My brother called me that Thursday and told me my mother was in the hospital, or that she was going into the hospital, I actually don't quite remember which one. I said I would try to get down the next week or so, and he said he thought it was important I get down there in the next day and so. I left the next morning.
My mother had Parkinson's Disease, had it for about fifteen years. For the last two years she'd had trouble speaking, and she seemed more and more trapped. She had brain surgery, which really didn't work for much more than two or three weeks at a time. I think she hadn't walked in probably a good year.
So I called my daughter and asked Sef if I could stay with overnight at her place. She was living in Deerfield Beach and my mother was in the hospital in Coral Springs, about twenty minutes away. I also asked if she would meet me at the hospital. And she said of course she would. So I drive down and I got there around 11, and Sef met me outside the hospital. And we walk in together. I think we met my brother on the way up to the room, or perhaps outside the room. Apparently my mother was not able to swallow anymore. I hadn't seen her in, I think, about two months. I had called from time to time, but because she was unable to speak, she would try to speak on the phone but end up crying, so I alternately thought I should just call and not have her talk, or I should not call so as to not make her cry. So I probably didn't call her as often as I might have. I certainly didn't call her as often as I wanted to, because the crying was hard for both of us. She was such a dynamic person, it was harder to hear her not be able to speak than it was to see her not able to move.
So we went in to see her. My father had called the night before my brother did, and he said she had not been eating, and I forget what else he said, but he was considering taking her to the hospital. I suggested he take her right away—from his description she needed to be there—but he was wondering, vacillating. I believe it was my brother who finally convinced him to get her to the hospital.
Went in. She really looked very "shell-ish," nearly unable to move, unable to eat because she couldn't swallow. I went in, gave her a hug, Sef gave her a hug, I did my best to not cry and I didn't. My father, of course, takes me outside immediately to talk to me "in secret"—he was always telling secrets, always took me aside to whisper things—"Your mother's not doing well, you're mother's not this or that," as if my father still thought she was 40 and playing croquet, as if it were to be a surprise to him that she's sick. When he'd call and say she's not getting better, I'd say, "What did you expect, this is what happens with Parkinson's." I think he was trying to hold on to her, but I found it frustrating. He would whisper it because he didn't want her to hear.
So I sat with her, held her hand, Sef was on the other side, held her hand, talked to her. She made a few sounds here and there, she could move her eyes a little bit. Apparently a Swallow Test had been ordered—I'm not sure what the logistics of a Swallow Test are, I really don't need to know—but they came and got her, wheeled her down, and before they wheeled her back up, I spoke with the nurse and asked what the plan was, what the possibilities were. If the Swallow Test came out well, she would be able to eat. If the test did not come out well, she would be unable to eat, and the only way she would be able to receive nutrition would be through a tube going through her side and into her stomach. But the Parkinson's medications can only be administered orally. So it means the Parkinson's would get worse and worse. So even that was not the best option. If she didn't get the tube, she also wouldn't get the medication. So IV feeding would be useless.
My brother's wife, Amy, worked at the hospital as a pharmacist, so anything needing clarification were made clear, She explained that the Swallow Test indicated she couldn't swallow. That even ice chips would very easily be aspirated. She was wheeled back into the room, put back in the bed, and my father pulls the nurse outside and around the corner—and by then a friend arrived, this guy I didn't know—and my father asks the nurse the results of her test.
"Why don't you ask in front of mommy?" I say.
The nurse cuts him off and says, "She has a right to know, and I will not discuss this with you unless she's present."
I thanked her, and we walked back into the room. The nurse addressed my mother directly. She told her that the Swallow Test indicated she was unable to swallow, would aspirate anything she tried to eat, was at risk for choking, that the Parkinson's meds can only be given orally, had to be digested, so the only possibility was a PEG tube. And that was the only option.
So she asked, "Do you have a Living Will?"
And my father says, "No." At that point my father and my brother get into an argument about why there is no Living Will. I don't remember if it was me or my brother who asked him, "Did it never occur to you that this day would ever come?" My father was crying. Denial. This was no time to have an argument about why; the fact remained that they never discussed what she had wanted.
A long time ago, before she got sick—twenty years ago—my mother told me that if she ever got like my grandmother, unable to take care of herself, she "wanted to be shot." I had to repeat this to the nurse, saying we had discussed this in the past, and she looks at my mother and says, "Is that true?"
And it's the last whole word I can remember my mother saying: "Yes."
And the nurse looked at me, and said, "That's very clear." And so she continued to ask her a few questions: "So that means you do not want a PEG tube?"
And again: "Yes."
"You understand that means no nutrition, no food?"
"Yes."
So I was standing behind the nurse at that point, so she could talk as close to my mother as possible, and my father asked what that means, and she said, "It means your wife does not want to be fed, and wants to allow this to take its natural course."
And I'm watching my mother, and I think it was at that point that she realized she was going to die, that all the days she had left could now be counted on the fingers of one hand, and that was it. I saw her realization that she was about to die. And she just started to cry. And she just cried for quite a while. And people held her hand, and hugged her.
My brother kept saying to her, "It's going to be all right, it's going to be all right."
My father kept saying, "Don't worry, Sheil, don't worry Sheil."
I, on the other hand, went up to her, and said, "I don't know why they're telling you everything's going to be all right. You know and I know what the truth is. You'll be fine, but you won't be here. Everybody loves you. You did good. Rest." And I kissed her on the forehead. She stopped crying, and a few minutes later she closed her eyes and fell asleep.
My father had brought in a CD player, and he was playing Johnny Cash, Nat King Cole, John Denver. I think her hearing was perfect. No TV, just music the entire time. The nurse had left at some point to go get the social worker to have her come up and talk about her options. It was a small room. I guess there were four of us in the room, Amy would pop up from time to time, so five. And directly above her, not four feet above her head, a bank of fluorescent lights on the wall, and fluorescent lights on the ceiling above, and bells were dinging and people calling on the loudspeaker. It was not at all a restful room. So the social worker comes up and we go down the hall to talk—my mother was still sleeping and we needed out of the room for a while. I had Sef come with us because I actually depend on her sometimes to have a clear head when I don't. The social worker wants to talk to us about hospice, which I think is a great idea, and the sooner the better. She couldn't stay at the hospice in the hospital, because you can only stay there for three days, and starving to death can take up to two weeks. My father keeps saying he can't afford hospice. The social workers keeps saying Medicare would take care of it. "My insurance won't take care it." "Medicare will take care of it completely," back and forth.
She told him of Hospice by the Sea, which I have heard over and over is the best care anyone could ever want. He wants to see it first. He think it's going to be dingy, old.
"Is it going to be worse than the room she's in now, with the fluorescent lights and the loudspeaker?" I ask.
"I don't know," he says. "Why don't we go see it tomorrow morning?" he asks.
And my daughter asks him, "Why don't you go see it NOW?"
"Well, everyone's tired, maybe we should rest, see it tomorrow morning."
My daughter insisted: "Why don't you think of her? Get her out of that room, get her somewhere comfortable?"
I ask the social worker: "Can we do it tonight?"
"Yes."
Father didn't know if he'll like it, didn't know if he could afford it. Don't remember my brother saying much, but he probably did.
I asked my father, "What are your choices? Look at your choices. She can't stay her more than three days. You cannot bring her home. This is her only choice. If you like it when you see it, if you don't like it when you see it, if it's a palace or a dungeon, this is your only choice. Why are you putting it off?"
I looked at the social worker and she said, "He's right, this is all you can do."
And so arrangements were made to bring her to Hospice by the Sea that evening. It was a Friday evening. So he wants to go there first to see what it was like. I look at the social worker and said, "Let's get her ready to go, we'll get the papers signed, we'll go to Hospice by the Sea first and be there when she arrives." I ask my father if that works for him, and it does.
In moments here and there, my daughter keeps asking me, "What did he think was going to happen? What did he think his other choices were?" In the meantime, she had called in to take off work for the evening. She told them she thought she might have to take off the next day or two . She could not afford to do this, but she did it anyway.
So I went back into the room to see her, got the papers signed, and got ourselves over to Hospice by the Sea. And my father is starting to fret: "I can't do this, I can't let her starve, what am I going to do?"
We get there and the place is absolutely gorgeous. It's quiet, she has a large room, could have had a party in her room. This is the idea behind the design—everyone can come to be with the person who's dying. We open up the doors in front of the room, and everything is built around this garden with beautiful tropical foliage.
I know at some point we ate, don't remember when, don't remember what. My mother gets there around 11:00 at night, and they bring her in to the room. My father asks for a cot, and they bring him a rollaway bed so he can sleep right next to her, and he goes to find the nurse in charge. And he is beginning to panic. I don't want to say he's not rational, but he's walking around nearly hand-wringing: "I can't let her starve, I can't do this to her, I can't watch her starve, I can't starve her to death!" There wasn't much that we could do to calm him down. The nurse explained that she couldn't eat anything, and she also wouldn't be able to drink anything. You can go twenty-one days or longer without food, but you can't go that long without water, and they expected her go to within seven to ten days. I asked about IV fluids. She explained that she couldn't do that, because as you die, your body doesn't process fluids properly, and that means no fluids.
My father is crying, as you might expect; I'm not handling this well either, but I'm the one who has to. When my maternal grandmother died, despite the fact that my father and she hated one another, he fell apart, and I had to handle everything. Despite the fact that my second child had just been born, and I was out of work, evicted, and had moved back to south Florida to look for work, instead I had to handle funeral arrangements. My family doesn't handle this death business very well.
We talk to the nurse, and we decided they would settle down for the night, go to sleep, and we would be back in the morning. Just before we leave my mother starts making noises like she's hungry. This just makes my father more upset. And none of us knows what to do; there is absolutely nothing we can do about it. My father is asking if there's some way we can feed her. The nurse tells him that they can try feeding her—if she wants. But the likelihood is that she will choke. And their recommendation is that would not be the best thing. Let her go to sleep, let her rest.
So I go back to my daughter's apartment with her and settle myself down on the couch, and it's too short for me, which is really saying something. It's about 1:00 in the morning, I think.
I'm not going to be able to sleep anyway, so I decide to talk to my mother, me on the couch in my daughter's apartment, my mother in her room in the hospice. About two weeks prior I had gotten a copy of The Tibetan Book of the Dead, and had started memorizing it. I had no reason to do this; I don't like memorizing things. And so I decided to recite the first paragraph to my mother, first as it was written, and then departing from it, paraphrasing:
O nobly-born, that which is called death hath now come. Thou art departing from this world, but thou art not the only one; death cometh to all. Do not cling, in fondness and weakness, to this life. Even though thou clingest out of weakness, thou hast not the power to remain here….Be not attached to this world.
O nobly-born, what which is death has come to you. You are leaving this world. Do not hold on. Let go. Rest. O nobly-born, death is coming to you. You are leaving this world. Rest.
I kept saying it again and again and again to my mother. And then I said to her, "Please don't do this to Daddy. You know he can't handle this. He can't watch you starve to death. Please just rest, and don't do this to him."
At some point I fell asleep saying this. And then I hear a phone ring. It's my daughter's cell phone. And know what the call is. Sef comes out of the bedroom, walks over to me and says, "Dad, Grandma died."
And I said, "I know."
I was curious why my father called my daughter instead of me. He insists he called me, but Adam and Sef are nowhere close on his cellphone address list. It was five minutes before six. We got up, got dressed, not slowly but not quickly—we were both exhausted and feeling a little spacey.
Sef drove to Hospice by the Sea, we stopped on the way for coffee at a Dunkin Donuts, we needed something—protein, milk, something, because Lord knows when we'd be eating again. Five minutes later were were at the hospice. My brother was already there. My father was by my mother. He was standing over her saying, "I only left her for a half hour." He was beside himself—he had gone home for some clothes and some food.
And I saw my mother. And the first thing that occurred to me is that she looked like a dried fish. There was nothing there. Empty. Gone. My father kept stroking her forehead, kissing her forehead, telling her, "It's going to be all right, it's going to be all right, this is not how it was supposed to go, we were supposed to go together," on and on and on, telling her she was beautiful, telling her she would going to be all right. I imagine he was telling himself that, but I really don't think he believed it. We—my brother, daughter and I—went to speak to the nurse. She told us that she really didn't understand it. A few minutes after my father left, my mother started aspirating liquid, that her body had stopped processing fluids completely. The nurse said she couldn't suction out her mouth fast enough, and that her heart congested and she simply died. She kept suctioning out her mouth to make her as comfortable as she could, and it took about fifteen minutes. She died about five minutes before my father got back. The nurse said she had never seen someone in this state go so quickly; it should have taken at least three days, minimum, probably five to seven. She really did not understand.
I told her I did.
And that was Saturday morning.
I know we had to get my father to eat; I'm not sure where we went or what we did. I think my brother took my father out while we waited with the body. My daughter and I waited because someone had to be there with the body until someone came to claim her, and that way we could give each other periodic breaks. Good thing we stopped to get her coffee; that had been my daughter's idea, and she's always right.
The funeral home arrived for the body around 9:30 in the morning, a very large man in a suit. I was supposed to make sure she was going to the right funeral home—my father was worried—so he could get the right dress to her; I was supposed to give the man a ring that he could put on her finger. So he's wrapping her up, in the shroud first, and up to this point I have not cried. As soon as he put the cloth over her face, that was it: I started crying. He puts her in the body bag, and wheels her out.
I went and thanked everyone at the hospice. They told me they were worried about my father, and wanted to make sure he was getting care. I said I rather doubted that he would. He had spent fifteen years taking care of her. There were times when we were not sure whether he was doing a good job or not, but how were we to know, and what could we do? We tried making him get respite care, but he said he couldn't afford it, yet he never checked with Medicare. We tried getting him support care for himself, but he wouldn't' do it. At the hospital we were told that my mother was in wonderful shape. They rarely see people at her stage so well taken care of, and the job he did taking care of her was, in the nurse's words, "heroic." But I seriously doubt that he'd get any care for himself at this point.
My daughter insists we go back to the apartment, shower, eat breakfast. She takes me to Flakowitz of Boyton, a rather famous deli and restaurant. It's crowded, a Saturday morning, she says the place is good. I fret about not being able to find food that's good for me. She tells me, "Eat what you want, your mother just died!"
I said, "You mean, I can have comfort food?"
She tells me to shut up and get what I want. I don't remember what I got, but I remember it was really good.
As I eat, it dawns on me. I am a motherless child. I say this out loud. Sef nods. I say, "This will take some getting used to. I wonder how long."
"It's only been a few hours," she says. She wishes she knew her grandmother when she was able. She became sick when she was ten. She didn't know her when she hiked, rode bikes, prospected for precious stones played croquette, gardened, pained, did woodwork. When Sef knew her, she was barely still able to crochet.
My son does not know her without a wheelchair, barely able to speak.
I think we were meeting with the rabbi around 1 at the Funeral Home of Lantana, about 20 minutes north of there. It was Shabbos, which means my mother could not be buried that day. It's Jewish tradition to bury the dead within 24 hours unless it's Shabbos, in which case it's two days. At some point that morning I called my wife, Lee, and let her know. She had known my mother for about thirty years, so it was more than just her mother-in-law having died. She said she would throw some clothing in a bag for me, something appropriate for a funeral, and she would rent a car and come down, and she'd be there sometime that afternoon. We had only one car at that point.
We all met with the rabbi, and I instantly liked this fellow. He wanted us to write down things about my mother, things he should mention, things her friends would know, things he should know; he wanted us to treat him as though he would have been her friend. He made sure he pronounced her name properly, what she would want to be called, what she would want people to know. Then there was the matter of planning the funeral day. It was Saturday, the funeral would have to be Monday.
"Why not Sunday?" I asked.
"We can't get the grave dug by then."
"Why not?"
"We don't have gravediggers on Saturday. We'd have to pay them time-and-a-half."
In Jewish tradition, someone has to sit with the body continually until it is buried and say prayers over it, and that's a paid position, a shomer. We'd have to pay a shomer to sit for two days. I ask the rabbi how much that would be. He gave us the figure. I ask him how much time-and-a-half for gravediggers would be. There was a ten-dollar difference in cost, about $250 more one way or the other. So I suggested we simply ask the gravediggers to come in and work some overtime, and spare some old Jew who didn't know my mother from sitting with her and saying prayers over her. So that was settled.
We met my wife and my son Alek at the Ft. Lauderdale airport where the car had to be turned in, and we went to get a hotel room. I wanted an inexpensive hotel room; my wife wanted a nice one. We ended up at Embassy Suites. Why? "Because," my wife said. "Because your mother just died!"
That week my father-in law went into the hospital for a cardiac catheterization. I think that was it. But he was surprisingly blocked, especially considering the excellent care he takes of himself including his diet. He ended up in surgery and was, understandably unsettled. Lee needed to see him. It was bad timing, to be sure, but it was what it was. I could not stand to be by myself so I went to Pembroke Pines with my wife and kids to see my in-laws.
My mother-in law hugged me, asked if I was ok, did her best to be kind. I was exhausted and sat. My father-in-law wanted to talk and did so. He talked to me for nearly three hours straight. I dozed, woke, nodded, listened, dozed. He talked as though nothing different had happened to me today. As though today, for me, was nothing of note, was any other day.
We left. Lee commented on how good I was. I would normally have brushed the comment aside. Not this time. Yes. I was. Better than could be expected. Better than was reasonable. Above and beyond. Lee squeezed my hand and we headed back to Deerfield Beach.
That evening, we ate dinner—the whole family was together—and I watched how differently people handled the obviously empty space. There was an empty seat next to my father. I thought it needed to be empty for a while; my brother wanted me to move over and fill it. We sat there for a long time; I don't remember what we talked about.
I feel crooked. I feel unbalanced. Like one shoulder has a weight the other does not. Like one ear is sensing movement differently than the other. A part of me that has been around for 45 years, that my brain has developed knowing was there, is suddenly gone. It does not feel right. The world does not feel right. It is lopsided. I no longer have two parents. I have one. Something is missing. I wonder how long this will last.
Back to the hotel room. Lee drags me down to the pool and the hot tub. We walk on the beach for a while, then go to the hot tub. A blazered gentleman came over and said the hot tub is closed, it's past midnight. She tells him he really needs to sit in the hot tub tonight. He says, "But the rules say the hot tub closes at 11." She tells him my mother just died. He said, "Stay as long as you want." At some point she also got two gin and tonics down me, which is one-and-a-half more than I usually drink.
The funeral was set for 11. I had called my oldest friend, Carol, to let her know. She knows me since I'm 13 or 14; she insisted on coming to the funeral. I don't remember who else I called. The next morning I'm getting dressed. I pull out the pants and they are not mine. Apparently my wife brought a pair of her black pants, a drawstring number, pleated, which looked very nice—on her. It's Sunday morning; my father wears a size 42, so nothing he has will fit me; my brother is six feet tall, nothing of his will fit me. Lee's pants do fit. So I wear the cute little drawstring number. I pull out the shirt. It is a black silk shirt. I figure if I wear this shirt, I will melt off at least half a dozen pounds before the funeral is over. I go to put on the shoes. They are my seventeen-year-old son's skater shoes. But they fit me. So I am not quite dressed in the manner one would generally assume a son should dress for a funeral.
We headed to the funeral, which was held at the cemetery. We start at the chapel. This is the same cemetery where my father's mother is buried. The couples are buried one on top of each other. There are four spots, each for a couple, so it's a two-story underground concrete sealed horror. The caskets are lowered, then a concrete slab is lowered on top of that, then the marble lowered on top of that. Originally my father and my mother were supposed to be next to his mother and father, but my mother insisted she wanted to be at the other end of the grave "condos." Those who have read "Funeral, Expurgated" will understand why.
People start arriving. Some are crying, many are in wheelchairs. They were very involved in Americans with Disabilities Act activities. I don't remember a lot about the funeral except that I felt terribly self-conscious about what I was wearing. Carol found me and hugged me, and we went off and talked for a while, she and myself and Lee.
At some point my father went to the casket, and opened it up to look at her. He asked me if I wanted to. I said I didn't think I could.
Then we were told it was time to take our seats. My father, brother, and I were in the first row; Carol sat behind me; Lee, Sef, and Alek sat behind her. It was a bit of a wait, maybe five minutes, for the funeral to start. I leaned back and said to Carol, "These pants are chafing a bit, but I look so cute in them! Leave it to me to get into my wife's pants at my mother's funeral!" She starts laughing. A few other people laughed. A few people did not find it funny. I'm sure, however, that my mother would have, and I was fine with that.
Carol knew the rabbi, said he was a perfect choice, and indeed he was. He did a wonderful job, though I don't remember any of the details. You would think he had known her. He was splendid. The rabbi asked if anyone would like to speak. I raised my hand. Later my brother would tell me, "I knew you wouldn't be able to not speak," and I said, "I knew you wouldn't be able to, so I figured I would."
I told everyone that I had learned my sense of morals from her, and if that's all she'd ever taught me, it would have been enough. I said that the last thing I had told my mother was that everyone loved her, that she did good, and that it was time to rest. I don't think I spoke for more than a minute. We moved out to the graveside. I immediately went to the casket to help roll it to the grave. "You don't have to," I was told. But of course I did. I literally buried my grandmother; I would certainly have done the same thing for my mother, if I could have. The least I could do was help push the casket out to the grave.
One of the four graveworkers stands aside so I can help roll the casket out. Even the grave workers are dressed better than I am. It's a long walk from the chapel to the grave, and it's August 30 in south Florida in a treeless cemetery. I am wearing a black silk shirt, black linen pants, black suede shoes, and it's a loooooong walk to the grave. I don't remember what was said at graveside; I know that Kaddish was said. I know that other prayers were said. There was a canopy with some chairs set for people; I stood by the grave the entire time.
And then the funeral was over. The casket was ready to be lowered into the grave, which is done by machine (this is not how most Jewish funeral go), and I had my hand on the casket as far down as I could—I'd have preferred lowering it ropes myself, but that wasn't available; I think we definitely lose something by having all this stuff mechanized. We were given little plastic baggies of dirt, about the size of two ketchup packets, to throw on to the casket. I wanted a shovel and a pile of dirt, and what I got were tiny baggies. I wanted to bury her and all I could throw in was a teaspoon of dirt, so I grabbed all that I could find—it didn't matter if anyone else had any.
We were then told that it was time to leave, because it was time to bring in the backhoe to load in the concrete that would be lowered halfway down the condo so it would be covering my mother's casket. The canopy had to go. The plywood on which the seats sat had to be moved so the backhoe wouldn't eat up the grass.
And I told them: "No." Very matter of fact. No. I was going to help, until it was completely sealed. I told the rabbi, "I don't get a shovel, I don't get any dirt, but I'm going to damn well see this thing sealed." He said he understood.
The first piece of concrete had a bolt hole in each corner. Large eyes were screwed into each, chains attached to those, the four chains attached to a hook on the backhoe. It was picked up moved, positioned, lowered. And I stood there, a little too close for safety, until I could catch the last glimpse of the coffin as the slab covered it. Then one of the workers had to jump in and unscrew the bolts and take the chains off. Lee wisely kept me from doing that; I was very bothered by someone I didn't know jumping into my mother's grave, silly me.
Then came the second concrete slab to cover the top half of the two-story grave. Same process. I helped unscrew the bolts and take off the chains, since this was just below ground level and I could reach it. Then the same process for the marble grave top. It's positioned into place with my hand on it. I helped take off the chains, unscrew the eyes. And then the workers come over with a bolt and a large brass washer, and that is screwed on, attaching it to the concrete grave box.
I said to one of the workers, "Mind if I do that?"
And he says, "You're not supposed to."
And I said to him, an older black fellow, "If this was your mom, and you had no shovel and no dirt, what would you do?"
He said, "I would hand you the bolts and hand you the wrench and say, "There you go.'" And he did. And I screwed my mother's grave closed.
That afternoon we—family, extended family, friends— went back to my brother's house. Amy had gone ahead, picked up platters of sandwiches and desserts. And we talked. I changed into normal clothes that were actually mine. I met the son of my mother's oldest friend. My father's brother came down. I sat with Amy and said that I would prefer that we manage to get together under circumstances other than this from time to time, that it would be nice. We were there about two hours before we left. Everyone needed rest. Lee and I and the kids headed to Carol's house. She had made us macaroni and cheese, and other assorted things we shouldn't eat, and we sat and talked. I needed that comfort after this weekend. Next to Lee, she's the person I've known the longest. Sometime around 6 we left and drove home, less than a two-hour drive. I drove there with a mother. I drive home without one.
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