Enjoy Life’s Journey

“There are no happy endings.

Endings are the saddest part,

So just give me a happy middle

And a very happy start.”

-Shel Silverstein, Every Thing On It

Today is National Poetry Day. I wrote poetry in high school a 100 years ago. Who didn’t? It was the 1960s and 70’s. Peace & Love and Woodstock. Like, Far Out, Man!

Shel Silverstein has always been one of my favorite quirky poets. How a man who looked scarier than the boogeyman himself could write such poignant simple words in the right sequence seemed like something unique to me. Now, I look back at his prose and read a whole different level of authenticity and relevance, no matter how simplified his words appear. His goofy graphics make me laugh. The above piece by Silverstein resonates on a platform I never would have guessed would apply, word for word, to any part of my life. Then, on one ordinary day, everything changed with the snap of a finger or in the blink of an eye.

When the best medical professionals in the state tell you to make arrangements because your spouse will not survive the next 24-48 hours without artificial help, you believe. That was weeks into hospitalization and not something you would think they would guess on. Hunter and I lived for weeks on the critical care floor at St Vincent’s and overnights at the special housing hotel for a family of patients. We saw others that didn’t come out of that critical unit alive. Shift and staff changes were every Monday, and we witnessed many. We knew when you were called to the “room”, it would not be good news. Through hours and hours of observations for weeks, we knew what room was the “room”. Right before Labor Day in 2022, Don’s doctor for that current week called us to the “room”.

It felt like a walk to the gallows. Jacob, Hunter, Julie and I gathered in a small and quiet room where even I could hear a pin drop. After hearing the words respiratory failure, it was a joint decision with the doctor to remove all life support because Don would not want to live like an invalid with a respirator and feeding tubes. Everyone agreed Don, in his right mind, never wanted to be a burden on anyone. Julie fought hard to challenge the doctor’s assessment, to no avail. We were told death was imminent. Three days after last goodbyes and arrangements were made with a funeral home, a phone call from the same doctor changed everything. Or did it?

You don’t just come back from something like that with one phone call, and the man they sent home with me months later is not the person who went in by life flight. Not even close. I don’t know if it was jet fuel, brain surgery, pneumonia, crippling after effects of a massive stroke, lack of alcohol or a mistaken identity in the exit interview at rehab, but I’m pretty sure I came home with the wrong person. Don keeps asking me who I am?

I’ve talked to dozens of people about elder care, dementia & Alzheimers. Everyone has a family story somewhere in their family lineage. Some people were more involved than others in the care factor. Their wealth of information has been very helpful, but it doesn’t change the reality that there’s a man living in my home that may or may not be someone who should be living in a private home. Everyone agrees the journey was harder than expected for the person left with the major responsibility for at-home care of a spouse, partner, family member, or friend who became the equivalent of someone less than 8 years old. Many are equal to a 3-year-old child. Financing anything else is prohibitive. I already provide housing, food, and transportation for Don and there is a doctor nearby whom he can visit regularly. We can manage his prescriptions online. What I cannot provide is 24/7 supervision. Sleep for the caregiver is just as fleeting as it was when there was a newborn in the house. Is it worth paying certified caregivers $30/hour for a minimum of 8 hours per night for all 30 days in a month when all they will do is basically nothing while you sleep? I think $7,200 per month minimum for being available on a graveyard shift, in the event services are needed, is not sustainable for the average senior citizen.

The stab in the back comes when all your medical coverages will no longer cover long-term or memory care. The following tidbit of information popped up from research on Google. “Aging adults without money to support them through the rest of their lives can stay in a nursing home for up to 100 days. Medicare and supplemental coverage will cover this brief period. Seniors who reside in an assisted living facility and run out of funds will be evicted.” How is a brain damaged, partially paralyzed senior citizen with huge memory lapses supposed to acquire more funds for healthcare purposes?

Note to Self: Indeed, there are no happy endings on earth.

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