Battle over, sweet release at last
The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.
— W.H. Auden
My partner, lover, best friend, true love of my life has succumbed to the dementia with Lewy bodies that has for the past four years drained her of every asset save the shell of a body that remained when her mind was completely gone.
Over the past six months, she showed marked deterioration in her condition. She developed Parkinson-like symptoms, which included shaking hands and an unsteady gait. Her loss of motor skills was second only to her loss of cognitive skills; since about Christmas, communication for her became nearly impossible and communication with her was virtually out of the question.
She became combative, making every change of clothes a skirmish and every shower a pitched battle. One day she suddenly stopped taking her badly needed medication, forcing us to find creative ways to administer pills that were meant to be simply swallowed.
And at the end, she virtually stopped eating. She wouldn’t feed herself and only accepted miniscule portions when she allowed us to feed her, which was becoming more infrequent.
Many dementia patients die when they refuse all food, although this can be a sad and lingering demise.
For Pam, however, the end came as the result of seizures that started in early March and caused several falls. The doctors prescribed an anti-seizure medication that we administered; it helped but was not effective in ending the episodes.
She recently had a seizure and tumbled down our stairs, landing on her head on a hardwood floor; we airlifted her to Syracuse. But bleeding in the brain was prolific, and we were offered the Hobson’s choice of a difficult and risky operation — that included removal of a portion of her skull and a protracted and uncertain recovery — or placing her in a hospice bed and letting her pass peacefully in a coma.
We chose the latter.
At some point, every family with a relative suffering with any form of dementia will face this choice. For her kids and me, the decision was difficult to contemplate but easy to choose: None of us wanted to take heroic measures to return her to a world of fear, confusion and darkness, a world where she finally emerged from a recovery that held no future hope for a return to the Pam that she wished to be.
So after five days in the wonderful Hospice of Jefferson County facility, in late afternoon with birds singing outside the window and the promise of spring warmth realized, her breathing gradually slowed until it reached its final breath, as I sat with her and held her hand.
With most fatal diseases, patients can retain their mental faculties to the end. For dementia patients, however, the awareness of family and friends’ concern and love is not there for comfort. The victims of this ultimately cruel and vicious disease die alone, even though they are surrounded by the people who most love them.
In Pam’s final months, as she battled the loss of cognition, she expressed constant fear. And burning anger, anger that she felt for her inability to understand, to speak rationally, to care for her own essential needs. She was in a prison with a life sentence, no possibility for parole and death the only clemency.
Thus it is with all dementia patients. The thief in the night that steals the brain’s functions robs them of their most precious possession — the ability to understand their world and to express their feelings about it.
It doesn’t matter whether it is Alzheimer’s disease or the particularly pernicious form of dementia that afflicted Pam. There are no cures; there are only hoped-for temporary reductions in the manner in which the disease progresses.
Dementia is horrible in every case. But there is a very special hell reserved for the people with early-onset dementia.
Pam was diagnosed at the age of 52. We had only just started to make our plans for retirement, plans that leaned toward a warm climate and a gentle voyage to the end of our days.
Yet at 56, she is dead. That is unfair for anyone, but particularly cruel for a smart, loving, funny wife and mom. A graduate of Georgetown University, Pam reviewed restaurants for the Times, wrote two how-to books, conducted online seminars for nascent writers.
She loved to read and loved to write even more. Her ability to do these things, the abilities that were torn from her at such an early age, were the core of her existence. And without them, she was lost.
And that is the terrible toll that is taken on loved ones and caregivers. Watching your partner deteriorate to the point that she or he doesn’t recognize you, a point that resembles a 1-year-old in terms of need, is truly hell on Earth.
Pam’s fear and suffering is done, her battle lost, her body reduced to the essence of ashes. Her soul is free, her spirit once again soars in the heavens.
Yet as I write this, tears pour down my cheeks as my sorrow and great, burdensome awareness of loss washes over me.
“Why Pam?” I scream at God. “She was one of your most faithful servants!”
God has not yet responded, and I’m not waiting for a coming reply.
If you have friends who have a dementia patient in their family, know this: Their life is not like yours and will never be again. There will be no good resolution, short of a quick and painless death, and the pain may linger for years.
And those with early-onset dementia will have the most difficult path of all. For there may be many, many years that they must cope with the effects of this condition.
I am not sure that I would have survived this whole period of caregiving without the unwavering support of my stepchildren, friends and the family of the Times. I will be eternally grateful to them for giving me the courage to go on.
Remember this if your circle is touched by dementia. Your friends and extended family need your help, your care, your love.
Even when — perhaps especially when — their loved one finally achieves the sweet release from this mortal Earth, their suffering is not yet over. Your support may be what sees them through, as the support I have received has carried me past the chasm.
Perry White is managing editor of the Watertown Daily Times. He can be reached at firstname.lastname@example.org.