Saturday, January 12, 2013

From charisma to dementia

"Well, it isn't gonna be that way, it isn't gonna be that way."

It never fails. I go to visit my mom and I come home with my heart hurting. Not simply because she has dementia and she is almost 1,000 miles away and far too frail, both physically and mentally, to be moved. Not because her life has become more existence than life, or that she is merely going through the motions of living, or that if she could will it, she would go to sleep and never wake up. And at this point, who could blame her.

No, my heart hurts because, somehow it is always at the moment of leave-taking that she has one of her rare moments of lucidity. Then she gets a look of panic on her face and asks me where I am going and forces me into a gentle lie. "I'm going for a little ride, but I'll be back soon." Banking on the hope that, once I am out of sight, I am also out of mind, and that two hours and two months are not all that much different in the twilight zone in which she lives.

Much of the time I spend with her leaves me with the sense that while she does know who I am and that I'm there, she really doesn't care, or perhaps it is that she doesn't have the energy to care. She has difficulty carrying on more than the simplest conversation. Sometimes she will start a sentence, but stop after a word or two, because, I assume, she has lost her train of thought and doesn't know what she meant to say. At those times she will look sad and shake her head. I can't know what is happening in her brain, I can only speculate that she knows she is confused and is upset that she is muted by her confusion.

I would describe my mom in the past as being charismatic. People liked her, they really liked her. She had a real interest in people and was a good listener and had genuine compassion for others, all qualities I aspire to and sadly fall short of. Even as she is today, she is liked by the staff at her assisted living residence. She has none of the combativeness often associated with dementia. She can no longer listen or empathize, but she still responds to kindness with smiles.

It is tragic that she fell so far so fast, the more so because it didn't have to be this way. Maybe. A few years ago I started noticing signs that she was suffering from memory loss. She repeated herself to a degree that struck me as beyond the natural aging process. More than that, she asked questions repeatedly and when answers were given yet again, she never acknowledged any memory lapse.

My grandmother, her mother, succumbed to dementia in her late 80s, and my uncle, her brother was diagnosed with it at about the same age. I argued with my mom, had a sort of intervention of one, because I knew there were drugs that might help and the earlier they were taken, the more help was possible. My mom was in denial. She acted as if it was a stigma instead of a medical condition. Once I said to her, "well, Mom," the good news is if you do have dementia, you'll never have to say you're sorry because you won't remember this conversation."

How I wish I had been wrong.

Her case was not crystal clear. I found an online test for Alzheimer's and she passed it easily. Her forgetfulness did not interfere with her daily life. She had no profound communication problems, personality changes, mood swings or paranoia. She never got lost in familiar places nor did she have trouble with basic tasks like cooking and housekeeping. Her hygiene was impeccable and she did not lose things or put them in inappropriate places. She knew what month and year it was and who was president. She had not lost interest in things she usually enjoyed.

And the clincher, she still paid all the bills and reconciled the checkbook every month, to the penny.

I still had doubts and I continued to press her to at least consult a doctor. At one point, she turned to my dad and asked if he thought she had symptoms of Alzheimer's. God bless my dad, who has never been a worrier or one to upset any boats. "I think you forget things you should remember," he said.

I didn't know it at the time, but 6 months before my dad died, my mom underwent cognitive testing by a specialist and scored an 85 out of 100, leading to a diagnosis of "mild cognitive impairment." The doctor recommended Aricept, but my mom, never one for preventive medicine or prescription drugs, declined to take it. She had heard about unpleasant side effects. My research after the fact was that most reported side effects affected less than 10% of users and were generally transient and non-life-threatening.

After my dad died, in November 2010, my mom went into a tailspin. I have no idea how she did it but the day before he died she swam 20 laps and played duplicate bridge. Immediately after his death she appeared mentally competent, and although she repeatedly said, "I wish I could go to sleep and never wake up," we never dreamed that she would act on that wish.

While we were there for the funeral, my mom admitted that she had turned the bill-paying duties over to my dad, along with the checkbook reconciliation responsibilities. "I just didn't feel like doing it any more," she said when asked why. My brother and I set up online access to all her bills and bank accounts and assured her we would help her manage everything with which she needed help. Mom seemed confused by what we were doing on her computer, despite our patient explanations, but we assumed she was still somewhat in shock from my dad's sudden death, if dying can be considered sudden when you are 3 weeks shy of the age of 90.

Hindsight indeed has 20/20 vision. My mom complained of sleeplessness so we picked up a bottle of Tylenol PM along with the groceries. The first bottle mysteriously disappeared and after a search we concluded that it must have been accidentally thrown out with the trash. My brother stayed an extra day after I flew home and took my mom to the grocery store where she stocked up on groceries and a bottle of Unisom. Two bottles actually.

I hold my brother blameless about the consequences because nothing my mom had ever done would have led us to suspect what she would do. But I think if I had been there, warning bells would have gone off when the woman who didn't like to take medicine reached for the second bottle of an over-the-counter sleep aid.

Perhaps we were in too much of a hurry to rush back to our lives, our jobs, our homes and families. Perhaps, with a failed marriage under each of our belts, we lacked the ability to comprehend the effect of the loss of your partner of 61 years. But truthfully, my mom's actions, her botched attempt to take her own life with a deliberate overdose, was totally out of character, at least in the context of a person not suffering from full-blown dementia, as Mom - and Dad - led us to believe was the case.

My brother and I have had many conversations in the two years since the event that landed my mom first in a geriatric psychiatric facility and subsequently in an assisted living facility. What we should have known, suspected, done differently. I hold myself more accountable than my brother holds himself, and it is spilt milk anyway, water under the bridge, Monday-morning quarterbacking. In any case, the will to live that my mother lost when my dad died, two years and some weeks ago, has remained stubbornly lost.

Next time, more in the continuing saga of mom's free-fall to the seventh level of hell. OK, it's not really that bad, she is well cared-for by the wonderful staff at the assisted living facility, the compassionate staff of the hospice program in which she has been two years come May, and her private duty aide.

But right now I am emotionally drained and looking forward to some sweet oblivion involving soda lime glass and fire.

"You've traveled so far
The wind in your face
You're thinking you've found
The one special place
Where all of your dreams
Will walk out in line
And follow the course
You've made in your mind

Well, it isn't gonna be that way
It isn't gonna be that way."

Steve Forbert

Monday, January 7, 2013

Beads of comfort and tribute

"You can play a crucial part, carry justice in your heart, and we’ll be there to get your backs."

I can't believe it. I'm caught up for a minute on Etsy and Ebay and Facebook and Lampwork Etc. and email. The house is empty again, except for Neil and me and L cat and Z cat. My stepdaughter is married and off to Hawaii for her honeymoon, father-in-law packed off to New Jersey and my kids safely home in Keller and Austin.

I lit the torch today to show my father-in-law how I make beads. He had this idea that I should make large lampwork vases and sell them for big money. I tried to explain thermal shock, coefficients of expansion, compatibility and annealing to him, but he just wasn't hearing it. He'll be 84 this year in his defense.

He was quite excited when I suggested a bead demo and I swear, if he didn't have to leave for the airport just as I finished my plunged floral, he would have sat down and made a bead himself.

As long as the kiln was up, I made a few more beads to keep the floral company while Neil made his second round trip to the airport today. I've been making a lot of long tube shaped beads, about 2 inches long, and considering whether I want to try to go longer. I'm not super duper happy with my shaping and I doubt this shape will sell well but I'm trying to put selling on a side burner and make what I feel like making.

After the December 14 mass shooting in Newton, I made 26 angel beads. I typed a little note explaining that the beads were handmade by me in tribute to the innocents who died at Sandy Hook, offered as a tiny token of comfort, with my compassion and love. I printed the note on labels and stuck them on the back of my business cards and put each one in a little organza bag, 18 pink and 8 blue.

The day I mailed them I read that the town's infrastructure was being overwhelmed with gifts from teddy bears to Christmas trees. In addition to memorials placed about town, items were being sent to a warehouse and stored on pallets. Newton officials asked that people stop sending things and make a donation to charity instead or donate the items locally where they are needed.

My beads were already in the mail by then. Not that I really thought they'd mean anything to the families, if they ever actually received them. I know I did it for myself. It might have been wiser to donate them to Beads of Courage in honor of the Sandy Hook dead. I just typed "victims" but I just don't like the connotations of that word. They are the dead, like those who lie in Flanders Fields.

At any rate, I made the beads because there really was nothing I could do that would make any difference, so I did the thing I know how to do. One of my online friends who is a beadmaker had not been able to light her torch since the events of December 14. It might have been the same for me but making the angel beads somehow allowed me to keep going. Originally I was going to pace myself and make 2 or 3 a day, but I wound up making 21 the first day and 7 the next.

I don't think I will make any more of that design.

Tomorrow I have a day to make beads before we leave for Florida on Wednesday. I hope I wind up with something gratifying in the kiln. I'd like to think I am moving forward with my art. I wonder about those people who find a style and just keep making it over and over. I go in cycles and get obsessed with a shape and a design, but I still have to mix it up a little. And eventually I get tired of it anyway. Sometimes I will revisit it a year or two later.

I might make some hearts tomorrow. Hearts were the first bead I mastered when I started selling beads, hearts with trailing vines and stylized raised flowers, and I was sure they were going to be big sellers. I was surprised when they were not especially popular, although looking back at those early efforts, I understand. Maybe I will do better now and maybe I'll look back again in a few years time and roll my eyes.

And I'm not done yet with the tube beads. It's funny, I look at other beadmakers and there are some whose beads take my breath away, some whose every new concept is unique and a winner, some who constantly come up with new twists on whimsy, many who are so original and recognizable that you immediately know when you see the bead who the artist is.

And then there are other beadmakers who are entirely competent and make perfectly nice beads but that divine spark is missing. And I'm so afraid that I'm one of them. I fear that no matter how many years are under my bead belt, no matter how many hours of practice I put in, no matter how many classes I take and tutorials I study, I will never be more than a hack. A capable satisfactory hack but a bona fide hack nonetheless.

My bead ends will be smooth and dimpled, my shaping exact, my colors true and yet something will always be missing. I won't have that universal validation that I envy, yet perhaps there isn't even such a thing. It is a figment of my imagination and you know, not everyone likes Picasso. Or Calder. Or Rothko.

Right now I will just say, I'm not going down without a fight.

Excerpt from the poem by John McCrae:

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

Excerpt from America's Answer by R.W. Lillard:

Rest ye in peace, ye Flanders dead
The fight that you so bravely led
We've taken up. And we will keep
True faith with you who lie asleep,
With each a cross to mark his bed,
... In Flanders Fields.

Fear not that ye have died for naught;
The torch ye threw to us we caught,
Ten million hands will hold it high,
And freedom's light shall never die!
We've learned the lesson that ye taught
In Flanders' fields.

And finally:

"So write this number down and know you won’t slip through the cracks.
Look over your shoulder there’s millions of us there to get your backs.
You can play a crucial part, carry justice in your heart, and we’ll be there to get your backs.
Welcome to this land, yes we still have all those marble steps to climb.
But write this number down, because it’s growing all the time."

Dar Williams, Write this Number Down, from In the Time of Gods