Sunday, November 20, 2016

Time is a Snowflake

It’s exactly 10 am on Sunday, November 20th, 2016. I write to you from the frontlines of the battle against Time. I hold in my hand a snowflake, just caught moments ago, and watch with grief and pity as it rapidly melts before my eyes. I try with all my might to slow Time down, to make it obey my broken heart, pleading for mercy and opportunities now lost… and again… and now again.

When you raise a child you anticipate the firsts with a certain anxiety. Why? Your child will inevitably crawl, stand, walk, say “mama.” But if not, something is terribly wrong. Is it confirmation of health, of progress? I remember well the years of diapers and baby food, firsts upon firsts at every age of my six sprouts, as they sprouted bigger and more accomplished with each passing month. Time was a frenemy then. Stop! Freeze this moment! I want to remember forever that first laugh, that first grasp of the spoon and successful entry into the mouth with sloppy, sumptuous apple sauce. No, hurry up! Move faster! When will they finally talk, tell me something worth waking up at 5 am for. When will they walk? They get heavier every moment. Hurry up and get us past these terrible threes – I have yet a few things in the house unbroken!

Now, as Alzheimer’s, that thief of self, robs Jamie of her joy, her creativity, her words, her peace… I chase Time like a phantom that disappears at every grasp I attempt. I’m left holding tight to empty air as Time races away. Behind the door, around the corner, let me catch you! Let me hold you down for just... one... day. Time has become as elusive as the man in the house that, on a bad day, Jamie fears and we keep banishing with confident bravado.

I promised I would write about an average day. My blog posts seem to flow as catharsis after a day—or a moment—of anxious negotiations and fumbling for balance and peace. Heroic battles against phantom threats and broken memories warrant an entry in the journal of the quest I’m on. Every celebration, or test of wills and patience, is worth recording, and, in time, reflecting on when specific memories are lost in the sea of life’s details. I need to share these days with you. I have not had a guide like this, an actual detailing of events, words spoken and actions taken, only vague descriptions of symptoms and suggested strategies. Helpful, but lacking in humanity. Humanity is what I need right now. Every day. Every tweak of words and touch that might bring an embrace or a shove. In the end, those are the moments that count and that is why I record them.

But these moments are piling up now. The need to record them grows in urgency as Alzheimer's has, tragically, sped the pace of Time for her. What is this magic trick, with which months have become weeks and weeks days and days hours? This is nothing like childhood. These firsts are tragic. And, one by one, they will become heartbreaking finalities. With a little reprieve, on a good day, she might say a couple of words strung together. On a good day, she might giggle at the antics of the puppy, or grin when we tell her how gorgeous she is.

But I know we’ve had our last social event at a friend's house. Our last dinner at a restaurant. Those last events were easy to identify. She was miserable. I remember those moments effortlessly.  I can’t forget the twisted expressions, the embarrassment as food fell in her lap or tears burst suddenly, unwanted—that predator, fear, pouncing without warning. We’ve had too many “lasts” now, but every failure is not a finality. Not yet. There are still good moments, a good moment making it a good day, in spite of the rest of the day. You never know when a good moment may come, so you set them up again and again, set up the possibility with love and compliments, a little humor, a picture book, a giggle, that you hope will be contagious, at the cat’s taunting of the dog.

Today is a typical day so far. Typical for where we are in this other dimension where Alzheimer's is a stricter boss, puffing out his chest, demanding Time obey an accelerated schedule, robbing us a little more each day than expected. Today there has been no drama. No charging at windmills. Today I sit at the dining table trying not to weep as Jamie rests in bed.

This morning she woke and let me help her in the bathroom and put on her robe, but wouldn’t come out, insisting that she stay perched on the side of her bed. I left her there and made her a yogurt smoothy. After a few visits to check on her, she let me walk her to the dining table, where she insisted on sitting sideways in her chair. Most likely for a quick escape if she needed to flee to safety from me or some other phantom she can’t articulate. I put the smoothy on the table, but she didn’t want to drink it out of spite or the assertion that she can do whatever she wants, including not drink a delicious smoothy. But I know she loves them.

I approached her once or twice as I cooked her breakfast, “I know you’ll love it! You’re gonna love that smoothy!”

Finally, I put it in her hand which, shaking as she worked to close her fingers around it, found her lips with the cup and she drank it all down, capturing the yummy treat in one long series of rhythmic swallows. Perhaps she knew that if she paused, her hand may have ceased to cooperate. I’ve learned that starting out with putting something in her hand just irritates her. She wants to believe she can still do all these things. Let her sit and think about it. Let her try to make her hand obey her appetite; her dignity deserves this.

Last night was the first time I fed her an entire meal. This is not a “last.” She will have better days still, when the spoon cooperates and a little pile of deliciously prepared food holds into it and finds entry between her grasping lips. 

But last night every spoonful tipped its contents out—forks long dismissed as useless hardware stabbing at nothing. Scooping is the way to go. But scooping at a bean or a bite of fish is tedious work, even when the bowl is full of them. Is the spoon full enough yet? Is something in it, or is it empty? If I tip it to snag that other bean, will the marinated salmon jump out in protest? These are the challenges we battled last night until, finally, with a broken heart, I stood at her side, gently offering a spoonful of rice, beans and salmon. With awe I saw her lips part and her head tip ever so slightly forward in the universal gesture that says, “Yes. You may feed me.” A moment I knew would come, but I planned for a year from now. Not last night. Not yet. She hates it when I try to feed her. She’s let me pick the food up with the spoon and hand it to her, but not put it to her lips. It’s too soon for that. She’s supposed to close them tight in stalwart defiance of dependence… it’s too soon. 

After last night’s dinner I resigned myself to finger food. Nice solid bites in pieces she can manage. Not rice. Not pasta. Not so many things. I know she finds being fed, still, a humility and I have to find a way to spare her that until she’s ready to resign to it fully. The occasional last bite. The tempting first bite to entice the appetite, yes.  But is it time for full meals to be fed to her? I have to fight it.

This morning, after she handed me her empty smoothy cup, I gave her homemade hash browns in formed pieces, bacon, a cheese omelet I cut into finger-worthy bites and raisin toast. No spoon or fork in sight to challenge her. She ate it all but a few bites. I was happy. She was fed.

There are only a few words left now. Two of them are No and Yeah or Yes. She didn’t want her morning pill. I didn’t hesitate to put the water in her hand and pop the pill in her mouth. She didn’t bite me. She obediently drank and swallowed it. I reassured her, “I will only insist on something if it has to do with your health or your safety. I respect you. I love you. You can do whatever you want today, but you have to take your pill.

She refused a shower. I handed her a moist wipe and told her she had to clean herself really well if she wasn’t going to take a shower. But that’s not really an answer. I have to bathe her. I showed her the wipe was slightly yellow. “See? You’re a little dirty. A shower will feel really great.” “No.” She said it clear as a bell.

All she wanted to do was get back in bed. So here I sit, writing, grieving, heartbroken, knowing that, in time, lying in bed will be all that she can do.  At 11 a.m. she was still in the bed, eyes open, staring at nothing. I checked on her, talked about her cat on the bed, just a few feet away, trying to get her to see him. I’ll love her up the best I can without seeming to patronize her or challenge her will. I make sure she’s safe and healthy and, just as importantly, the master of her day.

While writing, I’ve paused to throw the ball for the dog. I’ve taken him out into the yard, I’ve melted chocolate on the stove, dipped pretzels and coated them with toasted nuts and chopped cranberries. I hope she likes them. Things she can eat with her hands. A treat she might recognize as a gesture of love. Maybe.

Then at noon, as if it was the most natural thing, she came strolling out of her room, the dog’s leash in hand and a smile on her face. The dog must have jumped on her bed and started licking her. That can get her out of a funk. It’s a beautiful thing. She had a little bit of an odor, so I walked her to the bathroom and cleaned her up, again encouraging her to go for a shower – promising the heater and that she would not be cold... how good it would feel. A real sales pitch. She relented.

The shower was difficult. Her walking is unsteady now. Stepping over the 3 or 4” threshold took a couple of tries. I knew I would have to do most of the cleaning, but I handed her a soapy washcloth and let her work. She used to go to town on her knees for some reason. I’d joke that she was going to rub the skin off. Today she just patted them a little and motioned that she was done. When she was all clean and her hair washed, the struggle to get her out of the shower was intense. She was shaky on her feet, and I’m not strong enough to lift her. I had dried the front of her while sitting on the shower bench, and she was clutching the towel for modesty. This was hindering her exit. I reassured her she could have it right back and took it away so she could concentrate on standing up. With a little support and a lot of self-doubt I got her out of the shower and onto the toilet seat, covered with a dry towel. The bathroom was warmed by a heater and the rest of our bathing adventure went off without a hitch or a struggle.

Now, as I finish this record of a typical day, it’s 1:30 pm. She’s resting on the couch, insisting with her simple, "No," that she doesn't want any lunch yet. But she's fresh and clean, with a loving dog for comfort, listening to soothing music without lyrics. Lost, too soon, to a realm of thought that none of us will ever be able to describe, if we ever journey there.


Linda Jones said...

Dear Galen, You are an amazing, loving angel. Your ability to articulate Jamie's experience is astonishing and very moving. I am awed by your devotion, compassion, and respect for her dignity and her unique journey. God bless you, both of you, always, and know that there are many who pray for you on this impossibly difficult path.

nancy bucenec said...

The love and patience you give Jamie is overwhelming to me. My mother had dementia about the last year of her 91-year life. How tragic that Jamie's young life is being taken by this tragic disease. Bless you, Galen.

Norma said...

I am not surprised that you so eloquently capture this experience, both from Jamie's perspective as well as from your own. Are there any social services available to you that could help in some of the activities of care? (I think particularly of trained professionals who can deal with bathing.) Admittedly there might be issues acclimating Jamie to anther person's interventions, but I'm also thinking about how to avoid caretaker burnout in you.