One of the most compelling reasons for living with Jamie rather than putting her in a nursing home is
that when she has a good, lucid
moment, her self awareness surpasses that of many completely healthy adults. I’ll give you two examples from this weekend.
Jamie on Memorial Day,
wearing a necklace we'd
Jamie suffered a traumatic experience as a young child. She was born in Puerto Rico but her father moved the family to Cuba shortly after she was born. Jamie was in Cuba during the revolution and remembers bombs and gunfire and other children being scared and suffering. In one particular incident she became briefly separated from her family during an attack. No one knows exactly what happened or how long she was lost, but when that memory comes back she is panicked, fearful and even angry if we don’t listen to the story again, empathize and validate her experience. Dismissing the incident as something she's already told us, something in the past, or nothing to worry about now, is not the answer. We must acknowledge her fear, reassure her that it was a horrible experience and she should not have had to suffer it. It was horrible. No child should have to go through that, and so forth. She then begins to calm down.
Well, this weekend, after a wonderful (but perhaps too-busy?) morning, as I was making her lunch she grabbed my attention, and with very expressive facial expressions and hand gestures, told me she was about to go into that black hole of memory. The Cuban rebellion was about to come alive again. She was panicking BEFORE it hit, warning me that it was coming.
I didn’t know at the moment what she was trying to say. She said, “Nasty. I’m nasty. I’m going to be nasty!” and screwed up her face like she was mean, angry, even vicious while making a clawing gesture with her hands. It was what parents do to mimic a tiger while telling a story to their children. But this was serious, like she was warning me that she was going to be mean to me. In hind sight I believe she was sensing the coming emotional tornado of her flashback. I grabbed her and hugged her and told her it was ok. “I don’t care if you’re nasty or say mean things. I love you no matter what. I know you love me no matter what. Don’t be scared!”
A moment later she was there in Cuba, a little girl about eight years old, terrified and alone as bombs burst around her. A caretaker came to our condo just as this was erupting and Jamie began to be comforted by the two of us assuring her that we’re here for her and we love her. But she didn’t want to be calmed down. This went on for about ten minutes with Jamie insisting that she was right about how terrible and terrifying this is. “NO!” she finally shouted when one of us told her it was “OK,” and slammed her hand down on the kitchen counter. When that happened I went and got half a Klonopin, which I have never given her before to calm her down, and she took it without question. I wasn’t willing to risk violence escalating and she had gotten plenty of it out of her system already. I was hoping the pill would do something for her, but, like a placebo, it almost instantly helped – sooner than the pill could have had a medicinal effect.
The episode ended with her panic subsiding and our comfort received. She had a wonderful afternoon. Much later I remembered what she had told me only seconds before the flash back hit her. “I’m going to be nasty!” Whatever that meant to her, she spoke it moments before she became extremely emotional, immersed in her childhood trauma. She's never warned me like that before, so I can only imagine now that she sensed the episode coming on.
This is what most intrigues me. Moments like this tell me that although this woman is a victim of severe brain damage, although she can’t recognize the glass of water I put in front of her but reaches for mine across the table, yet she explains to me on a regular basis exactly what having dementia is like. And it breaks my heart. And I fall more and more in love with her. I’ve never used the word pity much in my life. Not sure why. But for some reason it’s the word that constantly jumps to mind when I go through these episodes with Jamie. I pity her beyond words.
Second instance of self-awareness:
Monday night, we went to a sweet Memorial Day bar-b-que on the dock with about 20 neighbors. I know that she listens and understands a lot. But I believe the moment that stood out to Jamie was when a friend of ours, a woman, jokingly shouted, "That's MY man! Don't touch him!" after her husband received a lot of praise for opening up the evening with a very moving Memorial Day prayer. Throughout the evening there was much socializing and feasting and Jamie had enjoyed the attention of friends stopping by to say hi to her and talk to us. We were joined at our table by about six or seven women and, although Jamie didn't usually participate much in the conversation, I think, in hind sight again, that Jamie was really thinking hard and had another self-aware moment.
She emerged from the bathroom, as I was putting her to bed, with her two wedding rings in her hand. Since my father passed away she had seen her former husband Eric’s wedding ring, and been wearing the two of them. She was trying to hand me the two rings but I asked her why she took them off. With the hand that held the rings, she gestured toward the kitchen, which always means she wants to throw something out. She throws out everything. Luckily, the kitchen garbage is the only place she does it, so we know where to look if we see she’s been “cleaning” when we turned our head for a moment. Earlier that day she had tried to put a decorative cushion she doesn’t like into the kitchen garbage and I rescued it for donation. “Someone might have a fire and need any ugly pillow for their couch.” Luckily she agreed.
Of course I wasn’t going to throw her wedding rings out, so I took them and told her we’d save them in the jewelry box in case she wanted them later. They’re very pretty. Finally, after I had shown her where I was putting them and shut the lid, she got out her message, “I want to me ME!” she shouted!
“Oh, OK! That’s great! You’re an independent woman. You don’t need a man.” She grinned, I got it right. Now if that isn’t a self-aware gesture I don’t know what is. She’s done mourning. She’s ready to move on. She’s been mourning both of her husbands since my father passed three months ago. At times she’d grieve Eric, at other times Richard. But she always mourned the loss of someone who adored her, who pampered her and spoiled her, which both of them did. It’s very easy to do with Jamie, as sweet as she is. I can only imagine that our friend's declaration, "That's MY man!" had struck a chord. She doesn't have a man. Well, maybe she doesn't need one.
We walked to her bed and she crawled in, a grin on her face. “Just us!” she declared as she lay down her head. “Yes, “ I assured her, “Just us.”