No Mourning, No Pieta, No Tears: Waiting for the Final Death

Saturday, June 7, 2014 - 4:00pm

No Mourning, No Pieta, No Tears: Waiting for the Final Death

“There’s something wrong with Mother,” I said to my two brothers and my sister. “It’s Alzheimer’s or dementia. She is out of her mind.”

“She just doesn’t talk much any more.”

“She never did answer a question directly.”

“She’s OK. She’s not harming anyone or setting fire to the house.”

These were the answers my two brothers and my sister gave me when I would bring up the topic of dementia or Alzheimer’s disease. No one wanted to think that a family member could be, well, out of her mind.

But she was. I knew for years she had some form of dementia, but no one would believe me. She accused my father of replacing her dishwasher with one he found in the dump one time. And then she phoned me to give the serial number from the dishwasher and find out when it was made so she could confront him with replacing what she thought was her new dishwasher with an old, discarded one.

I lost it during that phone call. I told her she was crazy and hung up on her. I didn’t speak to her for months after that. I was angry that my mother had left and in her place was this woman who talked nonsense and would not be deterred. She wore the same clothes day in and day out — a cotton housecoat over long underwear, grey work socks, and running shoes. She wore them during the day and slept in them at night. Once a week she asked for a bath, and my father would lift her in and out of the tub. He was 90 years old. She was 86.

At that point, one of my brothers spoke to her family doctor and had her assessed. The doctor was able to admit her to Sudbury General Hospital “for tests.” From there, she was moved into a nursing home where she would die seven years later.

An elderly Iranian Jewish woman walks in a room designated for Alzheimer patients at a home for the elderly in Tehran.

(Behrouz Mehri / AFP/Getty Images.)

The hospital was the first of her three deaths.

When I visited her there, I saw a slack-jawed woman who stared vacantly ahead and had few words left to her. I am not certain she knew who I was when I was alone with her. I asked if she wanted me to put on the TV so she could watch the news, which was something she used to enjoy. She shook her head and said she could not do that.

“I can’t do anything. I just can’t,” she said, “That’s all I can do.” I sat beside her bed and saw a stranger and realized I had fallen asleep. While I was asleep, something had happened. The woman I knew who cooked three meals a day, who sewed all my clothes as a young girl and then taught me to sew, who polished hardwood floors on her hands and knees, who served as sacristan at our church — ironing fair linen and polishing chalices — who still put clothes out to dry on a clothesline and ironed sheets, who preserved vegetables from the garden — that woman was gone. In her place was another who had vacant eyes and hands that fell uselessly by her side and were empty of all occupation and all strength and all purpose. The woman I knew as my mother was gone.

A retired resident suffering from Alzeimer's disease passes time alone in a hallway at the Jia De Apartments for the elderly on the outskirts of Beijing.

(Frederic J. Brown / AFP/Getty Images).)

When I look back on this moment, I see her hands open with the relief of having no more work to do, no more need to meet the expectations of others, no more obligations. The burden of her life was lifted and, in the confusion of her mind, she was right. There was nothing for her to do any more. Her sword had outworn its sheath and her soul had outworn itself. It was as though she had fallen into clear, deep water and was moving away from me — falling, falling, sinking out of reach. And I watched her sink deeper, knowing she was beyond reach.

The next death came when my brothers convinced my father to sell the family home and move into a seniors residence. My brothers left it to me to clean out her things from the house, and I did. Everything went to one of three places: to charity shops, to my father’s apartment, and to the dump. One dress, one pair of shoes, and some jewelry I saved to dress her for her coffin.

What remained was the emptiness, the echoing of absence and silence. I looked at her empty closet and it was like the empty tomb at Easter. She was not here. But if she was no longer here, then where?

A woman, suffering from Alzheimer's disease, walks in a corridor in a retirement house in eastern France.

(Sebastien Bozon / AFP/Getty Images.)

When I visited her in the nursing home, there was nothing there. Nothing left. She reminded me of a long-dead June bug I found in my basement. The carapace was there, but nothing inside. No conversation. No recognition. No response of any kind. With dementia, there are no good-byes or last visits. It’s a gradual and steady attenuation, dissolving and finally a fading to that final silence.

She had moved beyond reach. Now she moved beyond voice and speech and sound. And we waited for the final silence. And we waited for the final death.

I was working late that day and my brother, Jim, called me at work to tell me she had died. “Thank God,” I said. “It’s over.” He quietly agreed with me. All I felt at her passing was relief — not love or grief or pain at her departure from this life but relief that the waiting was finished and that final silence had come.

I told him where the coffin outfit was. At her funeral, I read Proverbs 31: 10-31 – “Ode to a Capable Wife.” I owed that much to the mother who left to have her remembered as capable and with a price above rubies and not as that empty carapace.

A woman, suffering from Alzheimer's desease, holds the hand of a relative in a retirement house in eastern France.

(Sebastien Bozon / AFP/Getty Images.)

In two of the synoptic gospels, Jesus goes with his disciples to a place called Gethsemane and tells them to sit and stay awake while he withdraws a bit from them to pray. As we all know, the disciples fall asleep and are subsequently rebuked by a disappointed Jesus for doing so. But the rebuke does not forestall or change the outcome of the inevitable. As an adult child — the youngest in the family and one of two daughters who had little to do with her ongoing care — my role was to wait with her and watch. Somewhere in that period that was her Gethsemane, I confess that I fell asleep. I could not do the vigil.

There was no mourning, no pieta, no tears. Just relief. It was simply the end of the story when love cannot breach the chasm, when all that is left is the waiting for what must come. My mother’s Gethsemane was a long one and I am now convinced that we all must face our own Gesthemanes — when we are truly alone and walk that last path beyond the reach of others who can only wait. Those who wait, wait not for a return but for the inevitable and for the relief that comes with it.


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Gloria Jean Bubba

is a teacher from Ontario, Canada.

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Gloria - Thank you. Thank you Krista for including this beautiful story. I, too, am the designated 'waiter' - the one who is sitting with my parents as they fade, in and out of the world, in and out of connection, in and out of life. This article moved me very deeply.

I do not believe that the soul dies with the destruction of the physical.brain by Alzheimer's disease. My father died of Alzheimer's. He too did not know anyone he previously knew. He died in a nursing home after 7 1/2 months there. I think the soul stays until the body is dead, and then it passes on to what is next. I feel that his soul felt my loving care and that of the nursing home caregivers, very single day, though there was no physical indication of that recognition. I learned that the person I would have liked to see, the ego, may have disintegrated with the destruction of the physical brain. The essence of my father, indeed any dementia patient, lives on. I think a challenge of Alz. or other progressive brain illnesse is to examine one's spiritual beliefs, especially the immortality of the soul.

When is it death? What does " brain dead" mean? Is our loved one really "there"?

For the better part of two decades I remained deeply angry with my mother for some of the choices she made...
since my mothers passing....
I now parent my Father,
only those who have walked their path can understand.
I hope I am kind enough to my children that they will select a good care facility when my time comes.
Where my Father and I's journey will take us I cannot see now. I can only take one step into the darkness and hope wife and children will follow.
I have know for decades that my children need to see me honor my parents.

I need to honor my children, they are my legacy.

"And the cat's in the cradle and the silver spoon

Little boy blue and the man on the moon"

"And as I hung up the phone it occurred to me

He'd grown up just like me

My boy was just like me"

(Harry Chapin)

Hi, Gloria:
Thank you for your heartfelt and eloquent essay. My mother also died of Alzheimer's Disease, suffering for 15 years. I lived with her for 10. Like your mother, mine also was a "busy bee" mother: cooking cleaning, ironing, sewing and gardening. She did SO much for others. I loved the image of your mother's hands finally resting in her lap. I moved in with my mother in 1999, leaving my job, my career, friends and home in Florida. Back in Virginia in the house where I grew up, I became my mother's mother, doing for her what she had done all those years: cooking, cleaning, ironing, etc. When I could not speak, she cared for me; when I could not walk she lifted me, as I now did for her. And I did this for 10 years. I loved her so much so that I could not let her go to a nursing home. The last 5 years she was silent mostly, but something deep and spiritual and true happened between us, a true soul connection--a knowing that took us beyond Alzheimer's, beyond this earth it seemed, the connection of eternity. I've had a lot of difficulty getting back to my life, but I am so grateful for those years I spent with her. It changed me, it made me see what was truly important in life, not so much egocentered or material goals, but solace in the heart. I now teach yoga and meditation in Northern Va. Oddly, my "sixth sense," my intuition grew much stronger with her passing. I believe she is still with me.

I had such an overwhelming sense of loss after I read this article that I had to quiet my mind and remember what Life truly is. I retrieved this article from the Christian Science Journal to share with you:

I preface my views by sharing that I am dealing with many of the same events. My father was living in a Memory Care facility. This past November, at 97 years old, he needed one on one care, 24 hours a day, and could not abide being alone. The expense of 24/7 care, added to the charges of the facility, plus the depressing atmosphere in the more severe dementia/Alzheimer’s unit made my decision to bring him back to his own home and I moved in with him. I am chief caregiver along with a caregiver with him at all times. He is under a doctor and nurse’s care through a Hospice program. My father feels loved and cared for as he is slowly makes the transition into a different reality.

As the weeks go by my father is drifting further away from the world as we know it. However, I see him everyday and he feels the security of our loving care. Of course there are moments when I pity him and his condition, when I hope that he will soon pass on peacefully in his sleep and leave his condition. I find myself in that strange place of hoping he passes on and at the same time, working with his caregivers, doctor, and nurse to provide him with the best care.

What sustains me in this experience is my constant prayer—that no matter what appears on the surface—my father can never be separated from the love and goodness that is God. I also pray to understand that my responsibility is to care and love my father and to continually see him as a perfect reflection of Divine Love. This understanding has brought peace and harmony into our home amidst all the trials.

I too had a long and ardous journey with my Mom. Eight years of care. While we had her in a nursing home, we were involved with her care. I felt it important to be there with due diligance. Partly because I did not trust the institution or any for that matter and partly because I needed, wanted to be there. Some of my siblings were with me while others could not deal with who she had become. Certainly not our Mother, who funny and sweet became mean and cranky and let us all know it. However, compared to others in her facility she was a dream. The nightmare was that we couldn't truly care for her unless we gave up our own lives, families, home. So part time and with some travel involved , I signed on. I did have to learn about this great change.I changed to become this women's friend. To hold her hand, to calm her down, to feed her whatever she wanted. To answer her repititive questions. And here is the difference between my Mom and many other alzheimers patients. She was still verbal. This could be due to the fact that language was paramount to her. At the end, a few weeks before her death she began to speak only in rhyme. When I tell this to others it sounds like it was just part of my imagination. But I wrote it down. She mixed song lyrics(her forte) with words that rhymed. She made no sense or at least sense as we may know it. To me, she was lyrical, lively, childlike, full of wonder and my new friend. I was amazed. Part of her brain was working. The childhood seemed to be all that was left of her and she was letting that go. " My Mother and Father are here...let's go and have us a beer." And more, so much more. I could go on and on as I have eight years to pull from. But through all the pain and suffering of watching her go, I found joy. I watched her soul move away but to the end she shared part of it with me, more importantly I embraced it.

Bravo on finding joy and (although you do not use the word) peace. Peace with a parent as they are dying is SO important! My grandfather's last words were 'Beautiful babies!' as he watched my niece and nephew play near his bed. He died of Alzheimers at home with his family near him and no one regretted the time and work that went into it. My grandmother as well died at home of dementia, but she was still putting together puzzles and shelling peas a week before her death. There is so much to be said for taking care of the ones we love, the ones who took care of us. We learn how to be generous, giving, kind, compassionate, and forgiving. We learn what is truly important in life. We learn so much. I feel sad for the people who don't get to take care of a loved one as they die. They are missing so much.

This is all too familiar for us at present as we have helped move my mother-in-law into a memory care facility. It is lovely and the care is very attentive. My MIL is able to eat very well again after she'd fallen into a pattern of ice cream, yogurt and oatmeal even though I would take her food daily, she hadn't daily bathed or showered for some time for fear of falling in the tub although she was too proud to say, I knew. When she became confused of where she was and began to call in tears, we knew she needed 24-hour care. Independence, pride and a keen ability to almost 'keep up appearances' delayed our earlier intervention. As much as there is some sort of guilt with moving her to a health center, she had begun to wander in the house at night and make phone calls at odd times not realizing that we were asleep for the night. As her mind is more able to relax without the innate worries of living alone and being aware to a degree that you know you're not in control of your world, she is beginning to show signs of more peacefulness. My lesson learned is that no matter how determined parents are that they will remain at home until they die, that it's important to bring it up anyway and not tip toe around what might become reality. My admiration is genuine for those able to care for parents in their home regardless until death, but we simply were unable and medically and emotionally ill-equipped to manage the day-to-day roller coaster that is dementia.

Lost my beautiful mom to this mind-robber. And yes, when the end came, after 6 long years, RELIEF. Comfort in knowing I wasn't the only one to feel these feelings shared in this article. Thank you.

Where was the love?

Thank you for this beautiful piece of writing. I am so grateful for your ability to reflect and to honour the years leading up to your mother's death in this way. For me, there's such sacredness is giving voice, so lovingly and articulately to the full range of human experience. I feel as if here, you've restored an aspect of life to me that was missing until now.

So grateful for your words, Gloria. They brought me to the nursing home where my father is now, thousands of miles from where I type this reflection, Alzheimer's has taken him there.It was a relief, then, to know he would not be on an endless walkabout alone. My mum is living in another nursing home, yet she is waiting for her release. She has 'ups and downs', 'highs and lows', 'mania and depression', yet knows the home is not her place, and longs to be free. We, like you, are two brothers and two sisters who have given to surrender. Two of us living in Australia, two of us in the UK. The guilt and the arguments, have subsided but the pain of knowing that life has been difficult for our parents as they have struggled in their lives, together and alone, is ever-present. Waiting, one parent conscious and the other not of the walls that house their freedom. They've taught us much and remain my inspiration. All my very best wishes to you. Susanna

Wow! I had trouble reading this essay. To be honest, I was appalled at times at the language used--cold, detached, seeing nothing but an empty shell, unable to reconnect. So very sad.
My dear husband has Alzheimer, and I have the privilege to care for him. It is an honor to walk this journey with him, hand in hand.
After the diagnosis I knew that living in our isolated cabin in the woods was no longer an option, and I had to plan for our future. We moved our belongings into a mobile home, replaced the carpeting with linoleum throughout for easy care, furnished it sparingly to avoid clutter, installed grab bars in the bathrooms. The covered deck was refinished with a skidfree floor, the perfect place for him to sit and smoke his pipe and watch the hummingbirds at the feeders. His favorite music--oldies--is playing softly in the background. He likes his daily routine, so we try to avoid interruptions as much as possible. A few friends drop by here and there, and that is sufficient distraction in our everyday lives.
Our world is now quiet, little or no stress, taking each day as it comes. We learn to live in the here and now. The past has faded away, the future is uncertain. But we have today. I bring fresh flowers in the house every day, massage his feet when he gets anxious, whisper words of courage and love in his ear. When we pass each other, we smile and hug, and I always wait for him the break the embrace. When we sit on the sofa together, we hold hands, cherish the time together. We talk about whatever he wants to talk about.
I am given the gift of time now. I use this gift to draw close to God. Time for prayer and meditation, time to make sure all is well with my soul. I love my husband, even now. Our love has changed over the years. It is of the agape type now. I love to provide a safe place for him, my beloved. I love to hold him when he weeps, comfort him, reassure him.
I know, that as this disease progresses, that he will never be an empty shell. The core of him, his soul, his spirit, will not change, but will grow and expand in a beautiful way. And I will be there to stand witness to the transformation.
Michael Fox said, "For everything that is lost, something will be given in return." And so it is. My husband is not the only one who is changing--so am I. I am more patient now, a better person in many respects. My focus has changed to what really matters in life.
There is a sacredness now in our lives. We are both standing on sacred ground.