My mom had Alzheimer’s. And diabetes. And congestive heart failure. And glaucoma. By the time we – reluctantly – put her in the nursing home, she was having seizures every few minutes. We’d taken her to the hospital on a Sunday afternoon and my sister and I sat with her in the emergency room. Hours dragged on. Cindy and I told stories of our childhood; Mom woke up every now and then. She wasn’t quite sure where she was, but she seemed content to be with her two girls.

After several hours, my mom’s on-call doctor was tracked down by phone. She had never met my mother. She refused to have Mom admitted to the hospital. Told the emergency room staff to send her home. We literally had to stuff Mom in the car – she was very unsteady and it was a challenge to get her to bend in the right places. At home, we reversed the procedure, and Paul and I dragged her up the walk and into the house. We sat her at the kitchen table in front of a bowl of chicken soup and she immediately had a grand mal seizure. So we dragged her (really, she was like a giant ragdoll) into her room, where she had several more seizures.

I called the doctor (remember, she’d never met my mom), and explained that we couldn’t handle the constant seizures and begged her to admit Mom to the hospital. The sneer in the doctor’s voice was chilling: “I will not be a part of your obvious ploy to get your mother’s nursing home care covered by Medicare!” I was stunned. What I didn’t know, but soon found out, was that if someone is sent to a nursing home directly from a stay in the hospital, Medicare covers the first six weeks of their stay.

The situation at home was untenable – there was no way we could care for Mom in her current condition. By this point in time, we’d been living with and caring for her for eight and a half years. I’d been able to handle the other challenges – falls in the night, diapers, bathing, “baby-proofing” the house so that she wouldn’t electrocute herself or set the house on fire. But these continual seizures were terrifying. So back to the emergency room we went. When we told the ER staff what the doctor had said, they were horrified. They said they would do whatever they could to get Mom admitted.

By this time it was close to midnight. The ER staff was wonderful and Mom had been given enough sedatives that she was in a calm, relaxed state, drifting in and out of sleep. My sister and I were wide awake, wondering what was going to happen next. What we didn’t know at the time was that the nurses and the ER resident had been working behind the scenes to get Mom admitted, but apparently Dr. Nasty hadn’t budged. Then at 2 a.m. a tall, commanding figure in green scrubs strode into the room and introduced himself. He examined Mom, speaking tenderly. Dr. X asked us a few questions, then he left. We didn’t know then, but Dr. X was the head of the medical complex’s emergency department. In the middle of the night he’d left his post at a different campus to see for himself why the ER team was so concerned about the situation with Mom.

A few moments after Dr. X left us, we could see him on the phone at the nurse’s station. The glass windows kept us from hearing anything, but we could see him gesturing wildly and stomping around. Shortly after this scene, one of the nurses came in. “We’re getting a bed ready for your mother. We’ll take her upstairs as soon as it’s ready. Why don’t you girls go home and get some rest.”

Cindy and I looked at the nurse with tears of gratitude. She continued, “We’ve all been terribly upset with the way the on-call doctor has treated your mother today. So we called Dr. X and he drove over here to settle the matter.” She leaned in conspiratorially, “He threatened to report her to the medical board.”

Mom stayed in the hospital for about a week, getting a battery of tests to determine the exact cause of her multiple seizures. The neurologist, a small man with gentle brown eyes explained, “Your mother’s Alzheimer’s has progressed to what we call ‘end-stage’,” he said. “Her brain is shrinking, and the shrinking is causing the seizures.”

“So this is not a passing issue?” It was a rhetorical question; I knew the answer.

“She will get worse and worse, probably eventually refusing to eat.” Our only option, then, was the nursing home.

A fairly new facility had a bed available. She’d stayed there twice before for “respite care” when I had to go out of town for a few days. We felt fortunate that they would take her, even though, after her Medicare had been used up, she’d be a Medicaid patient. Many of the most highly recommended nursing homes only took “private pays”; some of those who accepted a lot of Medicaid patients were less than top notch.

Something frightening happened when Mom moved into the nursing home. It was as if her essential being – whatever it was that made her “Mom”, had already died. If you could get her to look you in the eyes there was blankness. She was completely mute, and sat for hours in a wheelchair, folded in half, her chin on her knees. And, as predicted, she refused to eat. The only vocalization she did was at mealtime. The aides would put straps around her chest and pull her to a sitting position in the wheelchair. Then attempts at feeding would begin. Even ice cream, which had been her favorite food of all time, was met with frantic cries of “No, no, no, no, no!!!” If her hands weren’t strapped down, she’d claw at whomever was trying to feed her. Often that was I.

These were dark days. The doctor presented us with two options: insert a feeding tube, or bring in hospice care.

Hospice provides end-of-life palliative care, pain relief and other support to make both the patient and the family as comfortable as possible during the remaining days of the person’s time on earth.

A feeding tube would provide the nutrients that my mom’s body was sorely in need of, but because it was considered an “extraordinary measure” we couldn’t have both. If we chose the feeding tube, hospice would not take her.

For the first time, my sister and I were divided. Our Aunt Lottie, who’d also had Alzheimer’s, had been given a feeding tube and went on to live another two and a half years. I knew that’s what my sister was thinking when she voted for the feeding tube. But Aunt Lottie didn’t have any of the complicated medical challenges that Mom had.

I, on the other hand, wasn’t convinced that it was the right thing. Remembering what the neurologist had told us, I felt that we should begin to let Mom go, and have hospice there to help us through. Of course, we couldn’t ask Mom her opinion. Her blank stares gave no clue as to what might still be churning in her heart.

My sister was adamant, and even though I was not fully comfortable with the decision, I gave the okay. After all, miracles sometimes happened.

Mom was carted off to the hospital for the feeding tube insertion. Shortly after she came out of the anesthetic, she pulled the tube out. So the medical team decided that this time, they’d restrain her arms when she woke up, to give her time to get used to it. It broke my heart to see her tied to the sides of her bed, thrashing like a caged animal. Was this the quality of life that she wanted?

Sometime in the middle of the night, Mom managed to contort her body in such a way that she was able to reach the feeding tube, despite its being hidden under layers of Ace bandage, and dislodge it again.

Still, my sister wanted to give it another try. “This is the last time,” warned the doctor, “if she pulls it out again, we will not reinsert it. It’s too dangerous.” He explained that besides the danger of putting someone in her condition under anesthesia multiple times, the chance of contamination was greater every time they went back.

So for the third time, Mom went back to the hospital to have the feeding tube placed again. Maybe she was just worn out from trying, or maybe she just gave up, but for the first few days, she didn’t fight it. My sister was thrilled; I was relieved. Neither of us was happy about having her hands restrained. We tried to explain to her that the feeding tube was a good thing; it was providing nutrition; if she kept it in, she’d start feeling better. Her response was a passive, blank emptiness. And now, bedsores were beginning to be a problem. The medical team was anxious to get Mom moving around, which couldn’t happen if her hands were tied to the bed rails. So they freed her from her restraints. Within an hour, the bloody sheets near her middle told the tale: the feeding tube was history.

Now we were free to request hospice care. An intake counselor came that same day. She explained to us that hospice would use every available means to make Mom comfortable, but we needed to understand that this meant she was dying, really dying. Counselors were available to us, her family members, whenever we needed them. I asked, “I saw a woman on a rolling bed-like contraption. Can we get that for my mom?” The nursing home had steadfastly refused our request, explaining that Medicaid would not cover the cost.

“Sure,” they replied, and moments after we’d completed the paperwork, mom was moved into this bed-on-wheels. Almost immediately there was positive improvement. No longer folded in half in her wheelchair, mom could be wheeled around the nursing home in comfort. I was even able to wheel the bed outside to the gardens, so she could enjoy the flowers and get some fresh air.

Being supported by Delaware Hospice was as close to miraculous as we could have wished. No longer did requests for care get ignored by the floor director (whom I’d nicknamed Nurse Ratched), or worry that on days when one of her family couldn’t make it in, she’d be trapped in her room with no visitors. A nursing assistant from hospice was always available to her; the hospice chaplain visited daily, singing to her. I could call day or night and someone would be available to me. Because hospice was able to use a variety of pain meds to provide comfort to my mom (without the utterly stupid concern that I heard from the nursing home doc: “We don’t want to create addicts” as the excuse for not regularly dosing with morphine), she began to emerge from the blankness that had characterized her first few months.

Although she didn’t always recognize individual family members, she’d smile feebly now when we entered the room. We were able to feed her without the terrible battles when she’d been strapped into the wheelchair. Curled next to her on her bed one evening, I talked to her about dying. “Who are you going to see in heaven, Ma?”

She smiled beatifically and with a peaceful joy, began. “The Blessed Mother and Jesus,” she started.

“Anyone else?”

“Mother and pop … and Steve [her late husband].” She continued. “Agnes … I’ll see Agnes … and my brother John.” Her sister Agnes had died at 21; John had been gone some 20 years. A lovely contentedness filled her face; I stroked her hand. I was somewhat surprised that she could be so articulate. It was probably more than she’d spoken in the last months. I decided to see if she could move into short-term memory – this is what’s taken away by Alzheimer’s – she hadn’t called me by my name since we’d brought her to the nursing home.

“Mom, do you know who I am?” By this time, I’d accepted the fact that she hadn’t recognized me as her daughter for quite some time. I was no longer shaken, as I’d been a few years ago when she’d looked at me curiously and asked “Did I ever have children?”

This time, however, was different. “You’re Marilyn,” she said softly.

“And do you know who I am?”

“You’re my daughter.”

I’d never thought I’d hear that again. It was a cherished gift. I decided to push the envelope. My husband, Paul, was sitting quietly beside the bed. “Do you know who this is?” I asked, pointing.

“Oh, that’s Sparky” she replied, not skipping a beat, a hint of a twinkle in her eye. Sparky was one of our cats. One of the last tasks that Mom maintained before her rapid downhill descent was feeding the cats, who’d wait at her bedroom door each morning. A procession of three cats and one shuffling old lady headed into the kitchen, where she’d carefully select their favorite food and place each dish in its specifically designated spot. It had been at least a year since she’d remembered to carry out this ritual. The fact that she’d not only remembered who Sparky was, but could make a little joke, delighted me.

That evening would be the last time we’d ever really had anything close to a conversation.

After that it became a waiting game. I couldn’t believe she was still holding on. Diabetic necrosis was taking over her limbs – large black patches on her legs and arms. The rest of her was as fragile as a locust shell. Nearly transparent skin fell in ripples over her body. Her hazel eyes, long troubled with glaucoma, were discolored, the pupils mere pinpricks. She was rarely awake now. When she woke, we sometimes got her to sip some juice or Ensure.

When Paul’s dad died rather suddenly, I was worried about leaving town for the funeral; I couldn’t believe she would linger for even those few days. But when I returned, she was still there, at least what was left of her. I began bringing my work into the nursing home, but often I just stared at a blank page of my laptop, unable to come up with anything resembling the ad copy or video scripts whose deadlines loomed.

My sister Cindy, my sons and I took shifts. My nieces, still young teens, couldn’t bear to see their grandmother like this and hovered outside of the room. About midday on July 7, after Cindy and I had been in Mom’s room since early morning, my son Stephen came to relieve us. Cindy and I decided to slip out for some take-out. Returning to the nursing home, we ran into Debbie, who was the senior day care director. Before Mom came to the nursing home, we’d been taking her to the day care for several months. She adored Debbie. “Hey, Debbie!” We called out, “Nice to see you!” Cindy and I had been laughing and joking about something from our childhood. Debbie smiled warmly.

It wasn’t until replaying the scene later that I recalled the sadness in her eyes. “Good seeing you, too,” she said, grasping our hands.

When we got to Mom’s floor, it seemed eerily empty. Turning the corner to the long corridor that led to Mom’s room at the end, we noticed a cluster of staff in front of her door. But it wasn’t until we were about halfway down the corridor that we stopped our chatter and looked at each other. The staff didn’t have to tell us that Mom was gone. We entered the room and Stephen was kneeling beside Mom’s bed, his head resting on her arm. She looked more peaceful than she’d looked in years, the pain and anguish of her condition no longer keeping her captive.

The nursing home let us stay in the room for a few hours, as family members gathered. We told “Mom” stories, chuckling softly. Every now and then, Mom’s eyelids would pop open and one of us would walk over and lower them. We joked, “She just wants to be kept in the loop.” What may have seemed macabre to an outsider peeking in seemed perfectly normal to us. I am sorry, though, that when the nursing home shooed us out so they could prep her for the funeral parlor, that Cindy and I didn’t insist on staying and getting her ready ourselves. I guess by then we were simply drained.

Preparing for the funeral had moments of both joy and frustration. Frustration with the self-important funeral director and all the trumped-up state “requirements” for proper burial, requirements that would jack up the burial expenses to nearly $8,000. But once we crossed that unpleasant hurdle, preparing for the funeral itself was the joyful part.

Because I’d had a bad experience with the pastor of Mom’s church when planning Dad’s funeral (he wouldn’t let the soloist sing “Ave Maria” Dad’s favorite hymn, because it was “inappropriate for a funeral,” he refused to let us select the readings and put the kibosh on any eulogies), we decided to ask the priest at the Polish church, St. Hedwig’s, where Mom had gone through her whole childhood, if we could have the service there. Not only did he agree to it, he also gave us complete freedom in choosing the music, the readings and the prayers. Cindy and I decided to write our own version of “Prayers of the People” the offertory prayers in the Catholic church. Sitting on the back porch of the home in which we were lovingly and tenderly raised, we wrote these words. After each verse, we read “Let us pray to the Lord,” and the congregation responded “Lord, hear our prayer.”

“That all will remember the unconditional love and respect we received from Maguzhata, Margaret, Peggy, Aunt Peg, Aunt Peggy, Mom, Baczi.

“That God will bless Margaret’s loved ones.

“That all will enjoy the wonderful memories of their interactions with Margaret, large and small, no matter what the situation.

“That all will be inspired by Maragaret’s selflessness, patience, warmth, sweetness and generosity.

“That God will give us the same gifts of being with children in full delight, respect, focus, imagination and affection that Margaret gave to every child who entered her universe.

“That all Margaret’s grandchildren will remember the special hours they spent with the Baczi coloring, playing pizza shop with her jewelry, reading stories, playing endless games, playing with her magic button box, cooking, listening, rocking and singing, cuddling, wiping tears and fixing boo-boos all better.

“That God should bless all people with Margaret’s ability to make everyone feel special.

“That memories of Margaret’s delightful hospitality at countless holiday and family gatherings will inspire future generations to carry on her traditions.

“That we will all remember with affection Margaret’s enjoyment of her favorite foods, seafood – especially crabs – and ice cream.

“That Margaret’s memory will always bring a smile and bring strength in times of need.

“That all who knew Margaret knew that she most wanted to be with those she loved and that she strove to be the best sister, daughter, wife, mother, grandmother, aunt and friend that anyone could ask for.”

We had some other non-conventional tricks up our sleeves. At the gravesite service, together with my sons, we selected two pieces of music to be played, necessitating the lugging of a boom box across the cemetery. Cindy and I chose Bobby McFerrin’s amazing tribute to his mother, “The 23^rd Psalm,” and my sons Michael and Stephen picked one of Mom’s favorites by “that Marley fellah,” Bob Marley’s “Three Little Birds.” About half of the gravesite attendees were in their late 70s and 80s, so they were a bit taken aback as the boom box started up. But within moments, everyone – everyone including our most gruff uncle – was swaying in time to the music. As the music played, my nieces released a butterfly. Instead of flying off, the butterfly circled the assembled group a few times and flew over the casket before disappearing into the summer sky.

I had dragged myself — figuratively kicking and screaming – eight years earlier, moving into Mom’s house when it became apparent that she could no longer properly take care of herself. This meant dragging my husband and youngest son along on the journey. At the time, it felt like pure duty; I needed to spell my sister who’d cared for both my parents during my dad’s long struggle with asbestosis. Mom and I had been oil and water – she never really understood my career, my divorces, my hairstyle, my clothes … and for the first few years we battled over everything from her stubbornness to my pin-striped wool pantsuit (“too mannish!”). But as Alzheimer’s softened her edges and my women’s group provided an outlet for my complaints, our relationship changed. It bloomed in ways I’d never believed possible, and I can honestly say that, by the end of our years together, I’d truly fallen in love with my mother. The words Cindy and I wrote for the offertory rang true, and I consider myself blessed to have been given the opportunity to experience the sweet little old lady who was my Mom and grow from the experience.

© 2010 Marilyn Stevens