What Grief Feels Like

For years, I harbored the great conceit that I knew all there was to know about grief.

I have an early memory. It was summertime in a bungalow colony in the Catskills. The room I recall is not familiar. My mother stands in front of a mirror, stripped to the waist, feeling a lump in her breast. I think another woman was there and my mother was showing her, but I cannot be sure. I think I asked if I could feel it and she bent over and let me touch her. 

There's another memory, though the details are probably warped by time.  It was on the day Bonnie and I entered kindergarten for the first time.  I am convinced that is the day my mother entered the hospital to have her breasts removed, though I cannot be sure.

These two events are forever combined in my memory. Even if these occurred weeks or months apart, I remember them happening simultaneously.

Sometime in the autumn of 1954, my mother entered the hospital for the last time. My father visited her but we never did. Children were not allowed. Then one day my sisters and I were told we were going to see mommy. I think Sharon was allowed upstairs because she was 11, but Bonnie and I, just 8, were parked in the lobby for what seemed like hours. Someone, I forget now who, came down to the lobby and told us to go stand on the sidewalk.

We did as told and looked up at a particular window. A figure that I barely saw, waved at us. “Wave back at mommy,” someone said. That was the last time I saw my mother alive.  

My father died at home while watching a “Pete and Gladys” sitcom. It was a Monday night in January. I remember the day of the week because he and I had been arguing all weekend. I don't remember why, but I do know that it was Bonnie that insisted I make up with him. He was seated before the TV in the living room and I told my father I loved him and I was sorry. I returned to our bedroom and the next thing we heard was a thump. He had fallen out of his chair dead. Sharon was about three weeks shy of her 18th birthday and Bonnie and I were 15.

I became quite smug about death after that. For decades after, whenever someone died, I might feel sad, might even miss them, but I took it in my stride. I was, I thought, immune to deep sorrow.

And then my sister died.

Years of my defenses were obliterated. This sorrow is not something I can endure in my stride.

I know she would expect me to mourn her; if only because we often joked about it. But I also know, almost hear her voice in fact, that it is time to stop crying. I hear her telling me that she's quite fine and hates seeing me so miserable.

And Then There Was Nothing

After weeks of watching and waiting, at the beginning of October, 2010, the process of Sharon's dying began in earnest.

Neither Bonnie nor I had slept much more than a couple of hours a night since the previous May because Sharon had been in and out of hospitals and emergency rooms with all kinds of horrible complications every few weeks. Each time she was admitted, we made sure one or both of us was with her every single day, all day. It was exhausting.

Sharon's final hospitalizations were particularly gruesome. At times, she became quite agitated, disoriented and confused. One day, after spending 9 hours at her bedside, I came home and fell into a deep sleep. I wakened to the phone ringing. It was Sharon calling and she was frantic. "I'm falling off the bed.  I keep ringing for someone to come and help me.  No one comes.  What should I do?" she sounded so frightened.  I told her to hang on to the railing as tight as she could and I would be right there.  I knew she wasn't falling off the bed; but she was so upset.  She was "sundowning" and I knew she needed to see something familiar -- me.

I got in my car and rushed back to the hospital to find my sister covered in blood. It was like a murder scene. Blood covered every surface, everywhere I looked:  the windows, the bed, her nightstand, the telephone, her hair, the walls.  In her panic, she pulled out a blood transfusion and because no one had bothered to answer her buzzer, were it not for my arrival, she would have waited until the change of shift before anyone checked in on her.

As soon as Sharon saw me, she visibly relaxed, but she was still disoriented. I reassured her that she was not going to fall off the bed and that I was going to get help.   

I stormed out looking for a nurse. I was taking no prisoners. "Who is responsible for Sharon?" I bellowed.  "She's my patient," replied a young nurse no more than 25 years old.  "My sister is covered in blood,"   I demanded to know why she did not answer the call buzzer to my sister's room.  The young woman looked so guilt-stricken, I almost felt sorry for her.  Obviously overwhelmed by a responsibility for which she was neither prepared nor capable of handling alone, she probably judged it a waste of her energy to answer the call of someone who was sundowning when she had so many other things to do.


Following me back into Sharon's room, she washed the blood as best as she could, chatted calmly with Sharon and called a technician to redo the IV. No longer distressed, and actually quite talkative, Sharon behaved  as if she and the IV technician were at a cocktail party. "You are so pretty," my sister told the technician.  "You've been so nice, I hope we  meet again under better circumstances," she said smiling.  The absurdity of this made me laugh.  I stayed with my sister a while longer and went home.  Next morning, Sharon had no memory of any of it.  

Because Bonnie's house was closer to the nursing home, once the dying process commenced in earnest, I slept there, not that either Bonnie or I slept much. I cried a lot. Bonnie did too, I think. Sometimes we cried together. My brother-in-law, Bonnie's husband Chris, kept us all going.  

Bonnie and I spent our days and part of our nights by Sharon's bedside at the nursing home.  As Sharon gradually stopped talking, we'd just hold her hand, or whisper I love you, hour after hour. People came to say goodbye or to offer comfort.  

For the first time in all the years of Sharon's tribulations, she began having serious pain.  She would sleep for a while and then wake and when she could speak only one word at a time, she often woke saying "pain." They began morphine. The relief lasted shorter and shorter periods so they began dosing her every few hours.  We were told that the end was very near.

That last day just dragged.  

After a certain point, everyone who had come to sit with us, left.  There was just me, Chris, and Bonnie alone with Sharon. Her breathing, which had been very loud and labored, became very still. And then it stopped. She was gone.

The tension between Bonnie and me which had been simmering for months, just erupted.  We stood there bickering over the exact last breath.  

We kissed our sister and sat with her for a while in case her soul was still hovering somewhere; and then it was time to leave. We took her jewelry, removed her necklaces and her rings. I grabbed a few momentos and stuffed them in my pocket; a basket I made her, a few photos, and we left.

She had lived at the nursing home for six years and had accumulated a lot of things, too many to have carried with us that night.  Sharon had a brand-new computer and printer, an expensive telephone, a tiny microwave, a refrigerator; lots of clothing, a tiny chest from her apartment,  family photographs and paintings. There was also a mirror that used to hang in the foyer of our childhood home.

The morning after she died, I got an email from the nursing home asking whether we wanted to pack her things or should they? We asked them to do it and we'd collect her stuff later.  We asked them to please be extra careful with that mirror because it had great sentimental value to all of us.

The next couple of weeks were a fog. I stayed at Bonnie's. People came. No time to think much except at bedtime. Sharon did not want a funeral.  She said if people didn't come to see her when she was alive, what's the point of doing so after she died. She was cremated and requested  a special place for her ashes to be placed, which Bonnie, Chris and I did one Saturday. There was a lot of activity and with it a sort of relief. Bonnie and I were able to sleep for the first time in months. Our bickering stopped too.

After I returned home, Bonnie and I arranged to go through the boxes of Sharon's things that the home had packed.

There's no easy way to say this.

When Bonnie and Chris went to the nursing home to collect the boxes, just about everything of value was missing, including the mirror.  The only things left were the family photographs, Sharon's paintings and things like her address book.

Bonnie had always made it a point to be much more involved and friendly with the staff at the nursing home than I. It was more important for me to maintain a professional distance. Bonnie and Chris, on the other hand, had each year made generous financial contributions amounting to thousands of dollars, and Bonnie volunteered there one day a week.

Bonnie was now determined to find out where the missing items were.  I wanted to call the police. Discretion is the better part of valor. I let her handle it. She thought of these people as her friends.

The nursing home officials took no responsibility. What they did do is look for someone to blame. Instead of blaming the people actually responsible, they saw fit to blame the people least able to defend themselves. It was a nasty business indeed.

In the end, the refrigerator and yes, the mirror were recovered. Everything else was gone.

It's not the things that mattered so much. We were going to give away most of it anyway. It's the lack of respect for Sharon expressed in the utter disregard of her caretakers. Despite losing so much control over her daily life, and the many indignities she endured as a result of her disease, Sharon was the embodiment of grace.  She went out of her way to show kindness to the very people who thought nothing of picking over her posessions like so many vultures.  

That the nursing home officials went out of their way to place blame, not on the culprits, but on the people least able to defend themselves, made our grieving process even more terrible.  Sharon would have been incensed.

Sharon deserved better.

I still have nightmares about it all but they're happening less often.  I dream about my sister and when I wake and realize she's gone, the ache for her returns.  I don't know if there's life after death.  I sometimes think I feel her around me, talking to me, but I cannot be sure.  That signal we three sisters devised to let the other ones know if there were life after death has already occurred but then I'm not certain it's just a coincidence, because it was so subtle.  Bonnie needs no convincing.  She is certain already. I hope she's right.

My Sister Died

My sister Sharon (Sheshy) died at 6:45 pm on October 14, 2010.  

I could tell you about the gruesome months that preceeded her passing, or the horror of watching someone I loved so deeply, die by inches, but that would not really matter.

We three sisters were a unit. We survived the death of our mother when we were in elementary school and the slow death and illness of our father when we were teenagers. Early sorrows bonded us in ways that few people can ever understand.  

When life separated us, sometimes by hundreds or thousands of miles, we never lost touch for more than 24-hours. We spoke at least twice, but often three or four times a day, especially in the last decade. There was always something to say to each other. And in the midst of some of the worst sorrows of failed relationships, lost jobs, divorces, disappointments, we always found something funny to laugh about. We argued sometimes, violently so. We disagreed often. We were each so different from the other. No matter our differences, we always, always loved each other and made sure the other knew so.

Sharon's last years were spent in a nursing home. She had multiple sclerosis.

When her first symptoms appeared in 1984, she and I were living in Washington, D.C., our sister Bonnie was in New Jersey. After a few scary weeks and months, the symptoms disappeared and for the next few years, Sharon seemed fine. She left D.C. and moved to New Jersey to join Bonnie, but by 1987, the MS came back. I too had moved to New Jersey by then.  Sharon stopped working.  Eventually, I bought an apartment in her building. She was becoming more disabled with each passing month, but she and I were both in denial. It was easier to cope, especially for me.

Then after September 11th, it seemed I was calling 911 for ambulances and spending hours in the emergency room with Sharon every few weeks for one thing or another.  

I was the last one to accept the fact that she could no longer manage on her own.  I was still working. Bonnie and I fought bitterly. I kept hoping there was a solution. Bonnie faced reality. Neither Sharon or I could.  

When Sharon entered the nursing home, age 61, amidst 70-, 80- and 90- year olds, I sank into a deeper depression than Sharon did herself. She kept alive a delusion that she would recover and come home again. I no longer could pretend.  

Yet, over the next years our unit achieved a new kind of normalcy.  Sharon began to make friends.  We three were still able to find things to laugh about.  Except for the setting, things among us were much as they had always been. One or both of us would be at the nursing home six days a week, certainly after I retired.  Bonnie became a volunteer there.  There were long months of relative quiet. 

Saturday was always Sharon's and my day together watching television or doing crosswords, or just talking.  When it was just the two of us alone, I'd often turn to her and say tearfully, “I ache for you.” She'd agree, “I know, and I ache for you too,” and then we'd reminisce about a vacation we took, or a meal we ate, or a book we read, "Remember the time...".  

Typically, I would bring a CD of  Bill Maher's program or a movie and we'd sit arm-in-arm, holding hands, eating junk food, and watch it on her computer. She invariably fell asleep in the middle of the program, she said because she never felt calmer than when we were together.  

Sharon was my best friend. 

Gradually, bacterial infections, kidney failure, illnesses, and hospitalizations shortened the periods of calm until finally, her paralysis and spasticity worsened, sores began appearing on her body; sores that would not heal. She bled internally and lost half her blood supply and it weakened her so that when an aide foolishly left her unattended on her bed, she fell and broke her leg. Thus began the time of her dying.

It might have been months; it could have been weeks or days even.  I no longer know or care about its duration. While it was happening, it felt like an eternity. Now that it's over, it feels like it happened much too quickly.  I wish we had more time. But then I don't, because she suffered so in those final moments. Ambivalent?  You bet I am.

When she stopped eating, Bonnie and I brought her anything and everything we knew she liked hoping she would regain her appetite and then strength enough to recover.  I got into a car accident in August because I was rushing to her with a roast beef sandwich.  One night, I fed her dinner, and she actually ate.  I was elated. "I'm so hungry, give me more."   I went home that night and slept for the first time in months, believing maybe the tide had turned and she actually might recover. Wrong.   

Once death was in the room with us, Bonnie and I let her know we wouldn't be upset if she felt the need to talk, but she refused, insisting that she was going to get better.  We three had talked about death and dying with each other since we were children. We had a pact about how the first one to die would let the other two know if there were an afterlife.  Years of discussing it was the reason we had no qualms about what to do.  She absolutely, unequivocally did not want to be fed through a tube or be given fluids to keep her alive, of that we were sure.  It was our job to carry out her wishes. 

Lots of relatives and friends that had been meaning to come to visit, actually did come to see her in those last weeks. She was always to thrilled to see everyone.  The dogs came. Buster our black pug would not leave until he was lifted to her face to kiss her.  

When my father died, that first night the thing that bothered me the most was that I'd never hear his voice again. I couldn't remember what he called me. I was determined that I wouldn't be without Sharon's voice too. When she stopped talking, I made sure to make an mp3 of every single telephone message from her still on my answering machine. There were months and years worth of cheery, sweet messages from my sister wondering where I was, telling me to not to forget this and that. Then, on the same answering machine were two or three disoriented ramblings from someone using my sister's voice expressing fear and confusion.  Sharon had began to sundown and when she was most anxious, she called me to rescue her. If only I could.  Despite my urgency about  preserving my sister's voice, I have never been able to listen to that recording and don't think I ever will.

The stress of watching and waiting for the death of someone you love so much had gotten to me and Bonnie. We were spitting razor blades at each other with our words.  Sharon hated when Bonnie and I were fighting. Sharon had always been the buffer between us.  She would listen to each of us complain about the other one and then broker a peace.  Now she had lost the ability to speak and probably knew she was dying.  She wanted us to stop fighting. Staring at us intently, out of her throat came -- “hug.” Bonnie and I spent the rest of the afternoon dutifully hugging in front of Sharon and assuring her that we' loved each other and would get along.   

The three of us used to speculate that Bonnie would always be able to get over the death of the other and that it would take me and Sharon a lot longer.  That's pretty much what's happened.  Bonnie and I are as close as ever, but it's different.  She's ready to move on, and rightfully so.  

For me, nothing feels right anymore.  It's like being an amputee who has an itch she can't scratch on her severed limb.   I want my sister back.