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

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