Tuesday, March 21, 2017

Read at Migliaccio Funeral Home

My mother might have been small in stature, but she was never a frail woman. Known as the Mighty Midget by my brother and his friends, she could hold a Schwinn bicycle in place by the seat while my brother tried frantically to pedal away. My brother gave mom and dad a run for their money. Father Chris said that when Jesus met mom at the Pearly Gates and found out that she was John’s mother, he told her to go straight in.

Mom never missed a day of work and could have qualified as a U.S. postal worker—neither snow, nor rain nor heat nor gloom of night could stay this woman from the swift completion of her appointed rounds at E.F. Hutton, as it was then known, and where she worked for 35 years. I remember begging her to stay home when my classes at Notre Dame or NYU had been canceled. But mom was stalwart. She was needed and off she went. Mom worked in the World Trade Center, as an assistant VP, when the first bombing occurred. Dad wouldn’t allow her to return to work after that. After her retirement party, mom remarked, “What am I supposed to do now?”

Mom and her sisters—as they were an essential part of her life—also never missed a weekend together. On Fridays, they would get their hair done. Saturdays were reserved for shopping at Pesin’s, Cara Carson’s, Minnie Kreps, Nella’s or Mademoiselle or David’s—all now—like mom—gone. On Sundays, we visited—mostly grandma and grandpa and some of dad’s friends, too.

Mom was spotless. From the time we were very young, she would engage us in cleaning. If you were going downstairs, mom would ask you to take a rag and wipe the mahogany bannister while you were at it. Dad once insisted that she have a maid. Mom gave in just once, when dad hired a woman. When I asked the woman’s name, she said it was “Page. Page like in a book.” Page was lovely, but did not pass muster. Mom complained to me that Page actually used the same bucket of water to wash the entire kitchen floor!

Mom was patient. I remember bringing in two bottles of milk, the kind with the cardboard tops and the cream at the top. I was swinging both of them when they flew out of my hands, broke, and spilled everywhere. Mom and I set to cleaning them up wordlessly. She never uttered a word of complaint. Not a word.

Mom was the antithesis of Daddy. She didn’t like to travel (except to her sisters’ houses), but was made to, going to Italy every other year after Dad retired from the restaurant business. I remember mom flying to Rome one Saturday and then calling me the next day. I asked what was going on. Mom and dad had been traveling with Aunt Tillie, who learned that her husband had just died. So they turned around and came right back. It was an exhausting round trip with little to show for it, but they had no choice.

After dad died, John and I moved mom into dad’s house on the Boulevard in Bayonne. We thought it was the right thing to do, after all, mom would be with her sister Little Marge. But it was wrenching for her to leave all she had known with dad and it was too soon after his funeral. As Billy Wilder said, “Hindsight is always twenty-twenty.”

Mom lived there for several years with Little Marge. They were eventually joined by their sister Rose, much to Marge’s dismay and to mom’s serious displeasure. Mom would frequently call crying about some injustice Rose had visited upon her and Little Marge hated giving up her privacy. But after Little Marge’s death, mom put up with Rose more and more. Eventually mom moved downstairs and lived with Rose fulltime.

Unfortunately, one winter, Mom developed pneumonia and was quite ill—unbeknownst to my brother and me. But Rose was stubborn. She wanted to go to Atlantic City on a Thursday and so she dragged my mother to the bus station and off they went. I didn’t see my mother until the following Wednesday. She was in horrible shape, slumped over the table. I took her to the doctor immediately, but should have called 911. The doctor was reluctant to hospitalize her, claiming she would become disoriented. To my mind, disoriented is a far better cry than dead. A week later, we hospitalized her; the antibiotics the doctor prescribed had done little good. As a result of the delay in care, mom suffered a minor heart attack for which the doctors loaded her up with the usual—beta-blocker, statin, aspirin, you name it. My response, of course, was to pitch everything within a week. She was 94 then. Mom remained totally drug free for the remaining 6 years of her life.

Eventually another woman came to live with mom and Rose: Ann Petrilla. John and I had hired Ann for 4 hours a day, but when it became apparent that the women could not be left alone, Ann moved in and stayed until Rose was moved into a home.

I recall how Ann heard some furniture being moved one night as she slept. When she made her way to the kitchen, mom was standing on one of the chairs trying to get to the candy Ann had hidden above a cabinet. Terrified, Ann coaxed her down, knowing she would have to find another place for the candy, as mom would surely repeat the dangerous climb again.

After Rose was moved to the nursing home, mom would not leave Ann’s side. She needed companionship. Mom was used to being with other women, having had 6 sisters to hang around with. Now she needed Ann.

By the time mom moved to Pennsylvania, she barely knew where she was. The change was difficult for her. So Rob and I would write the answers to the same questions she asked daily: Sandy owns this house. This house is in Pennsylvania. Rob has one brother. He lives in California. His name is Crawford. The white dog is Lucia. The black dog is Valentino, and so on.

One of mom’s endearing traits was that she was a flirt. Little Marge said she would never change, and she never did. Mom flirted with her GP, her podiatrist, her dentist, the men who came in and out of my home to do handiwork. And later, she flirted with the chaplains and the male hospice nurse.

Mom had a dazzling and very ready smile. Years ago, when mom was a young woman on Johnston Avenue in Jersey City, someone told her that her smile was so beautiful she should be on the radio. Mom used to tell that story proudly and flash her gorgeous smile. We were never sure she got the joke, or if she just didn’t care!

Mom was always hard of hearing, something that resulted from her nearly having died of diphtheria when she was a year and a half. So she compensated by asking questions and never pausing to listen for the answers. I remember back when I was in high school, a woman at David’s shoe store in Bayonne asked why mom would ask a question and never wait for the answer but ask another question. It gave me pause. Only then did I realize the extent of mom’s problem. Fact is, she rarely heard anything discussed in a crowded room or a room where more than one person was talking. This could be why mom sang the wrong words to Vicino al Mare. She sang them over and over again nearly every day she lived with us. Ann tried teaching her the words, but mom heard what she heard.

As it turned out, mom developed dementia. Mom’s memory failed, but not her ability to function or figure out what things were for and where they went. Consequently, she was always on my case to put things away: “There’s too much stuff on that dresser. Put them away.” These were things the nurses and aids needed, but mom would not have them out. And so, I put them away. Mom wore nonslip socks much of the time. Always the fashion plate, she insisted that the socks match what she was wearing.

Every single day she lived with Rob and me, mom would comment on our clothing: “Where did you get that? I love the color.” Our reply would always be the same, “At the store, mom.” She would look at me and say, “You are so pretty. You were always so pretty. You and Karen.” (Karen and Ann Marie visited mom often. And mom always knew who she was.) I will miss hearing mom comment on my clothing and telling me I am so pretty. But I will not miss hearing mom tell me to put on my shoes before I go out onto the porch or wear a sweater in the middle of summer.

The one thing I prayed for continually was patience. My friend and neighbor Barbara, who—although she barely knew me at the time—helped me move mom from the second floor to the first floor of the house in Bayonne, said I should be careful about praying for patience, as God would test me and send me plenty of opportunities to demonstrate patience. And He did.

It was tough. Rob and I cleaned and sanitized the house and did laundry continually. We had little sleep in the 4 years mom lived with us. She would call through the night, even at the end when she could barely speak. Valentino, who sometimes slept alongside mom’s bed, would hear mom and pace our room until we went downstairs. Mom never liked animals, but Valentino saw her as one of his pack. I could never have cared for mom without the two boys in my life: Rob and Valentino.

You are probably unaware, but Mom was given a choice about when she could leave. A troupe of angels came to her and asked whether she would like to pass on March 16 or on March 17, Saint Patty’s Day. Mom said, “Are you kidding! Not on Saint Patty’s Day! Take me now!” (My apologies to Bob Boyce, Bob Henry, and Sean [the bagpiper]! Mom was an uncompromising Italian.)

As for where mom is now, let me relate this story:

Several months ago, the chaplain came to visit mom and he asked her if she was going to Heaven. Mom’s reply was simple and straightforward: “Oh no,” she said, “I watch what I eat!”

I kept a diary for nearly the entire time mom lived with Rob and me and experienced what Alan Bennett had discovered as recorded in his mostly nonfiction film, “The Lady in the Van”: “You don’t put yourself into what you write. You find yourself there.” Thank you, mommy, for helping me through this sometimes unforgiving process called life. Thank you for helping me find myself. I will always love you.

Friday, March 17, 2017

It’s quiet here. Mom’s room is empty. I actually emptied the drawers and put clothing in my car for Good Will yesterday. I also emptied the closets. Taryn came by this morning to pick up the extra supplies for one of her patients. And the man from the equipment company picked up mom’s wheelchair, oxygen, walker, bed, bed table, shower stool, and potty. I have already called Jake to come and give me an estimate for tearing down the closet to make room for a dining room table. The chandelier, much to every tall person’s dismay, had been hung in the room just before mom arrived. I remember how I wanted it out of the basement and safely hung in what would become the dining room. But plans were postponed.

The room is almost as empty as I feel. There is one silly reminder of all that took place: a brown spot on the rug we were unable to remove. This accident occurred while Rob was moving mom to the potty. Mom could not move her legs at all. She was dead weight in his arms and her soiled diaper overflowed just a bit. We had to throw away Rob’s socks. Funny, though, it’s a welcome spot now. A sign of a life. Alas, a life that was. I will have the carpet torn out. But I won’t soon forget that this was the room where mom spent the last days of her life. I am brought to mind of the day I had Stanley Steemer come and clean the carpet in the living room after Lorenzo died. I cried while the workmen cleaned up the spot where he used to lay. His scent would be gone. I missed him more.

Mom’s passing was almost peaceful. She closed her eyes for the last time on Wednesday and they never opened again. She was somewhat restless, and the only pain she experienced was the discomfort that occurs from organ shutdown and failing respiration.

Still receiving phone calls. Just received one from a church member on the outreach committee. There is nothing that can fill the emptiness Rob and I feel at the moment. The room is empty, and my heart aches.

It’s tough to know what to do. I want to be with mom and feel bad when I go into the kitchen for tea or supper. But I also know mom will wait for someone to be at her side if that’s what she wants. Waiting is horrible.

Morning—March 16

Valentino woke me twice this morning. The first time, mom was still moving her arms. So I went back to bed in the hopes of getting a few more minutes of sleep. Valentino came to me again. This time, mom was still. No breathing, but she was warm. I moved her arms onto her chest and unclenched her fingers. I fixed the pillow under her head, as if it would make her more comfortable. I spoke to her and kissed her and told her I would miss her. Then I told her to find daddy and my dogs Lorenzo and Lucy and Roxy. Wouldn’t it be great if she met them. “Say hello for me. Tell them I love them and I miss them terribly, as I will miss you.”

I called my brother and mom’s brother in Tokyo, who bade her a tearful good-bye. I rang cousins Karen and Patricia and wrote to everyone else. The phone has been ringing off the hook ever since.

I called hospice and the whirlwind began. The women from hospice came. I took their photos and they said their good-byes to mom. Lorraine, one of our CNAs, stayed with mom a bit and she had her last cup of coffee with us. The most difficult part was seeing the undertakers put mom in a black bag, zipper her up, and haul her off. But I knew she wasn’t in there.

I wrote notes to everybody who knew mom, family and friends. I approved the obit and edited my eulogy. I packed up mom’s things for Good Will, put aside the hospice equipment, and set aside supplies for another hospice patient. I chose photos to be given to the funeral home and have only to purchase a USB port and load the photos onto it.

It’s nearly 4:00 pm, and I have just had breakfast—a cup of tea and some herb baked eggs (but I forgot the dill). I am going to sit now and wait and pray. Two guests are coming tonight: Cheryl and Deb. As a matter of fact, Cheryl just arrived. More later. The night is young. My dear friends are with me in prayer and in person. It’s wonderful. I know this will end eventually. But I will always have my memories. My memories of mom and our nearly 4 years together in this house with Rob, Valentino, and Lucy.

Our LPN Margie came to visit as did our neighbor Barbara, another LPN. Margie said she cried on the way. Both were so helpful. This is so heartbreaking. There is no age—I think—at which it is easy to lose a parent. Particularly one who was so loving. A pain in the butt, but loving. I probably will never carry a sweater in the summer, but I will think of mom when I leave without one. And I won’t always wear my shoes out onto the porch, but I will think of mom when I go out there barefoot. And I will remember her favorite flower: the huge violet-colored dahlia.

My brother John and I sat for a while and talked with mom. My cousin Karen called twice and with tears told mom she loved her. Rob, of course, spent time with mom. He held her hand and sent his messages wordlessly. We are all blessed to spend any time with mom at the end.

My urge is to pick up the phone and call mom, but then I remember she is here with me—in a sense. There will be no talking to mom or being with her anymore. And I won’t hear her tell me how pretty my blouse is or how she likes the color or hear her ask where I bought it, or tell me how pretty she thinks I am. My mom is leaving me, and I am having a tough time of it.

More later…

 

 

Wednesday, March 15, 2017

We still have not shoveled the entire drive, and we cannot open the porch doors. They are blocked by mounds of snowdrifts. Everything is an ordeal today. I must wear cleats on my boots and must smear Vaseline on Valentino’s paws before we go out. But Rob and I cleared the front walkway for emergencies.

Although I called the CNA at hospice and told her not to come today owing to the ice on the road, I regretted it in short order. Mom had a very bad night. She moaned in pain, but we didn’t know where the pain was coming from. We gave her some Ativan and hoped she would be able to sleep, but it was a fitful sleep. Yesterday was her worst day. I know organ failure is in progress. Her left hand is blue and cold and she is still asleep, but breathing more rapidly than usual. This deterioration is too difficult to watch. I tried giving mom some Reiki, but I needed to get away from her. I told mom to go. It’s time. This body is broken. We will be fine. But I didn’t mean the last part. Or maybe I did. I will go back and lay my hands upon her again and tell her that I love her. I just don’t like saying it with such finality.

I called my brother John and he will be on his way shortly. My dear neighbor Barbara is also on her way. I am so blessed to have friends and neighbors all wrapped up in one.

And I have already told mom that I love her and that her body is broken and worn. It’s time for her to leave it and be with daddy and her parents and her siblings—Little Marge, Big Marge, Mary, Helen, Rose, Vera, John, and Sam. What a reunion it will be!

 

Wednesday, March 8, 2017

How many times have I lectured those who cared for patients at the end of life that a refusal of food is natural. It requires a lot of energy to chew, digest, and eliminate food and the process can result in great discomfort. Sometimes people eat to placate their caregivers. Certainly I saw this in my dogs many times. But when the energy or desire for eating is gone, nothing can be done.

Today, the nurse visited mom to re-certify her for hospice. She noted that mom’s heart was strong, her lungs were clear, and she still had bowel sounds. But we could not get a reading of mom’s oxygen saturation, because her extremities are cold and her circulation is poor. The nurse also noted that mom’s mid-upper arm circumference has greatly diminished. All in all, mom is in “good” condition, apart from the fact that she is wearing out. But what about that mid-upper arm!

Inspector Clouseau: The obvious conclusion?

Me: I am starving my mother!

Inspector Clouseau: No, you idiot!

I worried all night that I was not feeding mom enough. When the nurse asked how many hours mom sleeps during the day, I replied, “Nearly all the time.” Mom is awake only when she needs to use the potty. Immediately afterwards, she falls into a deep sleep and cannot be disturbed. So do I wake her? Do I suggest or insist that she have something, anything to eat? Do I try to re-establish her former meal pattern?

No. Mom is setting the pattern now. The best part is that she is clean and comfortable and not in any pain. She is losing weight rapidly, but I will ask her when she is awake whether she would like to eat. If she says no, I will honor her wishes, however difficult it is for me. One’s natural inclination toward someone you love is to nurture them—back to health, if possible. The if possible is the operative phrase here.

Tuesday, March 7, 2017

 Mom awoke rather late again today. We sat her on the potty and I washed her down as much as I could. I changed her nighty, then Rob put her back in bed, where she fell deeply asleep in seconds. She argued in her sleep a bit with Ann, mom’s former caregiver in NJ. I walked in just at that moment and asked mom if Ann were giving her a hard time. But she didn’t remember either the dream or her reverie. Lorraine, our CNA, came a couple of hours later and helped clean mom a bit more. But mostly, we allowed her to sleep.

We’re all still tired today. Nonetheless, Rob and I did some laundry, vacuuming, and floor washing. Rob scrubbed the kitchen floor, which must eventually be replaced, as mom’s walker wore a path on it. It occurred to me that we could put the hall runner down once again, since mom is no longer walking. So I did. I also restored my special facial wipes and body scrubbers to the bathroom cabinet. Mom once reached in there looking for toilet paper and used the expensive wipes for her personal use. Since then, I hid them from her. I similarly hid our toothbrushes and hairbrushes to prevent mom’s indiscriminate use of them when she first moved here and was able to walk to the bathroom. Restoring the house back to its original order is a bittersweet job, but it’s keeping us busy.

Mom is in what was supposed to be the dining room. I had the chandelier installed several years ago in preparation for the transformation. But then, mom moved in and halted all such plans. Consequently, everyone of any stature has had to duck or watch their heads on the brass fixture that will one day safely hang over a dining room table. From time to time, I think about calling our carpenter friend, Jake, and asking for an estimate to knock down the closet in that room and redo the flooring. But it seems callous. Mom is still alive. She is still in that room, and it’s not a dining room. It’s mom’s room. I think it will always be mom’s room.

 

 

 

Monday, March 6

Mom awoke late in the day. We moved her to the potty, gave her something to drink—she took two sips—and now she is back in bed, propped up with pillows and taking oxygen. We kiss mom on the forehead, allow her to rest without interruption, but Rob and I both feel as though we are not doing enough. Should we be waking her to give her something to eat, something else to drink?

The answer, of course, is no. She is winding down, and it’s tough to watch. Mom has so little energy that when she sits on the toilet, she begs to be put back in bed. If I take too long to clean her, she complains, “That’s enough. Put me back. Put me over there, Rob, please.” She tells Rob she loves him, and she is off to sleep again.

We listen to the sound of the oxygen machine, at least until she pulls the tubes off her nose. Then we get some quiet.

We are waiting and it’s tough. The inevitable is too sad to ponder, even though mom has so little left. I look at photos of her a year ago, just a few months ago in fact, and she is a profoundly different woman. Even Valentino is aware of the change. As noted before, he sometimes sleeps alongside her bed and always alerts me to her calls.

We all remain tired. There is little real rest. I wonder what we will do when we find her gone, but then I remind myself that she is still here—in a manner of speaking. Mom is really between two worlds. People remind us that we were lucky to have her so long. But I wonder. How many of those years were good years. Fortunately, there is a higher power in charge, and her lingering here is of greater moment than I will ever reckon on my own.

Sunday, March 5

It is past noon, but we just woke mom and took her to the toilet. She slept so peacefully and completely, it was difficult to stir her, but we did. I was reminded that she sleeps the sleep of the dead. Undisturbed, she breathed normally. She was clean and warm. It seemed a shame to awaken her, to uncover her frail little body, to expose her to the cooler air, to challenge her modesty. What’s the point, I thought. But we had little choice. Mom needed to drink something and to relieve herself, whether she knew it or not. With her eyes still closed, Rob carried her to the potty in her room. Once seated, she pulled her nightgown down—an automatic effort to retain modesty or perhaps she felt a draft. After she had relieved herself, I cleaned her and changed her, while she begged Rob to bring her back to the bed. Rob first tilted the bed toward the head so that he could pull her more easily up toward the head of the bed once he deposited her limp body onto the bed. I did the usual: changed gloves, emptied and cleaned the potty, and disposed of the waste and soiled products.

We do this all without a word. Rob knows what needs to be done next, as do I. We are team. Tireless, no. No longer. We are exhausted. There seems no rest in sight. When mom called and cried all night, there was little chance for sleep. But now that she sleeps through the night, we sometimes lie awake wondering. Wondering if she will call, but wondering mostly if she will be with us in the morning.

Each morning, we check her breath, her color, the temperature of her skin. Each of these elements is a potential degree of separation upon which we might realize loss. Even though we know no one will live forever, we fear the final proof that a life is truly over. The verification of loss will be terrible.

Every new physical limitation she experiences presents another cause for mourning. The toll is difficult. My energy, Rob’s energy, the energy of those who come to visit are drained—almost in deference to the failing body. Valentino, too, lies beside her bed. We respect the process of dying. We are in awe of it. We respond to it. We are baffled by it, even though it’s a daily part of our lives—plants, trees, insects, animals—nothing and no one is exempt. Yet each time, the process remains new, unthinkable almost, perhaps because each creature’s life and each person’s life is measured differently. And every creature’s end will be reckoned with differently.

You never know what you will be dealt. It never occurred to me that I would be taking care of my mother for nearly 4 years through the age of 100 and that she would eventually pass in my home. I can only say that I am glad we don’t know in advance what’s in store for us or those whom we love.

Friday, March 3, 2017

Mom sleeps most of the time and eats and drinks very little. When we do have her on the potty and she is sitting up, Rob takes the opportunity to give her something to drink. Mom can no longer sip through a straw, or at least not all of the time. So he starts by giving mom a spoonful of water to prime her for drinking.

Mom still calls. Sometimes for her sister Marge, sometimes for her mother. But mom sleeps most of the time and we have taken to propping her legs and back and heels with pillows to prevent bedsores. All in all, mom is still fairly happy and seems to be comfortable. She is not eating more than a quarter cup to one-third of a cup of cereal a day, and getting her to drink can be challenging. Consequently, mom is getting smaller and smaller. So frail. Had mom been in a nursing home, she would have been long gone.

Sometimes I think of Brooke Astor and how all the money in the world was no guarantee of comfort or a good end. That Mrs. Astor laid untended in her urine on one of her silk damask couches is unthinkable.

The end is never an easy time. You truly learn to live in the moment. Yesterday, I was quizzed by the social worker and the current chaplain about how I will feel when mom passes. I protested saying that she is still alive. We are making plans and doing things dispassionately as needed, but to know how it will feel when my mother is gone is useless conjecture. I despise when the news hens on TV ask “What if?” Who knows and frankly who cares about what might be. I will know of the grief of my loss when it occurs, and then and only then will I deal with it.

So to all the nurse assistants, nurses, doctors, and chaplains, who ostensibly try to help you through these wrenching times, buzz off! Mom is still here and we are still caring for her in many ways. We will heal in our own time and in our own way. No amount of your talking about mom’s passing will help us while she is still alive. We cherish this moment: the moment that mom still needs our help, our presence, and our love.