Death: the most unlikely of happy endings or ‘Bossiest Eulogy Ever’

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Mom died on February 25th. Her funeral was in Utica, New York; yesterday was her memorial service. This is the eulogy I wrote and read yesterday.

Eulogy II

The first Tuesday after Mom’s funeral, I woke up and, because it has been part of my waking-up ritual for what seems like forever (even though it wasn’t) she was my first thought.

The picture that immediately popped into my head was her coffin newly lowered into her grave – a gorgeous, round-topped pine box the color of warm tea, black grain running through like tea leaves.

The feeling it evoked was a mixture of happiness, relief and serenity. Mom was okay. Mom was safe. She wasn’t confused, afraid or anxious. Her body wasn’t stiff and rigid because of a Parkinsonian freeze. She was beyond pain, beyond fear and I felt at peace.

This is not always how I feel about having a dead mother. The range of emotions I am experiencing on account of this loss are different than any of the others preceding it. Sadness. Relief. A little conflicted about the relief. Relaxed in a way I haven’t been in years. A little conflicted about that.

I am happy she got to see me finally marry the right guy, graduate from library school at 55, even if she slept through a good deal of the ceremony (lucky Mom, right?), share some of my life in Milwaukee and give me the most incredible gift of all – the absolute trust that I would have her back as she navigated the terrible and solitary torture of a slow, agonizing slide into helplessness and utter dependence.

For a woman who associated being dependent with being neglected, marginalized and abused – for valid reasons – this required an unprecedented leap of faith, on two fronts.

 

A little context – on two fronts

Mom’s upbringing, combined with the circumstances of my birth, had not laid the groundwork for dependence with dignity or mother/daughter compatibility.

She’d been a surprise.

Her parents were excited about another son to help with the planting, harvesting, milking and other farm chores. Instead, they got a fourth daughter. She was two weeks old when her sister Bessie suggested calling her ‘Arlene’ with an ‘I.’ (Her birth certificate reads “Baby Chernoff.”)

Mom grew up poor, Jewish, left-handed and unwanted on a farm during the Depression. A doctor told her parents, immigrants who hadn’t gone past sixth grade, that she shouldn’t be allowed to read outside of school because of her poor eyesight. The only toy she ever had was a doll her brother took apart. She once told me that when she really wanted to set her mother off, she’d walk around the house singing “Sometimes I feel like a Motherless Child.”

Her incredible tenacity in surviving her first year at Syracuse University with so little preparation for college life, eventually figuring it out (in part, after the dean in whose office she was crying told her to start doing the New York Times Crossword puzzle every Sunday) and going on to graduate and build a life in New York is remarkable.

 

A brief digression

I will now break from this eulogy to present a brief episode of “Irlene Chernoff: Life in New York.”

Scene: Girl’s night out. Syracuse Alumni Lois (tall) and Irlene (not so tall) enter the Waldorf Astoria Hotel to attend a talk by Eleanor Roosevelt.

They stroll across the lobby to the elevator and press the call button. The elevator arrives. They step in. The elevator is occupied by two women, one tall and one not-so tall.

The tall one is Eleanor Roosevelt.

The not-so tall one is Dorothy Parker.

Brief Silence. Furtive staring.

Lois: “Irlene. I never realized how short you are.”

Eleanor Roosevelt: “Good things come in small packages.”

Dorothy Parker: “So does poison.”

End Scene

 

Two-front context – continued

Then, a 50’s-era miracle happened. After having all but cemented her place in the family as the cool aunt and successful old maid career woman, Mom snagged the hottest bachelor in Utica. Being “Mrs. Rabbi Waldman,” in the words of my friend Debra, was her favorite job ever.

Here’s Mom, describing Dad in a letter turning down a job offer in New York in April 1958, because she’s getting married:

“…he is everything I ever dreamed of in a man. He is warm, sensitive, human, strong and the most understanding man I ever met; in addition to being liberal, of diversified interests and professionally a rabbi …”

By the time I came along, Mom’s older siblings had all reproduced. Used to being bossed around by the four elders, none known for being shy about their opinions, she was nervous in the way of any first-time mom. Unfortunately for both of us, I was born by emergency C-section two weeks after my due date, and because of Mom’s reaction to anaesthesia, by the time she was fully awake and ready to be the Best Mother Ever, I was a week old and had bonded with Dad.

Things were different 17 months later when Debby came along, and thus, the family rectangle (Amy/Dad, Debby/Mom) was established. It worked well until 1974, when Dad died.

A seismic shift

Until about 2005, Mom and I did not have the easiest relationship. Sometimes that happens with mothers and daughters, and if the daughter is lucky – which I was – she gets to a place where anger, sadness and resentment are replaced by gratitude for (in my case) the care she does give, and for a great husband and in-laws, supportive friends and the ability to have built different relationships with my own daughters.

One by-product of Parkinson’s disease was that – to paraphrase Mom – she stopped seeing everything she didn’t like about herself in me and started seeing me. Our subsequent relationship was deeper and more satisfying for its having happened long after I’d had enough therapy and done enough interior work to understand that parent-offspring compatibility is an add-on, rather than part of the standard package.

Nothing compares with what it feels like – after almost 50 years – to suddenly have a mother who goes out of her way to tell you you’re terrific and you feel it it so much that you could spend the rest of your life lying on your back and rolling around in it.

Even if that had never happened, and I was standing here, I’d still be grateful for everything Mom gave me, because once you know that nothing you do will please someone, it gives you the freedom to not worry about displeasing them.

Which, like the love you can roll around in, is also a gift.

And as the daughter who ended up being Mom’s Primary Person on her Grand Exit Tour of Planet Earth, it was my job to make sure she faced some unpleasant stuff in the service of making sure that her Grand Exit went the way she wanted.

Son of seismic shift –  the nursing home version

It would not be an overstatement to say that Mom’s Exit Plan did not involve a slow agonizing slide into helplessness in a Milwaukee nursing home. She had ordered up a serving of being “carried out of here feet-first,’ “here” being the condo she’d bought on Cape Cod in 1982.

I have vivid memories of visiting nursing homes with 50-something Mom. We’d walk into a facility and the smell – a melange of stale, damp and vague decay – would hit us. Near-comatose people with wispy hair and rheumy eyes sat in wheelchairs in the halls or rows in common rooms in front of a TV, some aware of us, some staring at nothing. On our walk back to the car, Mom would utter a variation on the same theme.

“If I’m ever like that, shoot me or give me pills.”

I didn’t shoot Mom, and I didn’t give her pills. But there were so many times, especially over the past two years, when I wondered why she was still alive. I went from being angry all the time to “she’s warm and I can hug her.”

And I came to rely on a group of people I had already grown to love and respect – the holy women (and occasional man) who cared for Mom and the rest of the people in the Helen Bader Unit with relentless devotion.

They helped Mom through these past brutal years, but they also helped Debby and me. It was a team effort in a game that ended with Mom’s death. And now that it’s over, I’m gonna tell you two things. First, we won. Second, we were able to because of three other things.

The most important – Thing One, if you will – was Mom. It was her decision to move into the nursing home. I’m not saying it was easy, and I’m not saying it was pretty. Debby was freaked out about her spending $10,000 a month on 24-hour care on top of rent for her assisted living apartment. I was slightly less freaked out but knew it wasn’t sustainable. That four months, though, gave Mom the time she needed to wrap her head around what she realized needed to happen. It was her idea to tour the Home; she chose Bader.

I have seen – and continue to see – new people coming in who didn’t choose. Some are angry, and what’s hard is made harder, both for them and for the staff who care for them. It is a stark contrast and a constant reminder of the remarkable courage my mother displayed in making her own decision to move to a memory care unit.

I also know that part of the reason she was able to make that courageous choice was because she knew – Thing Two – she could count on me. By then, we were far enough down the road that, given the choice to stay and help or have me do it, she jetted off to California to hang with her sisters, allowing me to set her room up in a way that it could serve multiple functions (seating and dining facilities for six) and favorite pieces from every room of her former home(s).

The “as happy as possible under the circumstances” ending

Bragging about your childrens’ achivements – the albums, the concerts, the book deals, the degrees, the awards, the jobs – that’s easy.

Entrusting your own well-being to their care is a whole different level of affirmation.

I did it as right as I could, and I think, for the most part, I got it pretty right. But I got it right because she helped me get it right. I got it right because she was honest enough and courageous enough to face her own death, and when she wasn’t, she borrowed my courage and my love for her and we got through it together. And when I wasn’t courageous enough to face her decline, I had spent enough time at the nursing home to be on a first-name basis with the people who were caring for Mom, and they helped me. That’s Thing Three.

If your mother lives in a nursing home, it’s a nursing home. But your mother lives there, so it’s also your mother’s house. When you come around more, your mother might not get more attention and more care than the people whose families don’t come around, but I know this – she gets better care. Because as good as those caregivers are, no one has time to rummage through your mom’s drawers and discover the several-sizes-too-small bra that belongs to the lady across the hall. Also, they are going to have your mom’s back like nobody’s business if you show up, because you’re going to see what they do and how to make your mom’s life and their lives as easy as possible, given the circumstances.

So this isn’t really as much a eulogy as it is a message, and kind of a directive from us. Mom’s death was beautful, and it was beautiful because I never stopped telling her, right up to the end, that this was her old age and eventual death and that she was in charge. And I never stopped believing it.

In truth, I started pushing her to talk about what she wanted and what we should do long before she was ready.

But because of – or maybe in spite of it – Mom and I were able to have all the hard conversations, and even find some light moments in the midst of them. We planned her funeral and this memorial service together, and the comfort of knowing what she wanted and being able to make it happen has brought me the kind of comfort that only a supportive mom can give.

Travels with Mom: a trip to the Neurologist

So, yesterday I took Mom to the neurologist.

She’s been having more of these spells where one minute she’s fine, and the next she’s crumpling up like a boneless doll. They’re not pretty. The nurse practitioner at the nursing home where she lives thought it might be the Parkinson’s disease progressing, so we moved her April neurology appointment to yesterday.

When I showed up – after a stop at our current favorite Thai restaurant for the fresh rolls and sushi she’d requested – she was waiting for me with her coat on, but instead of using her walker, she was sitting in a wheelchair.

“Where’s your walker?” I said.

She looked at me the way she does when she doesn’t want to say the wrong thing. It’s not a fun thing to see. The mother I used to have would have said what was on her mind without hesitation.

Photograph of blogger and her mom
A picture of Mom and me during our 2011 “From Massachusetts to Flyover Country” road trip.

“We always use the wheelchair when we take her off the unit now,” Jennifer said. She’s one of the nurses at the Home. She’s tiny, efficient and delightful. “We always use it for any distances, if she’s going to Temple or an activity off the floor.”

For the past month or so, we’ve mostly been hanging out in Mom’s room, so this was news, although it made sense. I was just trying to figure out where to leave the wheelchair when we got to the car, the logistics of getting one at the hospital where her appointment was, and then doing the whole thing on the trip back.

When Jennifer explained that it was a travel wheelchair that would fold and I could take it along, I felt better. So, off we set. I had to get her to a standing position when we got outside and help her fall, more or less, into the front seat. She has a disc that rotates – kind of like a lazy Susan for your butt – on the seat, so I was able to lift her legs and swing them into the car once she sat down. But she ends up sprawled into the passenger space, legs on the floor, her back not touching the backrest and her head kind of aimed at the ceiling. It looks as uncomfortable as Mom has assured me it feels. So then there’s the part where I direct her, (“Put your weight on your feet and push yourself back in the seat. You can do it, Mom. You can! …Good….good….you’ve got it…you’ve got it….yes!”)

Then I buckle her seat belt and get the walker (or in this case, wheelchair) into the car, and off we go. It used to be that I’d pick her up early and we’d go out for lunch. Picking up “to go” and eating at the hospital seemed like a smarter idea this time. But I was reconsidering even that. She seemed half asleep. Then she said something.

“What?” I asked.

“You know Lou,” she said. Lou is one of the women at the nursing home. Her granddaughter and Alex were playmates when they were small.

“What about her?” I said.

“Her parents were coming to pick her up and take her out today.”

Lou is 94. This was not good.

“Her kids, you mean,” I said.

“No,” Mom said. “Her parents.”

This went on for a couple of rounds. Mom is not usually this kind of dotty, so it took awhile to sink in that my mother didn’t think there was anything out of the ordinary about a 94-year-old woman’s parents driving to the nursing home to pick up their daughter who has dementia in order to drive her back to their house for a visit.

I did a bit more checking, and sure enough, Mom was totally cool with the whole 112-year-old parents thing. (That’s assuming they were 18 when Lou was born, of course, which they probably were not. They were probably older, probably closer to 118.) So I dropped the subject and thanked whatever deity there is out there that we were on our way to see the neurologist.

We got on the highway. I kept my eyes on the road, except when I was checking on Mom. Who did not look like she should be going anywhere, unless it was bed.

“Help me.”

The words came out in barely a whisper.

“What?”

“Help me.”

“What do you need me to do?”

“I don’t know.”

I didn’t know either. I was just glad we were on our way to a doctor. It took us about 15 minutes to go 10 miles. It took another 20 to go 1,000 feet from the hospital driveway turn-in to the drop-off point where we could ditch the car and enter the building.

Mom spent that time probably regretting having been such a good role model for road rage. Worry and hunger do not bring out my best self.  We had left a comfortable time cushion for getting to the appointment. But it was supposed to have been for lunch-eating purposes, not being cast in “Hospital Apron Traffic Jam, the Reality Show from Hell.”

Cut to: the exam room. I tried to get Mom to eat. She wouldn’t. I tried to get her to drink. She wouldn’t. I was hungry. I ate. I was thirsty. I drank. Dr. B came in. She asked Mom about her trip to Canada in June. I showed her photos and a video of Mom walking down the aisle at Alex & Tevie’s wedding.

She asked about what was going on. We told her. She read the contents of the envelope the nursing home had sent. She tested Mom’s strength. It was good. Then she took Mom’s blood pressure. It was low. She said that it was a simple fix, and would account for the weakness and the weirdness.

“If there’s no blood going to your brain,” she said, “You’re gonna be dopey.”

Dr. B said she would call the nurse practitioner at the Home and have a conversation about the blood pressure issues. She also told Mom that she needs to eat and drink, and asked us to come back in three months.

Mom looked a lot more alive than she had when we’d come in.

“That was good news,” she said. I agreed. I handed her the fresh roll she wouldn’t eat before.

I wheeled her to a place near the door but not outside, and went to get the car. When the valet parking guy said it would take about ½ hour to get the car, I told him I was going to take Mom for a coffee while we waited.

We chatted on our way down to the café, and when we got into the dining room, a work colleague was sitting at a table by herself. Melanie teaches nursing at the tech school where I work. She was visiting a friend at the hospital. We sat together. I introduced her to Mom, and we talked about the appointment, what had happened, about nursing homes, about getting older and exchanged a little work gossip. Mom was more animated than I’d seen her in ages. She even ate all of her sushi, which hardly ever happens.

Mom and Melanie
Mom, eating her last piece of California roll, because Melanie told her how happy she was seeing Mom enjoy it so much.

On the way back, I told her how upsetting it was to have someone ask for help and be in such visible distress and not know what to do to make it better. I asked her what she was experiencing in those moments, and what I could do.

“I don’t know,” she said.

We’ve talked previously about quality of life issues, and I asked her if she was getting to a point where that was starting to matter. She told me that mostly, it isn’t. We agreed that the best thing in the world would be to die peacefully in your sleep, either during a nap or during the night. We talked about what would happen if that didn’t happen, who would be with her, and how we would do things.

Then, we made plans to go see an exhibit at the Jewish Museum this weekend. When we got back to the her room, I showed her – with no small amount of trepidation – the post I wrote last week about my dad and breasts.

I watched her read it. It felt like it took as long as the hospital apron traffic jam had (it didn’t).

She liked it.