#3: Making Lists

Guidelines. Dos (and Don'ts). How tos. How not tos. Golden Rules. Helpful Hints.

There are endless lists of ways to deal with folks diagnosed with dementia. We passed them back and forth in my family. "This one is good." "I like this advice." "The doctor sent this one." The advice they offer is all pretty much the same. I printed out this list:

• Agree, never argue

• Divert, never reason

• Distract, never shame.

• Reassure, never lecture

• Reminisce, never say "remember"

• Repeat, never say "I told you"

• Do what they can do, never say "you can't"

• Ask, never demand

• Encourage, never condescend

• Reinforce, never force

This is a good one, I thought. I had it at my desk. I tried not to look at it. One day, I squeezed it into a ball and threw it in the trash. Out of sight, out of mind.

I was better on the phone than in person. On the phone I would answer the same question 10 times--Peter is fine. I live in Colorado. Pete's great. His name is Amos, he's a Jack Russell. He's 12. Peter is skiing today. Out here in Colorado. Yep, still married. Amos.  12. I wasn't bothered by the repetition because while we spoke I was wiping down the kitchen counters or folding laundry. I congratulated myself on my patience and my multitasking skills.

Increasingly, my beautiful, immaculate, stylish mother stopped getting dressed. Stopped bathing. Stopped doing her hair and putting on make-up. Stopped moving. She smelled. Sometimes, when I was visiting, I would borrow a sweater from her closet and inhale the fragrance of the perfume she wore her whole life. Now, the chair she sat in for hours a day smelled rancid. My Dad would ask, "Chris, are you going to get dressed today?" His tone was shaming. So was mine, "Mommy we need to wash that nightgown." Either would set her off. Lists are easier to write than do.

My distraction skills were non-existent, "Mommy, I am going to do some wash, shall I wash your nightgown?" Nope. At night, when she would finally go to bed, I'd sneak in and grab her robe to wash. No such luck with the nightgown. I did not condescend. I did not try to reason with or force her. I simply stopped hugging her, and when I did, I moved away quickly. I could smell her sour smell on me. Peter has always said I have a heightened sense of smell, "just like your Mom." 

But mostly, I violated all of these rules. Every single one. Some more than others.
For a while, she was convinced my then 93-year-old dad was having an affair with their neighbor--a 50-something gal who had been like a fourth daughter to them. She stood at the window and said to me, "she pulls up in her car, and then he pulls up a few minutes later. They think I don't see." It was bizarre. At first I laughed, "oh, Mommy, c'mon." Item one, Agree, never argue. Agree with this, really? "Yeah, Mom, you're right, he's fucking the neighbor." Uh, no. I would look at her, say it was absurd, and leave the room. I left the room a lot. I didn't follow the rules, but at least I would try not to violate them. 

I am done with lists. 
Well, almost done. 
I have one more list to write. 

Plan your work and work your plan. Marv Levy

What if your plan is chaos? If you are planning for chaos? What if chaos is on the horizon. looming there, ready to pounce. 

I read somewhere that the best way to meet chaos is by thinking "if-then."  If X happens, then I will do Y. If Z happens, then I will do A. 

My last list is my defense against chaos. It is a list of rules.

One thing I am learning, as I watch my Mom decline is that there must be rules. Not rules for her. And not quite rules for me. Not yet. Rather, if I do fall victim to dementia, these are rules to make the world of those around me better, so that those around me don’t start to feel about me the way I feel about the person who is not Mommy. 

I am so afraid of becoming like her. I try to warn myself or prepare myself. But I won’t remember. And I need to remember. I might not have a choice but to suffer the same fate, to confront the same dementia. But I do not have to be like her. To remind myself, to instruct myself, I need to establish rules. Rules that I can understand. Rules that I write for myself and to myself. Rules that Peter can give me so that I am not a burden to anyone, and so that I can hold on to some sense of dignity.

Right now, there are seven rules. (But that could change.)

1.    1. Trust Peter

2.   2. Be Silent

3.   3. Get Dressed

4.   4. Move

5.    5. Watch the news, be in the world

6.    6. Read

7.  Do whatever anyone asks. Don’t ruin other people’s time.

How will I know to obey these rules? How can I convince myself of the need to follow them, to know, or believe that they are good for me. 

Letters. I will write letters to myself.  

A few months ago, there was a bit in the New York Times about writing letters to yourself (Melissa Kirsch, "What Would You Write to Your Future Self?"). The impetus described in the essay is not unlike mine--trying to convey to a future self something essential about us. Something that is being taken from us by things we can't control. Kirsch writes that unlike a journal, a letter is to someone other, "In a letter, you address another person. You’re making sure your thoughts are legible to them, explaining things that you wouldn’t need to explain to your journal." That seems counterintuitive b/c I am not writing to another person, I am writing letters to myself. But if dementia has taught me anything, it's that the whole notion of self and identity are upended, lost in the whirlwind of chaos. The another is me. But not me. Not anymore. 

So these letters, are about my Mom and me and dementia. It is my way my of thinking about and making sense of the world, of the journey I am on. One I did not choose and can’t quite control. It is my way to control the chaos that looms. Or maybe doesn't. What I know for sure is that I am not alone on this terrible journey. If seven million people suffer from dementia, I am not the only child who finds herself trying to make sense of the present. And the past. And the future.

#2: What the Sibyl Knew

"I saw with my own eyes the Sibyl at Cumae hanging in a cage, and when the boys said to her: “Sibyl, what do you want?” she answered: 'I want to die.'” 

These words open T.S. Eliot's glorious poem, "The Waste Land." Well, the Latin does. This is Eliot's translation. I've loved this poem for its richness and difficulty since reading it in high school. In the decades since, scenes and phrases from the poem have resonated at different moments. The opening words of the Sibyl in particular. In particular now.   

It's a tragic story. A painful story. When I was in grad school, just discovering feminist criticism, reading Elaine Showalter and Gilbert and Gubar, the Sibyl was a feminist icon punished by the patriarchy for her gift of prophecy and her rejection of Apollo. Standing up to men and power. A guide in The Aeneid at the margins, her power diminished.  

Now, as the daughter of a 96-year-old mother with Lewy Body Dementia, the Sibyl speaks to me in new ways. Deeper ways. More personal ways. Hers is a cautionary tale.  

In the Aeneid, it is Sibyl of Cumae who offers Aeneas a tour of the underworld. And she tells him how she came to be 700 hundred years old. When Aeneas promises to revere her always--"I will cause a temple to be built to thy honor and will myself bring offering," she tells him that she is no goddess, "I am mortal." And such is her tragedy. She explains how Apollo had promised her the fulfilment of a wish if she would consent to be his, "I took a handful of sand, and holding it forth, said, 'Grant me to see as many birthdays as there are sand grains in my hand.'" However, she continues,

I forgot to ask for enduring youth.This also he would have granted, could I have accepted his love, but offended at my refusal, he allowed me to grow old. My youth and youthful strength fled long ago. I have lived seven hundred years, and to equal the number of the sand-grains, I have still to see three hundred springs and three hundred harvests. My body shrinks up as years increase, and in time, I shall be lost to sight, but my voice will remain, and future ages will respect my sayings.  

Sibyl, what do you want? I want to die.  

Lewy Body Dementia (LBD) is a progressive brain disorder causing decline in thinking, movement, sleep, mood, and behavior. It is the result of abnormal protein deposits called Lewy bodies. It causes things like hallucinations, fluctuating attention, movement problems, and sleep issues. Among the sleep issues--acting out dreams. The doctors at the Adler Clinic at Yale are kind and clear. The aim is to manage symptoms with medications. Of course, the final point they make: 

There is no cure.  

Mine is not the only family to be devastated by LBD and all the multiple forms of dementia or Alzheimer's or Parkinson's or god knows what other cruel diseases. Diseases that shrink one's brain and one's world. I am sure, if I think back over the past 3-4 years, I could tick off the Kubler Ross-Kessler stages of grief that I have lived. Am living. We are living. All of us. Including my Mom.  

At first, I would tell folks, "My Mom is a happy demented person." And she was. Her shitty memory was a source of humor for her. She'd preface questions with, "Did I already ask this?" and on the phone calling me in Colorado, "Sweetheart, I can't remember yesterday much less last week." She was just a little senile in a cheerful, goofy way. That's what we said. 

Dementia makes everyone angry. Robert Hayden, in his wrenching poem, "Those Winter Sundays," writes of the "chronic angers" of his boyhood home. I grew up in a home that was filled with far more laughter than anger. The anger in Hayden's poem made him wary, kept him on edge. As my Mom's disease progressed, we all became tentative. When would she explode? When would a vicious anger erupt (and as quickly pass). Her anger, her unreasonableness, made me angry and resentful. Trips back home to Connecticut were exhausting. Always waiting. Always wary. Never sure what word or deed would trigger attacks that became increasingly cruel, increasingly vicious.  

The bargaining came later.  

One of the symptoms of the disease is depression. One of the effects of the medication is depression. My Mom, who would never slow down, my Mom, who raked leaves incessantly, my Mom who vacuumed multiple times a day, my Mom who made the treadmill a routine, now sat in front of a blaring television. She'd ask, "what are we going to do today?" And when the time came to do it, she would refuse. No one had asked her, told her, or cared about her. My Mom, who was dressed and made up and stylish stopped dressing and making up. And watching her wither, watching her disappear, watching her become a stranger made me depressed and irate. 

When you live 2000 miles away, out of sight out of mind is easier. Not easy, easier. My Dad carried the load, and he embodies "acceptance." He sat through her withering tirades. He endured her shifting moods, clinging, I think, to those moments, steadily decreasing, when she was the wife and mother we loved so very much. He made her meals that she did not eat. Rejecting them with nastiness and complaints. He ensured she took her medications and saw her doctors. His world became circumscribed by her wants and needs. Anger shrouded that world like a mist. But my Dad seemed to skips stages 1-4. He embodied acceptance. Until he could not. And after three years, she was placed "in care."

Missing from the Kubler Ross the list is loneliness. And fear. I am terrified of the future. I bargain with the fates, with god, with my own body. At 2AM, when I am wide-awake wracked with guilt and fear and anger, I realize that,in some things--that is this thing--I am alone. I reach out and put a hand on Peter's back for comfort. He sleeps so soundly. Amos, my sweet pup, sleeps soundly. I am the only one awake.  

So, I make lists.