Sunday, October 21, 2012

The Last Chapter

I ran into a friend last night during a Cancer Society fundraiser at the High Vista Country Club and inquired about her dad. I knew that she and her husband not long ago had flown from the east coast to Hawaii when Dad fell and broke his 89 year old hip. While Dad was in the hospital they accomplished what he had resisted for too long; they made arrangements for him to relocate from living alone 6000 miles from family to an assisted living facility in Florida half way between two of his three daughters. While his physical health is remarkably good, Dad's mental/emotional stability continue to decline, dragging his quality of life and that of his children down the crapper. "He wouldn't want to live like this; I know if he was in his right mind, he wouldn't want to live like this." My friend's mother (her parents divorced forty years ago) has Alzheimer's disease and lives in a different facility from her dad, 30 minutes the other side of town.

My girlfriend is the only sister who has to travel more than a half hour to help their two parents, and I can say from personal experience that being at arm's length from the aging parent hot spot does not lift one ounce of pressure off her shoulders. She's doing different, but equal, work and carrying just as much stress through busy days and sleepless nights as her siblings. They're tied by family bonds in a tough situation and the demands of the caretaker role in the final chapter of their parents' lives are such that she says, "on any given day, two of us sisters are not on speaking terms with each other and one of our three marriages is on shaky ground."

Another friend, a neighbor down the road, lost her dad this past week at age 93. For at least two years this resilient being was in and out of the hospital, suffering and rebounding from the most intense physical ailments, including sepsis and pneumonia. And yet he clung to life and the medical profession did what they knew to be their job - bringing him back from the edge, over and over again, to a life without quality and with precious little dignity. The costs mounted - financial, emotional, and physical - her mother's health declined and she required hospitalizations during this time, partly due to the stress of adapting to the incremental realization of the impending loss of her spouse. And now he is gone, and Mom is in her final chapter. My loving friend's challenges go on.

In the Jewish tradition, another girlfriend of mine will place the headstone on her father's grave early next month. He died suddenly last year, following the death of his spouse, and under circumstances that left my friend and her sister questioning the competency of the hospital that cared for him and their own trust in those medical professionals. Had they asked the right questions? Made the right decisions? Was there more they could have done? Since Dad's death, they've been dealing with his estate and old emotional family baggage. It's taken a toll on their relationship and my friend's health.

The situation for my brother and me is similar to all of these sad stories. Mom has been in mourning and decline for two years, since our Dad died (though he never believed he would get old or die, nor prepared for either eventuality). My brother is Mom's on-site caretaker in New York and, from home in North Carolina, I handle all the financial, legal, tax, and insurance matters, as well as doing all the research and telephone on-hold duties, in attempts to obtain appropriate resources to support Mom and lighten my brother's responsibilities and to put out fires (reinstate lapsed homeowners' insurance) and clean up messes ("No, Discovercard, the $320 charge Mom incurred for an all expense paid trip for two to Disney and Bermuda was not a legitimate sale, it was a scam.). 

Neither my brother nor I have had children and now we have one - Mom, who is supposed to be the parent and whose self-esteem and independence we don't want to harm, but who we feel obligated to protect from her own vulnerability, bad judgment, and impulsive infantile behavior. On any given day the resentment, stress, and distress in both of our lives is palpable. When you put in all the work to cook, and clean, and tend to the bodily functions of an infant, you are rewarded with smiles, growth, funny antics, and affection. There is no comic relief and no reward in the life of a senior caregiver. The human entity we are caring for looks like Mom, but no longer is Mom. We want to love her; we remember loving her, but this is not her, and that's hard to reconcile. The being that lives in Mom's physical remains grows more and more unhelpable, sad, and hard to love as the weeks and months go on. I want more for her, better, but cannot make that happen. 

In addition to speaking to Mom every day and being her CFO, I spend too much time futilely working on circumstantial "stuff" that makes me feel like I still have a chance of making an impact on her quality of life (researching a chair more suited to her present needs; trying to get more hours of home companion help at an affordable rate; filing an application for the senior bus I doubt she will ever get on). My sleep is interrupted by my mind relentlessly trying to unknot the dilemma of my feelings vs reality and my dreams are filled with symbols of my inner conflict (I am standing in a pool of blood and bodily fluids and afraid that touching them is leaving me open to illness). 

My not being able to stop "trying" to make up for all that's wrong in the New York household results in overwhelming fatigue and does leave me vulnerable to illness - and is totally unfair to my husband, who worries along with me and worries about me to boot. So I must adjust my priorities to include his needs and my own, forgive myself for what I can't control, be satisfied with what I am contributing, and let go. I've begun by reinforcing my practice of meditation and detachment. 

My brother puts a good morning note and the date on a white board for Mom every morning, before leaving for work at 5:30 am, and puts her sorted pills where she can find them and, hopefully, take them at the right intervals during the day. He worries about her safety on some level even while dealing with his full-time job. He fits in shopping for food and household necessities and picking up prescriptions. When he comes home at 5 pm, he has to clean up after Mom's ineffective home companion aide, feed Mom dinner, and then clean up his mother's mess once she's gone to bed. And it's not pretty. If there's an emergency (she's choked, fallen, or can't get the TV to work properly) he gets called. He spends time on weekends entertaining her and uses his personal days to take her to doctors who tell us she's as healthy as can be, except for the "ordinary decline associated with age."

There is no "ordinary" about aging. There is no guidebook; it is not possible to write one. All the situations I've described are the same in general, but oh so incredibly different in their specific challenges. Old age sucks and then you die. What I am all too well-aware of is that being the caregiver for aging parents sucks, and then they die. Dad has already passed, who knows how long Mom will go on and what we'll have to face between now and then. Medical science works their magic to maintain our lives long after the quality of life of the patient and their closest relatives has bottomed out. So I'm left to wonder, as I sit digitally unraveling my thoughts to vent them silently, rather than inflict them on my ever-loyal husband, caught in the family drama, when Mom goes, will we all still be "family"? Will we be joyous for her release from her corporeal trap? Will we be young and healthy enough ourselves to fill the time once dedicated to her well-being with new adventures and good times? Will we remember the Mom who made us and set in motion the love that keeps us by her side as we all write this difficult final chapter? I want to believe we will. Like the seniors we care for, we just have to get up every day and keep going.  

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