Mom's Off Hospice & I'm Too Crazy For My Pants

I don't recognize stress; the psychiatric group rejection that triggered that headline

I had a revocable trust created so if I die first, Mom’s care continues uninterrupted. Originally, I treated it like a joke, because it’s ridiculous, right? Maybe not.

They’re taking Mom off hospice

—for the second time. Six years ago last July, doctor’s predicted she wouldn’t last the year. If nature didn’t do it, she’d made her own plans with a scheduled her expiration date two weeks after moving in with me. She’s had Covid. Pneumonia. There were six cancers before she even got here and when she got here she had a broken back. None of it made a dent.

So, here she is, getting kicked off hospice again because she is declining, but at the same rate the tectonic plates shift¹.

in. crem. mental.
Stress on the mental.
She is

• eating less, but not losing any weight

• frequently & surprisingly more coherent with us, but refuses to stand anymore

• completely coherent when she talks to her pillow

• completely odorless

• starting to follow simple commands and respond appropriately in full sentences, again

  

  “Smile, Ma!” And she did. That hasn’t happened in months.

I’m 67. She’s been with me for six years, five more than we’d counted on.
She’s 94, healthy, strong and a total fruitcake.

My dream of traveling cross country in a converted van may well end up as me in an electric wheelchair rolling full speed down a hill from the old age home where we both wind up living.

Self-care

I would like to outlive my mother. As she gets less care, I need more.

A few weeks ago, I went back into therapy because I’ve been doing the secret eating and pushing for the retail therapy dopamine rush. New therapist recommended trying EMDR. I’m game, but I’ll need a faster fix for the eating, because the weight is creeping back, along with a healthy dose of self-loathing and self-doubt.

Someone suggested nicotine gum, quitting smoking was harder than putting down the drink and the drugs. I don’t want any of that back in my body.

I met with a new primary care physician, because my previous one moved. I’m not crazy about new PCP, but I wasn’t crazy about previous PCP.

New PCP prescribed megadoses of metformin for the eating, with the caveat that it might result in mega episodes of diarrhea. She also suggested getting my meds adjusted, to deal with this latest iteration of my stress coping mechanisms, the secret eating.

Finding a psychiatrist that accepts Medicare is by definition, stressful. When I finally found a clinic for a telehealth visit, they asked me to elaborate on my past substance use. I listed everything I could remember, because I’m sober now, and honest, and no longer gaming medical professionals, a talent innate to so many addicts, then honed to the level of master craftsman.

But, not doing that now, so, after repeating that I’ve been clean and sober for over 34 years, I submitted the list:

• Alcohol: age 13-33, daily from age 21-33

• Pot: Intermittently from 16-25

• Cocaine: 20-33

• Heroin IV and/or snorting: 25-33

• Psychedelics: Intermittently from 15-28 (approx)

• Angeldust: Once or twice only in my early 20s. late teens

• Barbiturates: 15-17 (Nembutal, Tuinal, Seconal)

• Amphetamine: Black beauties and white crosses when available 25-33

• Crank/Crystal Meth: 24-27 (it was not like today's crystal meth at all)

• Quaaludes/Mandrax: Occasionally 20-26

• Valium: Up to 50 mgs/day in my 20s

To which, said facility replied: After reviewing the information provided and evaluating your specific medical requirements, our providers feel that your current medical needs surpass the resources and specialized care our facility can provide.

The facility’s name?
(Something) Psychiatric Group
I was rejected by a psychiatric group when I asked for help dealing with the anxiety and stress of being a caregiver.

Translation: I’m Too Crazy for my Pants, sung to the tune of I’m Too Sexy for my Shirt.

🩵

Food is Love

Question: Is it still a coping mechanism if it doesn’t actually help you cope? Asking for a friend.

When I say secret eating, I don’t mean eating in a closet, or with the lights off. I’m talking about eating on the lam. From here to there. Walking alone on my way to the gym, or home from there, or anywhere, before I get to where I’m going where there might be someone who would see me eating.

I went off Ozempic in March, and while I don’t think it did much, I used it for 18 months and along with Weight Watchers, giving up my car, joining the Y, Zumba, swimming, and walking five miles a day, I lost 60 pounds.

My insurance changed & Medicare doesn’t cover Ozempic.
And even if it did, I’d lost so much weight, I no longer qualified.

I don’t believe it helped—I’d only lost four pounds in four months before I added Weight Watchers, but…

Yeah, but. But word on the street is all the weight comes rushing back when you go off, and those stories are in my head. My head is a very powerful place, it manifests stuff. In, a kind of reverse placebo effect, I started eating again. Secret eating.

Look, eating is a coping mechanism.
Food is love if you’re Jewish. Or Italian. Or weren’t raised by wolves.

Stress Markers & Maladaptive Coping Strategies

When the cure is worse than the disease

I never know I’m stressed until a behavior or somatic symptom² crops up, which I run into the ground, then an aha! moment pushes that particular coping strategy off my radar and some other thing takes its place. Over the years there have been:

• Hives from head to toe, including my scalp and eyelids cracking like a desert floor, after I was raped. Again, years later when I wrote about it. Again, several times during this caretaking journey. Sometimes, a single hive will pop up to let me know I’m stressed, because I struggle knowing how I’m feeling inside, until it comes out somehow.

• Eating disorder(s) are about controlling the chaos for me

  • when I was drinking, for months, possibly years, I had a limited diet: three Stoned Wheat Thin crackers with two slices of Kraft American cheese, three times a day

  • in early sobriety, I stopped being able to swallow solid food and I lived on ice cream and soup for weeks, followed by

  • weeks of secretly eating only twenty-five cent bags of cheese doodles with three Goldenbergs Peanut Chews, while contemplating which method of suicide would be most effective:

    • drinking Drano

    • shooting bleach, or

    • jumping off the roof

• Driving fast(er than my anxiety)

  • Crashing a car, forcing me to slow down

• Itches that only a dry, stiff-bristled brush could relieve, tearing the skin off my palms

• Accidentally hurting myself from inattention, because being present might mean confronting a feeling, and hurting myself forces me to slow down and pay attention. There was my

  • left wrist, broken in seven places

  • right wrist broken in three places

  • right wrist broken again, in two places and a dislocation

  • currently nursing bruised, possibly cracked ribs due to the most recent fall. Afraid of breaking my wrists again, I automatically throw both my hands up in the air and back, so my rib cage broke my fall. Ribs are not designed to do that, btdubs.

• Severe ulcerative colitis triggered by stress and/or one of several car accidents³, forced me to be hospitalized twice and transfused once

• Drinking excessively helped for many years, but stopped working in the late 80s, and I gave it up in 1990

• Drugging excessively was also a panacea, until they stopped working in the late 80s and I gave them up in 1990, too

• Sleeping around excessively kept some of the anxiety at bay, but didn’t work all that well, and really, it’s too much effort to even try at this point in my life

What’s Next? I Don’t Know

I have a gold Star of David inscribed, in tiny letters, expect miracles. I do. As a Jew, it’s part of my cultural heritage. We not only expect, we rely on them.

🩵

I want to wrap this all up with a nice little ribbon.

FACT: Having regressed to a pseudo-infancy where she is fed pureed foods, wearing a diaper and speaking gibberish, Mom’s now heading in the other direction with full sentences that are both appropriate and coherent. She seems more present, more relaxed. Or maybe I’m just seeing what I want to see.

I want to be able to come back to you and say that she’s breaking ground in the field of dementia research.

I want to come back in a few weeks and tell you her recovery progress continued and she is a medical miracle, eventually putting her teeth back in, remembering to swallow, eating solid food, and flirting with men we can all actually see rather than the invisible ones.

I want medical journals to interview us after she’s made a full recovery, and even though there’s no record of anything even remotely like that ever happening, I wasn’t supposed to recover from Hepatitis C without treatment, but I did; she’s not supposed to be coherent with the invisible people, but not with us, yet she is.

I have an appointment today with a psychiatrist that takes my insurance. A Medicare miracle.

That’s a start. Expect miracles.

1. The same rate as your fingernails grow, imperceptibly.

2. Hives, inability to swallow solid food, colitis, herpes flares and the itching were all somatic symptoms, my body trying to tell me what my mind couldn’t see. I was stressed.

3. I hit the Brooklyn Bridge while I was on it, as EMS was getting me out of the crash and away from the car, I called the friend I was meeting for breakfast and changed the location to somewhere convenient to where I’d crashed, never mentioning the accident. Because that’s not stressful at all.

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