Bring Out Your Dead: But, I'm Not Dead Yet

Like some commitment-phobic geriatric groupie, she waits at Death's backstage door, but runs away the minute the Reaper opens the door. Mom is 3 & 0 in this weird game of Catch Me if you Can.

Dearest Reader’s Eyeballs & Hearts—that’s you, reading this,

A week ago, I was rushing through calls with social workers, scrounging around the internet researching hospice facilities, considering 24-hour home care, wondering about time—how much we had, if it was the right time.

No. I was sure it was the right time.

I got so much support from folks I know personally, others I’ve never met IRL but feel like I know, and a few who chose this time to reach out and share their hearts and shoulders. Phone calls. Emails. Direct messages. Hugs. You shared your stories with me privately, understandable as most folks aren’t inclined to lay their most difficult decisions or most confusing moments out on the sidewalk for everyone to see. That’s why confession and therapy are set up the way they are, one-on-one.

Well, I hated therapy & I’m too Jewish for confession; this how I understand myself & my world. How I process my feelings & find my people. I lay my shit out on the sidewalk for the world to see.

I’m Not Dead, Yet…

Thank you. All of youse.
And now I’m embarrassed and I feel like I owe all y’all an apology.

Maybe she heard us talking. Maybe it's just what she does because it’s not the first time she’s done it, coming back from the (almost) dead.

Cancer, six times.
She’s already lived thirty years longer than any of her aunts or uncles and twenty years longer than her only brother.
She had Covid. This is the second time she’s been on hospice.
It’s the third time I’ve braced myself for a final goodbye.

1. When she slept for two weeks, almost straight through.

2. That Christmas 2023 pneumonia that was sure to take her by New Years.

3. And this—the collapsing, sleeping, not eating.

But, she’s back.

A life-long walking talking thinspiration poster child, she’s eating even less. A cupt and a half of fortified soup & a cup of pureed fruit over the course of a day. Some Boost and Ensure.

She’s back.

Smiling. Being a pain the ass. Calling out “Help” and reaching for strangers on the street, grabbing for joggers as they run by “What’s your name, where’s he going?,” yelling at dogs and ambulances to “Shut Up!” Throwing a nerf ball back & forth, knocking things off the kitchen table. Dragging her wheelchair down the galley kitchen, shopping off my counters. Trying to tear open stuffed animals that don’t open. Dismissing an aide with “Well, fuck you” when she’s not getting the attention she thinks she should. Admiring flowers when before she saw only hedges. Talking to (non-barking) dogs. Stealing (our) cell phones. Enjoying the warmth of a blanket. Refusing to get off the commode. Clutching a football-sized blue glitter rubber duck in the shower. Drinking from a glass on her own. Walking to the bathroom. Singing nonsense words to herself. Occasionally using coherent phrases. And thank you sweet Cheezus on a cracker, sleeping through the night for the first time in I can’t even remember when.

There are drugs in my refrigerator that I love

Sunday, she was already a little better and I was able to leave her with a new aide and get my bad ass monkey mind to a 12-step group I’d been part of for 27 years. I talked about being an emotional yo-yo. And told them about what’s in the bottom right crisper drawer of my refrigerator—morphine and lorazepam (which is a benzo).

I love opiates.
I love benzos.

I mean I did, when I did those things. I had prescriptions for 50 mg of Valium a day¹ and held down a full-time job. And drank. Heavily. And sometimes, it was lovely. Because, sometimes, it is lovely not to feel your feelings. I would have happily bathed in opiates and benzos.

I feel the same way about peanut butter & jelly sammichs. I could eat them every day. When you play the “Death Row Last Meal” game, mine is always peanut butter & jelly. Maybe for you, it’s mac & cheese, or you may have more sophisticated tastes. But, I loved benzodiazepines, barbiturates, opiates and opiate derivatives the same way I still love a pb&j.

I haven’t done any recreational drugs² in 34 years, but I’m going to assume I’d still love them, the same way if I was denied peanut butter and jelly for 34 years, I know I’d still have a taste for it.

Addicts in recovery, generally speaking, shouldn’t have their favorite drugs so easily accessible, but those drugs are part of end of life care. They come in a box marked: Comfort Pack.

Given to her, as needed, they ease any pain or anxiety the comes with the end of her life.

Reminder to self

Given to me, they’re not needed and they don’t ease pain or anxiety about the end of my life—they are the end of my life.³

Hospice requirements

To be considered a candidate for hospice, patients with dementia must show all of a list of characteristics⁴:

She checks some of the boxes

1. ✅ Unable to ambulate without assistance.

2. ✅ Unable to dress without assistance.

3. ✅ Unable to bathe without assistance.

4. ✅ Recurring fecal and urinary incontinence

Then there’s the deal breaker—you have to hit stage seven or beyond on the Functional Assessment Staging Scale (FAST). Stage seven is when a patient’s ability to speak is limited to no more than a half a dozen intelligible different words. Mom can still chat. Sometimes they’re recognizable words, sometimes not, but there’re definitely more than six. And there are days she talks all day. All. Day.

Boxes she doesn’t check

1. No meaningful verbal communication, or ability to speak is limited to six or fewer intelligible words.

2. Aspiration pneumonia

3. Bacterial kidney infection or other upper urinary tract infection

4. Septicemia

5. Bed sores, stages 3-4 (do not Google images)

6. Recurrent fever, resistant to antibiotics

7. Inability to maintain sufficient fluid and caloric intake, with a 10% weight loss.

She has too many words. She hasn’t been sick enough. She doesn’t shit herself often enough. We take good care of her, ergo, there are no bedsores. She’s near the end of stage 6.

Last week, I talked with the home hospice staff about moving mom into a hospice facility, because we were close to the end. With all the collapsing, it had become to dangerous for me to care for her at home.

This week, when the hospice nurse came, we talked about how I go about getting a hospital bed and air mattress and so forth if/when they discharge her.

No one gets out alive, but…

I’m 67. This has really only been this intense for the last six years. Bracing myself for her pending death. Finding, interviewing, and training new aides. Learning more about the disease and the health care & death industries.

For 61 years I did whatever I wanted to do. By which I mean, I was a dumptruck fire the first thirty-three years; sobered up and grew into myself in these last thirty-four.

In the big scheme of things, six years is nothing. Just more learning, more growing. What the recovery community refers to as a living amends (for those thirty-three years she had to go through with me). Also, more goodbye time together.

1. Which required juggling more than one unscrupulous doctor and while not actually lying, not actually telling the whole truth either.

2. You can generally assume there’s a drug problem when someone calls heroin and morphine recreational.

3. Feel free to remind me of that at any time. I will not take offense.

4. Taken from Hennepin Healthcare

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actual recent photo of the author