#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.