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Monday, April 10, 2023

MOLST

MOLST.

I'd never heard of it. 

MOLST.

Medical Orders for Life-Sustaining Treatment.

A few weeks ago, the call came from Long Island, where my friend Mary Beth was hospitalized. Her second hospitalization since February. She's been sick, very sick, for many years. Although I'm not local, I'm first on her list of healthcare proxies.

We are old friends, from college. So 50 year+ friends. She is one of the wittiest and more brilliant people I've ever known. She can also be a prima donna, high maintenance. But she always - whatever the circumstance - had the gift of making me laugh. Or, at minimum, smile.

I love her.

The call came from a case manager and a nurse. Deb, Mary Beth's second on the list, was also on the phone. Deb is local, and has been the one keeping an eye on Mary Beth.

More than an eye.

Mary Beth - like me a widow without children; unlike me, no close relatives around - has amazing friends/neighbors who live across the street.

When MB is in the hospital or a rehab facility - and she's been in and out of both for the past four years; pretty much ever since her husband died suddenly - it is Deb who visits most regularly, talks to the doctors and nurses. When MB is home, Deb manages the home health aides, who have been there 24/7 since last July. She does the grocery shopping. Runs errands. She pops over to see MB whenever she can.

I've told Deb that, if Mother Teresa and St. Francis of Assisi had a child, she'd be it. 

Deb is kindness personified.

Then there are Lori and Andrew. I can't even begin to get into everything that the two of them have done to help Mary Beth. Manage her finances, and all the other paperwork that comes along with just plain life. Take care of home repair and maintenance. Provide IT support. 

When MB was in her first major rehab stint, Lori and Andrew had MB's bathroom rehabbed, swapping out the tub for a walk in shower, getting a handicapped toilet put in. 

And lots of other stuff that I can't even begin to get into.

Plus, along with Deb, Lori is a regular visitor, and, along with Deb, make sure that holidays are observed, birthdays are celebrated.

It's this amazing trio who have enabled Mary Beth to stay in her home and out of a permanent facility. A nursing home.

MOLST.

Mary Beth was out of it. The hospital needed us to sign off on the MOLST.

MOLST is a DNR (Do Not Resuscitate) on steroids. It includes a DNR, but also whether the patient should be intubated, or have a feeding tube put in, if and when to use antibiotics. There there's the biggie: Treatment Guidelines. Deb and I checked with each other. We knew Mary Beth's wishes: comfort measures only. Return to the hospital only if pain control isn't working. 

We were signing our friend into hospice.

Home hospice. 

Home.

That's where she wanted to go. That's where she wanted to die.

So Mary Beth came home.

Without getting into the complexity of Mary Beth's health problems, she's had a cascade of them over the past two decades, many of them stemming from successful but ghastly treatment to cure her mesothelioma. Mesothelioma. 

The doctors at Sloan-Kettering once told her that, on the inside, she looked like an asbestos miner. 

Mary Beth had been a librarian. But she worked in some very old buildings, where the pipes in the basement were wrapped in asbestos. So, mesothelioma due to being a librarian.

At least that's the theory of the case.

Anyway, what with one thing and another, MB developed substantial mobility issues, alongside a raft of other problems. Things have gotten worse as time goes by, and all of a sudden she was a total mess, health-wise. She has been 100% bedridden since July.

Home hospice in Mary Beth's case meant not just a continuation of the 24/7 health aides, but also the addition of an overnight aide to help move her when the pain got too bad.

Sometimes when I called, she was too tired to talk.

Mary Beth had never in her life been too tired to talk.

Last Monday, I flew down to JFK, and Uber'd out to Long Island to visit her.

I hadn't seen MB since last August. She looked frail, but was 100% with it. 

I told here that, when she'd been out of it, I'd signed the MOLST. I asked whether she wanted to revisit it. She didn't. 

Our conversation was, as usual, free ranging: politics, families, movies, books, college memories. We talked about the royal family. She's team Will-Kate; I'm strictly Harry-Meghan.

One thing we have in common is that, although we both come from staunchly Catholic families and spent 16 years in Catholic schools, we're atheists.

I told her it was pretty ironic that she ended up in a Catholic hospice. 

Her response: good thing she wasn't going to need an abortion. 

Deb, Lori, and I had dinner. We talked - of course - MB. 

That afternoon, the hospice nurse stopped in and he told me that, while you really can't predict these things, Mary Beth's vitals were strong, and she was obviously still 100% with it. This would be the best she'd ever be, but she could linger awhile. 

That afternoon, Mary Beth started on morphine for her pain. 

On Tuesday, MB told me she'd been craving a corn muffin, so I walked over the nearby Stop & Shop and got her one - plus an extra for the next day. I made it just the way she likes it: cut in half, buttered, stabbed through in a few places so the butter could melt in, heated up. She picked up and licked every last crumb off her fingers.

We watched the arraignment. 

She told me that she wanted to die in her sleep.

I told her I'd be back down in a few weeks, and would bring her some homemade corn muffins.

I told a picture and texted it off to our friend Joyce, who lives in Dallas. 

I gave MB the proxy hug and kiss that Joyce sent her way. I gave her a hug and a kiss of my own. As we always ended our phone conversations, we both said "I love you."

On Friday, Deb called to let me know that the health aide had called to say that she thought Mary Beth had died. Deb sped over from work. Lori sped over from work. MB's body was still warm, but they couldn't detect any pulse, or any breathing. They called hospice to come and declare. Then they called the funeral home for the removal. 

Once MB had gone into hospice, I'd been in touch with the funeral home about the arrangements: cremation now, we'll do a celebration of her life later, hopefully when her brother Bill (whose been having his own health issues) and his wife can come up from NJ). 

While they all waited for the funeral folks to arrive, I spoke with Deb, Lori, and Andrew. We were all a bit crazy. After all this time, Mary Beth's death had come so fast...

I called Joyce, and we shared a little phone cry. 

On Saturday, I got my signature on the request for cremation form notarized and overnighted it off to the funeral home. I emailed MB's lawyer to let her know the news, and ask her what the next steps are. I'm the executor. (Last year, Mary Beth told me that she needed to redo her will. I found a lawyer and helped MB get her thoughts organized, etc. When we met - phone meeting - with the lawyer, she asked MB who the executor would be. Mary Beth told them me. So I guess I was...)

Yesterday, I thought about Mary Beth and our long friendship. 

She's the second 50-year friend I've lost. The first was my beloved high school friend Marie, who died a couple of months after my husband did in 2014. This is one of the main downsides of aging...

Mary Beth's life has been pretty miserable for the last few years. She may not be in a better place - remember, we're atheists - but she is no longer in pain. So there's that.

Still, I'm sad. Very sad. 

As we learned in Girl Scouts, "Make new friends, but keep the old. One is silver and the other gold." 

True, true, true...

Goodbye, my golden friend.

Hope I'm not called upon to fill in another MOLST anytime soon.

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