A few years ago, doctors told the writer her sick mother wouldn’t survive the night—they were wrong. She’s prepared for her funeral, but how can you prepare for what comes after?
We urgently need your help. DAME reports the stories that need to be told, from perspectives that aren’t heard enough. In times of crisis it is even more critical that these voices are not overlooked, but COVID-19 has impacted our ability to keep publishing. Please support our mission by joining today to help us keep reporting.
Even though my mother is still alive, for much of the past two weeks I’ve been planning her funeral. I should have planned it when she literally fell deathly ill two and a half years ago and the doctors told us she wouldn’t make the night.
But I didn’t. She made that night and several others. And on New Year’s Eve, I found an emergency nursing home because after a week the hospital pronounced her well. She left the hospital unable to walk, speak, or feed herself, all things she had been perfectly capable of doing the day before she went into the hospital with a diagnosis of pneumonia and flu. She was black and blue from her fingertips to her shoulders as she had been strapped down after she took off running down the hall soon after her arrival. That was the last time she took a step.
I should have planned her funeral as soon as she was resettled, in a better nursing home, her fifth and final move in a dozen years: from her house to assisted living to the memory unit to another room in the memory unit to one nursing home and then another.
I should have planned it ten years ago, or six or even four, as her condition continued to deteriorate.
But I didn’t.
Then suddenly things changed. Not with my mother so much: She remains in her static state: sitting in her wheelchair, fed by hand (a long, hard challenge with the nursing home), fighting each week’s bath, and not only unrecognizable to us, her children, her sister, but unable to name any of us, either, either. Sometimes, after a very long visit—I live 600 miles away and visit her four or five times a year for a week at a time—I think I see a moment of recognition on the last hour of the last day of my visit. Six months ago, when I left her and said, “I love you,” she said, “I love you, too.” But for an Alzheimer’s Disease patient, six months is as six years or six minutes.
No, things changed when my uncle, her brother-in-law who served as her power of attorney, died suddenly and my youngest sister and I were thrust into the complex world of legal guardianship and forced to deal with all her financial papers and requests which had been languishing in file drawers for more than a decade. We also had to deal with our own denial. We were now responsible for her.
My sister, who lives closer to our mother, dealt with the court issues although we sent myriad papers back and forth, notarized and signed, in order to take over both her welfare and her financials. We were at the nursing home when a guardian ad litem asked her if she was okay with us taking over. She did not, of course, speak. And then I was taxed with her final arrangements. I had a partial, if incoherent, obituary she had penned and amended years ago, a legal document stating that she wished to donate organs, and the knowledge from my aunt that she had a memorial chapel picked out and a plot paid for.
This all somewhat shameful as according to Jewish law the dead must be buried within 24 hours and with a woman in my mother’s condition that could mean a day from now, a week from now, a month or a year.
But it is not without background. My mother had been an alcoholic for more than 50 years, a self-medicated manic-depressive, prone to bouts of mania or weeks in a dark bedroom, depending on the month. She had a nervous breakdown at 51 and had been brought back north by her sister for care. It was to that same hospital that she was brought to dry out, finally, after years of her insisting she was fine. She was fine, in some ways, a high-functioning alcoholic, brainy, accomplished. She was just a lousy mother and for years we had all distanced ourselves from her as best we could. Thus, we did not see that the years of forgetfulness and erratic behavior was not alcohol-fueled but the same disease that had killed her own mother. But more brutal. Thus, we were more stunned than she when the doctors found she had severe brain function loss. Alzheimer’s. No amount of stopping drinking would arrest the diagnosis, although it might have slowed it had she not started drinking again.
But she had been hiding her illness from us for years, in denial herself. And we all were glad to cooperate in that denial. Until we couldn’t. Yet it was already too late to ask her how and where she wanted to live or die: She gave up and let us find her a small apartment where she could receive care and which had a unit for when she got worse. She didn’t fight the sale of her house—not much—and she didn’t want to talk about her illness. Any talk of death or dying or burial was off the table.
I chose an elegant yet simple wooden coffin, meant to decompose with the body of the dead which, by Jewish law, is not embalmed. I wrote her obituary. I answered questions about the where and when and how of the day. I said no to a car to take us to the gravesite, I said yes to the Taharah, the ritual washing of the body by the Chevra Kaddisha , the women responsible for doing so. I said yes of course to wrapping it in linen clothes, and I said yes to the sprinkling of soil and water from the State of Israel over her body, for those who cannot be buried in the Holy Land. I don’t know why I agreed to that except that when the man at the memorial home asked me, I burst into tears at the thought of it and so it seemed a sign that it was the right thing to say “yes.” I feel sure she would have wanted it. I don’t know how because she never told me. But I do.
I chose a rabbi. I made many other decisions. I have made a list of her remaining friends to contact. I arranged for the donation of her brain to the medical school of the college she attended. I suggested this to my sisters some time ago when I realized that she was something of miracle, a woman who had had the disease for a good 15 years, whose body had weathered sickness that would have killed most people, whose heart and lungs and other organs were way healthier than most 88-year-olds. When I found the paper which she had signed as an organ donor I thought: I can make this decision for you. It is the only organ that science needs. It may help. It may help us, your children, your grandchildren, a million others who fall prey to this disease.
The brain must be harvested within 18 hours, the body must be buried within 24. Her children and grandchildren live far away. So now I have discharged my duty to her: When she goes, everything will be ready.
The lesson in all of this is that I am both prepared to lose my mind and I am prepared to die. My husband and children know what to do with me. I have told them and it is written down. There will be no guessing, if there may still be weeping.
There is one thing left to do. Although I have written about my mother a half-dozen times and woven her story into an as yet unpublished novel, I must still pen her eulogy. I feel much urgency now that the rest of the planning is done, but a good part of me feels that—even though she had been lost to me for years before her mind went—when I do write those final words, when I finish saying all I can about her, she will be well and truly gone.
We urgently need your help!
Covid-19 has dramatically impacted our ability to keep publishing. DAME is 100% reader funded and without additional support, we can’t keep publishing. Become a member at DAME today to help us continue reporting and shining a light on the stories that need to be told, from perspectives that aren’t heard enough. Every dollar we receive from readers goes directly into funding our journalism. Please become a member today!
(If you liked this article and just want to make a one-time donation, you can do that here)
CONFUSED ABOUT VOTING?
We've got you covered!
Check out our state-by-state map for registration deadlines, early voting dates, and everything else you need to make your voice is heard on November 3rd 2020.