It’s 5 am and Jamie is sound asleep in her room. I’m stealing some time to write about her beautiful brain. I’ve had a front row seat to Jamie’s struggle with brain function for nearly four months now, and, rather than thinking of her brain as a problem, her brain is precious to me: wounded and vulnerable, every little function valuable and dear. You might be interested to know how dementia, or Alzheimer's, can be observed in everyday behavior. It's as fascinating as it is tragic.
With a great deal of love, the gift of patience from raising six kids, and the experience gained from my daughter Heather’s traumatic brain injury, Jamie has improved wonderfully regarding her attitude and emotions. She greeted a new caregiver, a stranger, at the door yesterday with a hug. She wept for joy when a caregiver used a playing card to help her recognize the number 2. When asked how she is, her usual response is one word, “Happy.” She smiles all the time. She quickly reflects whatever emotion or attitude you present to her. Smile at her, she grins, laugh out loud, she joins you. Why would you ever be cross or impatient when faced with that miracle?
Jamie is o.k. with sitting still and thinking. She does it a lot. We don’t know what she is thinking, but when she tries to speak there’s something important there, hoping to emerge for us.
She begins with words familiar to us, like “I was just thinking,” and when she just can’t say what she wants to say, “godammit.” Normal phrases like, “I’m trying to tell you…” precede her attempt to communicate an idea. This tricks you into expecting the next phrase to be just as clear. But what follows is a hesitating stumble over words grasped from the air like random apples hanging from a tree. If all of the apples were picked in the right order, you’d have a beautifully expressed thought. But you can see her looking at all those apples, knowing they have something to do with what she means to say, but she just has no idea how to choose them in the order they belong, or even how to pick them and say them at all. As soon as she moves out of rote behavior – something she’s done or said a million times – she’s lost.
But there are positives. It’s a joy to spend wordless, carefree time with her, to share the space of a mind without filters or agendas. Someone who appreciates with absolute sincerity. This experience has given me more sunsets than I’ve witnessed in the last ten years. I’ll put a movie in after dinner and we’ll get comfortable on the couch and she’ll turn to me and look me in the eye and smile thoughtfully, expressing something with simple words, in her way, that I can understand. Something about art or our relationship, or simply, “I like it here.” The movie is no distraction for her. She’s in her own mind at all times. But I always wish I knew what she was thinking.
I’m telling you all of this as context because yesterday she experienced a decline. After a series of frustrating attempts to do familiar things, she used her hand to mimic walking down stairs and said, “I’m going down.” She wept woefully and I took her in my arms. “Maybe this is just a bad day. You’ll do better tomorrow.” “No.” she said with a finality that broke my heart. Who knows about tomorrow? But she knows her journey is one of continuous decline and she feels the ground slipping beneath her.
It started after everyone left for the evening and I was cooking dinner. She was on the toilet and I heard her faint call. I’ve learned to remove the pan from burner when she calls me. I quickly arrived to see the toilet paper unrolled onto the floor and to smell that she had a bowel movement. She looked at me with utter desperation and shook her head. She didn’t know what she was supposed to do. I handed her a nicely wrapped little bundle of toilet paper and told her, “Use this to clean your butt, just like you’ve always done since you were little.”
She nodded obediently but her hand did not obey. She rubbed her knee with her other hand and stood up, walking toward the trash can with the tissue, which is what you do with trash, like tissues.
I walked her back to the toilet and asked her to sit down. She looked at me like she didn’t understand. I said, “You have to clean your butt. Sit down so you can do it. After a few seconds I gently pushed her thighs so that she got the idea and sat down again. She cleaned herself a little and showed me the dirty tissue.
“That goes in the toilet,” I said, taking her arm and aiming it around back. She hesitated. “It does?” and she looked very confused.
“Yes, just let go of it. Drop it.” And she did. I told her she wasn’t done and handed her another one. It took a lot of patience because that “aha” moment never came. I walked her through each step, each time. After the fourth one she showed me was clean, I breathed a sigh of relief.
Unlike cutting her food, which I don’t mind doing, and putting her clothes on, which is no problem at all, and which she can on occasion still do some parts of, cleaning her butt is something I really want her to do herself for as long as possible. Hence, my extreme patience with guiding her through the process. I’m hoping tomorrow it comes back to her.
Many functions like using the toilet are rote: brushing your teeth, rinsing your mouth, taking pills, buttoning a sweater, even tying the belt on a robe… these functions just happen. You don’t realize it because you’ve been doing it for so long, but you actually use a different part of your brain to do something out of habit. I guess that’s why forming good habits is one of the keys to success: it reserves your higher brain function for more important things like forming thoughts and communicating them. When she doesn’t have to think about it, she can often just do it. It’s like a miracle, after you’ve observed her struggle with any of these, which can happen at any time when something in the routine gets thrown off.
One of the most important tasks she must do for herself is swallow her pills twice a day. Three after breakfast and about eight after dinner (most of them are supplements). Taking her pills can be a smooth ride.
After dinner I tell her not to get up, or to sit back down, and put a white dish of pills right in front of her and hand her a glass of water, or, if she motions me to back off, I put the water down on her right side. She has let me know that hovering does not help, so I set her up and then sit across the table and observe, in case she needs help.
She looks over the scene – a plain placemat with two objects on it, a dish of pills and a glass of water. She slowly looks from one to the other. Then, taking a deep breath of bravery, she lifts her hands to perform the ballet of taking pills. The hands each have their role. The left hand will pat the plate and find a pill. The right hand will find the glass of water and raise it off the table. Both hands now hold something important and she knows there’s a job to do, but it’s not easy. She looks at each of them in turn and, sometimes she just starts drinking like crazy, going through half the glass. “Don’t forget to take the pill,” I’ll remind her gently. As if I woke her up from a dream, she jerks her head away from the water and looks at me, “Oh!” she says, and looks at her pill in the waiting hand, as if it is a complete surprise that she’s holding a pill. Then she takes it and proceeds to take the rest without a problem. In this way she often runs out of water before taking her pills. Once she starts drinking, sometimes she just keeps drinking because she knows how to do it. Which is fine. Water is good for you. Automatic pilot is a familiar problem. She needs to be reminded that she might be done brushing her teeth after, eyes closed, she seems to have fallen asleep to the rhythm of it.
Some days she’ll put down the glass and reach for a pill with her “water hand,” then her pill hand waves around looking for something to do, so she puts the pill down and her water hand rests humbly on the table, as if punished for doing the wrong thing. Then the pill hand begins reaching for the water – the thing that was missing from the equation a moment ago. OK, she’s got the water now, but it’s in the wrong hand. She looks at the pills in frustration. Why isn’t a pill in her hand? The water hand is not holding the water so the pill hand can’t get the pill. She puts the water down. By now I’m at her side. I put her water in the usual hand, “There you go!” and everything starts to work as it should.
Sometimes she simply doesn’t see the glass of water and desperately asks for. “I need water!” a pill in her pill hand as she implores desperately, the water hand she’s waving just barely missing it, so I lower her hand to touch the glass and she picks it up, “I’m sorry.” The struggle is real.
After dinner last night I put her little white plate of pills in front of her with her glass of water. But there was also a folded napkin on her placemat. She was confused by the third object. She picked up the water and looked at the napkin, then the dish of pills, then the napkin, her left hand hovering over one then the other, like a helicopter looking for the landing pad. I jumped up from my observation post across the table and took the napkin away. She landed on a pill at last, and began the ballet, each hand doing as it should in the proper order.
Something new last night was that she recognized that the napkin threw her off. She also recognized that this was a sign that her brain is not really functioning well. When she came to help with the dishes, which is always a struggle anyway, she was particularly frustrated by what seemed like her normal behavior – not knowing where to put the fork in her hand. The silverware basket in the dishwasher might as well be a Rubik’s Cube. The additional level of dysfunction came when she forgot she was holding the fork in her right hand and removed a bowl from the dishwasher with her left hand, as if it was time to take things out, not put things in. I was very kind and patient when I said, “That stays in. Here, put the fork in, and touched her right hand with the fork.” She looked at the fork as if she was very surprised to see it in her hand. I think that’s what really threw her off.
“I can’t do it,” she said. So I said, “Like this,” and put another fork in the basket. She quickly chased my fork into the basket with hers, as if she’d lose the moment had she hesitated. For the rest of clean up she took her time, got things done as well as she normally does – glasses placed right side up, plates askew in the rack – all of it easy enough to redo when she’s not around later.
The final blow came when we were folding laundry to an Indiana Jones movie. We had changed into her pajamas, brushed her teeth, and, as is our way, were about to spend a half hour or so relaxing before her bedtime of 9pm. The pile of laundry was on the couch, but she prefers to fold on the floor where she can spread out comfortably. I gave her a little pile of laundry to work on. Usually she needs plenty of time to flatten something out, then think about folding it over, then over one more time, and whatever it is, it’s smaller than it was and you can put it in a sweet pile to refold later. She usually enjoys the accomplishment.
But last night she did not. She couldn’t remember how to fold. She laid the first item out flat, and kept flattening it. Then stopping. Then flattening it some more. Then she started crying, “I don’t know what to do,” she said, plain as day, as those familiar phrases always are. I reassured her that it was ok, but she insisted that it’s not ok. She picked up something else and flattened it. Then nothing. No fold over. Just the flattening. Her quiet tear became a sob, “I’m going down,” she said, taking the effort to show me the stair steps down, down, down, to be sure I’d get the meaning.
My heart was breaking. There’s no pity in the world like seeing someone you love in anguish, and her anguish was deep last night. We had spoken several times over the past month or so about dementia, her brain function being compromised by disease, so she knew what this was about. She was expressing very clearly that she feels the dementia gaining ground.
What could I do but hold her and love her, and tell her I’m here for her and we’ll get through this together. I tucked her in bed, tears still rolling quietly, as she whispered, “I love you so much.”