought since mom finishes lunch about that time. I found her in her room, in her wheelchair. Her regular aide is away for a couple of weeks, but a friend of the aide is filling in, and she was there with Mom.

Mom didn't appear to know me, but the very first thing she said to me was, "I want to pass, can you help me." When my dad died at the end of 2010, my mom kept saying, like a broken record, "I just want to go to sleep and never wake up." I thought we were back to that. I was wrong.

It soon became apparent that my mom was playing a fantasy game of bridge.

It was time for the aide to leave, so she got mom in bed, with her feet propped up. Mom sleeps in a hospital bed provided by the hospice program, and it's pushed up against the double bed my brother and I bought for her, that she slept in for maybe a month, after transitioning from respite care to residence at Homewood, an assisted living facility.

I climbed up on the double bed so I could get closer to Mom and try to talk to her, try to find some evidence of recognition in her hazel eyes. Mom didn't know who I was, but she asked me several times, "what is the contract?" Periodically, she'd bid. "Two clubs."

Light bulb moment. She wasn't asking me to help her die, she was playing bridge. "Pass."

I wish I could say things improved from there. They did not. Mom dozed and we sat with her. Then we went to the Festival Mall for a while. I used to love to go there with both my parents. I couldn't help wondering if this was the last time I'd see it. Neil and I split a black-and-white cookie and had coffee. We went back to Mom, and she was sleeping. Someone had come in and put her in a nightgown while we were gone.

Dinner is at five and usually one of the Homewood aides comes and gets her up and ready. An aide did come in and saw that Mom was fast asleep and left. Mom's room is really dark on a rainy day, there is no overhead light at all, only one table lamp in the far corner. Five o'clock came and I said, lets wait 5 more minutes. At 5:07 I went to the dining room and asked if they were coming for Mom. One of the aides who has been there for a while said, I'll save her dinner for her.

So I went back to her room and as we were deciding to go to our hotel and check in, another aide came with a dinner tray. A grilled cheese sandwich, water, juice, pie. The aide woke mom and wrestled her into her wheelchair, although mom couldn't have been less interested. "Pass," she said, and "leave me alone." Neil and I were trapped and forced to watch in horror as mom was ordered to open her mouth and food was shoveled in, Mom fighting every bite. "Pass. Pass. Pass."

Finally it was over and mom was wrestled back into bed. I tried to make sure she was comfortable.

"Are you warm or cold?" I asked. "I'm not anything!" was the answer, delivered in a hostile tone.

OK then. "See you tomorrow, Mom, bye," and we were out of there.

Hoping that she was having a bad day, hoping that Sunday would be better.

Sunday was no better.

We arrived mid- morning and Mom was parked in the living room, in her wheelchair, having had breakfast and killing time until lunch with the other residents. She persisted in not knowing me. I showed her some pictures on my iPad and got a polite smile, without recognition or warmth. So I sat by her and talked with one of the other residents for a while. I'm not sure what's worse, losing your mind or keeping it and losing your body. This woman seemed sharp enough, but frail. And probably desperately lonely because she wanted to talk.

My mom mostly stared into space or into whatever space her thoughts go when she isn't sleeping. On Sunday it wasn't a happy space. She looked grim and blank. Eventually I rubbed her shoulder and told her I love her and she said, wait for it, "pass."

So we left and went to the beach.

Like goobers, we were wearing jeans and socks and shoes and didn't so much as have a towel. Luckily I go nowhere without sunblock. We took off our shoes and rolled up our jeans and took a walk along the water's edge. It was hot, the drop off was fairly steep so our jeans got wet. I was lugging a big heavy shoulder bag because I won't leave my iPad in a hot car. Neil insisted on carrying his shoes and socks, although I left mine in the sand by the lifeguard stand.

Along the beach were chaises and beach umbrellas, some occupied, some not. It took a while for us to figure out the system, which was basically a young man with a clipboard, an iPhone and a square-up device. I said to Neil, let's just plop down and I'm sure the system will be explained to us. Which it was, $11 for one hour, which I was happy to pay. That might have been the nicest hour of the trip, stretched out in the shade of the umbrella, listening to beach sounds, the taste of salt spray on my lips.

When our hour was up, Neil was ready to go, so we asked the GPS to find us a coffee shop. After a bit of wild goose chasing we found a sort of outdoor mall, lots of shops, not connected by a common space. We wound up at Panera where we split a sandwich and a muffin. After that it was time to head for the airport and go home.

I'm not sure when or whether I'm going back. I probably wouldn't go back if it didn't leave my brother bearing the entire burden of checking on Mom and making sure we are doing as much for her as we can.

Over the weekend I'd been texting my brother and talking to him on the phone. For some reason, I felt strangely validated when I got this email from him on Monday.
I spoke to mom today. It was not pleasant. She wouldn't say I love you and she said she did not have a nice visit with you and when I asked her if she'd like me to come over and visit she said no.

Maybe Mom will rally again. Maybe not. The day will come, if it hasn't already, when it's just not going to get any damn better. Unless she obligingly shuffles off this mortal coil before too much longer, there's every chance it will get worse. If anything is worse than not recognizing your own child.

Worse for me more than for her I suppose.

"Wear sunscreen.

If I could offer you only one tip for the future, sunscreen would be it.

Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 p.m. on some idle Tuesday.

Do one thing every day that scares you.

Don't be reckless with other people's hearts. Don't put up with people who are reckless with yours.


Get plenty of calcium. Be kind to your knees. You'll miss them when they're gone.

Whatever you do, don't congratulate yourself too much, or berate yourself either. Your choices are half chance. So are everybody else's.

Enjoy your body. Use it every way you can. Don't be afraid of it or of what other people think of it. It's the greatest instrument you'll ever own.

Dance, even if you have nowhere to do it but your living room.

Do not read beauty magazines. They will only make you feel ugly.

Get to know your parents. You never know when they'll be gone for good. Be nice to your siblings. They're your best link to your past and the people most likely to stick with you in the future.

Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.

Respect your elders.

Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.

But trust me on the sunscreen."

[Excerpt, Mary Schmich, Advice, like youth, probably just wasted on the young, Chicago Tribune, June 1, 1997
Covered by Baz Luhrmann, Everybody's Free (To Wear Sunscreen), 1999]

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