Ariana is Still Growing
For a little background, you can start here: Three Reunions, Why I Had to Go
15 hours is a long time to spend driving, but I had a lot to think about on my trip from the southern Oregon Coast to the Los Angeles area. My older sister is mentally retarded and living in a nursing home. I hadn't seen Dori in somewhere between 12 and 15 years. I knew that she'd been confined to a bed for a long time, and I was apprehensive about what kind of shape she would be in. I feared walking into the nursing home and seeing bad conditions. I feared the guilt I would feel if I found her neglected in any way. I thought about the last time I'd seen her, and wondered if she still had the Nancy Drew book I gave her.
These thoughts, the sounds of radio stations coming in and out of reception, watching cars, cows, farms, and cities fly by all occupied my time from 7:45 am to 10:30 pm.
I stayed the night with an old friend from high school. Knowing she was a night owl I was able to phone her when I was about an hour out of my home town, and ask for a bed for the night, feeling fairly certain she would oblige. Getting back in my car the next day, I was still groggy, and somewhat apprehensive, but glad I had spent the night with a friend rather than in a hotel. I drove past the nursing home and to a Mexican restaurant. It was noon, I was hungry, and I wanted to make sure that I could speak with staff, and didn't want to get there while they were having lunch themselves. In a little community in the northern portion of Los Angeles county, I was pleasantly surprised by how quaint and pleasant the area was, and happy that it was right off the least congested freeway in all of LA. I felt comforted by this, and as I ate my late breakfast of huevos rancheros (for which I'd been seriously jonesing), I felt hopeful about the next step.
I walked into the nursing home, there was no bad smell. The building is old, and some serious refurbishing was going on. I found the front desk, signed in and received directions to Dori's room. I walked down the hall, around the corner, around another corner and to the end. I passed the dining room, therapy room, and nursing stations, and a handful of patients lingering about. I've been in my share of nursing homes in my life, and I'd certainly seen worse.
I entered her room, she had the middle of three beds, she was on her side, facing her television. I walked around and placed myself in her line of sight. She looked a little startled at first; remembering the nurse telling me how Dori had screamed when she first met her, I was a little nervous of her reaction.
"Hello Dori, its me, Ariana". She blinked a moment, then the recognition.
"My sister?, You're my sister? You're my sister! My sister is here!"
I felt my throat catch. I couldn't let myself be overcome, I focused. I needed to be happy.
"Yes Dori, I'm here, I've come to see you." I took her hand in mine, I squeezed her arm with my other hand. "I've come to see you, I'm here."
We talked for a while, I had to ask her to repeat herself frequently, as her speech has declined somewhat, but I understood the most important parts. She remembered I have kids and asked if they were with me. I explained that they're grown ups now, and that I'd come alone. She asked about mom, I explained that she died a few years ago, and that our dad died last year. She asked about our grandmother, and I had to tell her that she had died a long time ago as well.
"We're orphans now" she said. I was taken aback by her insight. Her world was books when we were children, and in the children's books of the mid 20th century, orphans often played central roles.
"Yes, Dori. But your sisters and brothers are still here, you still have us". As sincere as I was, could anyone who had been left in a nursing home for over 10 years, alone and without visitors believe this? Again, I braced myself and focused. I'm not ready to give in to tears.
It was obviously difficult for Dori to engage for more than about 5 minutes and I saw her fade. I wanted to get a look at her belongings, and found her closet. Going through it I found only clothes, a large coloring book and a Christmas coffee mug. No books, no puzzles. I opened the coloring book, and found a couple pages had been colored on, but there were no crayons. I said good-bye, told her I'd be back tomorrow,
I'd left home with a mission, to find a way for my siblings and I to become legally involved with her, and to help my brother secure her legal signature on a Quit Claim Deed. But that time I spent going through her closet made me realize my real goal. While we were talking, one of her questions was if I'd come to give her money. I asked her what she wanted to buy, and she told me stuff on TV. Her world has been reduced to a bed and a television. She needed to be engaged, even if for only 5 minutes a day.
Over the next three days I visited her two more times. I brought her crayons one day, and watched as she colored a page from her coloring book. I took it out to her nurse and showed it to her. I explained that she concentrated on it for several minutes, and asked if there was some way someone could spend even 5 minutes a day with her in an activity like that. The nurse seemed surprised, but willing.
It was a relief to get to my friend Mindy's house where I had arranged to spend the rest of the week, she is a speech therapist and is very familiar with the workings of these "systems" as well as special needs. Her input proved very valuable. On my last visit I brought flash cards and dominoes that Mindy had given me from her rehab business. She called them "fidgets" and explained different ways they could be used. I sat with Dori as she looked through the flashcards and asked her what the picture was, or the color of the picture, and when she couldn't guess, she flipped the card over and read the answer. I honestly thought she had lost her ability to read...this was an incredibly pleasant surprise. I told the social worker about this and asked if someone could spend time with her doing these activities, and she also told me yes, that she would speak with the CNA and ask her to this.
The other business went from bad news (to become involved I would need to become her conservator, a lengthy, costly, court procedure), to good news (we might possibly be able to become Powers of Attorney, legally able to do the same things as conservator, but requires only a form and a notary), to bad news (after I got home, was told POA was out of the question). Whether or not I pursue becoming conservator remains to be seen, I hope that my brother is able to find a way to handle probate on our dad's house without a Quit Claim Deed signed by her. And hopefully, the other issues we uncovered about her health care and handling of her social security income we can take care of with regular contact with her case worker and the social worker. We had found out that at one point, it was discovered that no one had monitored her income for several years, and allowed her funds to build up to a point that she was no longer eligible for her Medicaid benefits. She had to be taken off Medicaid and the nursing home and other medical expenses were paid from her bank account until it was completely depleted, then she was put back on benefits. None of her own income was used on her, or to improve her life at all. This is not something we want to happen again.
On my last visit with Dori, I explained that I'd be gone again, but that I would send her things that she will enjoy, and that I will be back. As we talked - and I may have projected my own emotions on her - but she had something that was almost like a facial tic that I'd noticed each time we visited, I'd see a sudden sadness, I'd hear her breath suddenly catch, and I'd see something happen in her face. Almost like a sneeze that doesn't make it all the way out...suddenly it would just be gone. That look was haunting, and I can't stop thinking about it.
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