real lj idol | week 32 | 2000 words
They say that when you go into emotionally difficult situations, it's best not to have too many expectations. But it turns out that no matter how hard you try, you'll still have a few you're not even aware of.
This is the story of my visit to my sister in Idaho.
I wrote about her a few weeks ago, about how Huntington's disease has slowly stolen her away from us, and is taking her abilities and independence from her as well. I'd thought many times about going to see her, but always got caught up in the physical and emotional logistics of the situation. Not only is it tough to get from Sacramento to the nursing home in Idaho where she now lives, there's the social discomfort of making conversation with someone you really don't know anymore. I'd seen her just twice in the last six or seven years, after she finally got over the delusions that had caused her to "disown" me eighteen or more years ago.
After writing that story, I looked at travel options yet again, and this time I found something I thought would work. I emailed my brother-in-law to see when his next planned weekend visit to Idaho would be. We agreed to meet up then. I would fly into Boise on Friday afternoon, and then drive two hours to the town near where she was staying. He and I would catch up over dinner on Friday night, see my sister on Saturday, and then on Sunday morning I'd drive back to Boise and fly home. (Direct flights between Sacramento and Boise are so limited that travel decisions are dictated by airline schedules).
Everything seemed promising until my brother-in-law called me on Thursday night. He had pneumonia and was too sick to make the trip. He'd been sick for several days, but seeing the doctor that day had stripped away any remaining shreds of denial about just how sick. So he couldn't travel, and my arrangements were nonrefundable. That was exactly what we'd both hoped to avoid.
He briefed me on activities I could do with my sister, and what her current limitations are. She can still get around with her walker, but only over short distances. The nursing home makes her picnic lunches to take on outings now (foods she can reliably manage), and she tends to get tired after about three hours. She remembers the distant past better than more recent years, and she gets stuck on ideas and tends to repeat herself. But she's in a happy state of mind, and mostly remembers the good things. After learning more about Huntington's and why it causes dementia, none of those guidelines surprised me.
My Dad's birthday was on Friday, so I called my parents from the hotel. My mother told me repeatedly that my sister has gotten worse, and that her movements are much larger and uncontrolled and now also affect her speech. Maybe my mother was trying to prepare me—I don't know. But my sister is her oldest stepchild (yes, she makes that distinction), and being who I am, I heard it instead as a blame-ridden litany of how my sister would be difficult and disappoint me.
"This trip is more for her than it is for me," I said.
It was true. Huntington's caused the delusions that made my sister mad at me so long ago. Now that it has erased them, along with her memories of that estrangement, I'm part of her family again—a family she loves and misses. Like anyone confined to a nursing home, visitors are a real treat for her. Even though she was disappointed that her husband wasn't coming, he told me she was very much looking forward to my being there. We knew things would be a little more difficult without him, but that wasn't what mattered. She was excited about my visit, and she'd been talking about it all week.
Looking back, what he'd said about her mental state should have reminded me of another, more familiar condition, but I'd overlooked it. So had everyone else.
When I got to the nursing home on Saturday morning, my sister was dressed and ready to go. She's a very early riser, so she'd been out to the front a few times to look for me. The staff sent me around the corner, and there she was, making her way toward me. But when I got closer, she announced that her sister Karen was coming to see her, and started to continue past me.
"That's me," I said. "I'm Karen." I thought that would clear things up, but it didn't. Not at all. Over the next few minutes, I realized that the one, small expectation I'd had was still one too many.
My sister doesn't recognize me anymore.
I'd hoped to take her out for a drive, and maybe stop at the waterfalls nearby. But whatever mental image she has of her sister, I don't match it. I'm a stranger now. Going for a car ride with a stranger isn't fun, it's just scary.
My plans evaporated to simply staying at the nursing home and picnicking under a shady tree.
The nurses helped her out to the glider rocker in front of the building, and got her set up. She told me later that they'd cleaned her walker up for company, and from the pictures in her room I could see that she was wearing her favorite clothes. It hurt to know how much they and she had prepared for this, only to have me be a disappointment to her.
We chased memories around, including the horses she'd loved to ride and the farm we'd lived on until I was six. She remembered being a counselor in Eugene while getting her Masters' degree in Psychology, and that she used to sing and play the guitar very well. She didn't talk about me or my younger sister at all, but she mentioned the names of our two other siblings. The three oldest kids are from my father's first marriage, and all lived together until my sister was fourteen. My father remarried then, and she chose to stay with him and my mother. I was born fifteen months later, and four years after that she went to college. The biggest block of time I had with her was in those first four years. Now I wonder if the toddler 'me' is the only one she remembers, or if I'm simply more of an idea than a reality.
Of the few things she remembers, there is one I wish she didn't: she was raped by a group of boys in her late teens, and became pregnant. Her mother wanted to keep the baby but her own Huntington's was too advanced for that, and they had to give the baby up for adoption. My sister never had any other children.
I so wish that had been one of the things she'd forgotten. How unfair to have those memories remain intact when so many good ones were lost. I hope they're limited to being just "headlines" in her history, but even knowing that they happened is more sadness than she needs.
She told me many times how nice it was to be outside, and thanked me for bringing her out into that beautiful day. She has always loved being outdoors, whether she was riding horses or hiking or just sitting by a river. It must be hard to need supervision now for something as simple as sitting outside.
She also told me how much she loved her husband, and that was so nice to hear. For many years, the Huntington's made her impatient with him and eventually angry, and he is such a wonderful man and has loved her so strongly and solidly through years of aggravation. Even if she doesn't remember everything about their past and the experiences they shared, she remembers those qualities in him that first made her fall in love. Those seem to surround her now, helping to comfort her even when he isn't there.
She started getting sleepy after just about three hours, and I knew it was time for me to leave. The nurses helped her with her walker, and we all went inside. She perked up enough to get there on her own, but soon realized she needed a nap. Her bed, though, was unacceptable to her, and it took me a few tries to understand exactly why.
I'd barely left the room to see about getting a more colorful blanket for her, when one of the aides asked if I needed something. She not only knew what my sister meant about wanting a different blanket, she knew which one it was. She couldn't find the blanket with the nature portrait of horses, but she found a similar one with black bears that apparently was good enough.
Just in the time I was there, I could see why my brother-in-law had chosen that small facility in that tiny Idaho town. The staff is patient, and they are kind. They keep the patients comfortable and as entertained indoors and outdoors as possible. There are regular bus trips out to eat or do other activities, which gives the residents back some sense of the independence their bodies deny them. The assistants take patients to a windowed waiting area and sit and chat with them. One aide sat in the cafeteria with an elderly woman, talking to her and cradling the woman's bandaged feet on her lap.
Those people who love their patients and truly care for them with kind words and soothing touch are such a blessing. My sister's mother was known for her occasional jailbreaks out of her nursing home, but my sister has never tried to do that. She may lack the energy or spark, but I hope the real reason is that she simply doesn't feel the need to escape.
I took the blanket back to my sister's room, and made her bed with it in place of the dull white one she hated so much. Then we quietly traded our goodbyes. I don't know how she usually is when visitors leave, but she didn't seem upset. I wonder if that might have been because she still wasn't convinced I was anyone she even knew.
I drove back to the hotel feeling emptied out and sad. I decided to write this all down because it's easier than saying it out loud, easier than admitting all the reasons this whole thing hurts. I'm afraid to go too far into all the pain below the surface, because if I got there, really got all the way there, I know how hard it would be to climb back out. God help me if my parents ask how things went because I don't want to talk about it, and they'd want to know why I don't want to talk about it. I don't have the energy to defend that choice. Sometimes, belaboring the painful things you can't change doesn't actually make anything better.
Most of all, I can't shake the feeling that I completely failed at doing the one special thing for my sister that was the point of the whole trip.
My husband offered a perspective that I'm trying to hang onto. It might seem like a long and expensive journey just to wind up sitting with someone under a tree for a few hours, but even if my sister thought I was a pleasant stranger, we were still outside enjoying the beautiful weather. For her, it was a really nice day.
I can believe that intellectually, and maybe in time it will start to feel true. But my fear is that it doesn't complete the story for her. I know she enjoyed herself, but what if her lasting impression is that she waited and waited all weekend for Karen to visit her, and in the end Karen never showed up?
Thanks, everyone, for your support. You can vote for this and other fine stories here.