“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”
My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.
In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”
“That is not what I want,” said my husband, looking her in the eye.
“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”
So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.
“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.
“Do not call 911,” I said.
“We understand,” they said. “We love him too. But we have to call 911.”
The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.
“You may not take him out of this apartment,” said I.
It became an interesting battle.
“We understand,” they said. “We agree with you, ma’am. But we have protocols.”
Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”
One of the paramedics saluted my husband as he left the bedroom.
My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.
Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.
What’s wrong with this picture? Only the caption.
The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.
Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.
Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.
Sorry for your loss. His choice and it’s great you stood up for him. In the early stages of frontotemporal degeneration, my late husband signed a living will that essentially said “always pull out the stops” and health care POA with me as the primary POA and one of sisters as secondary POA. He was aware that he would continue to deteriorate but still wanted everything possible done. About two years, three months after that he became a private-pay long-term care resident. As long as it was possible (even as a long-term care resident), I took him to his family doctor, and our dentist and optometrist of many years. I visited him almost every day and was his fierce advocate. He had several hospital stays during his long-term care stay. During one of the longest and most serious ones (due to COVID-19), he wasn’t putting on weight and I faced some pressure to put him on hospice care. Instead of saying yes, I got his neurologist involved. The neurologist noticed that he hadn’t had some tests and he ordered them. Turned out my husband had a thyroid deficiency. About ten days after starting Synthroid he left the hospital. He lived another 13 months after that. I was disappointed that the hospital treated his as a “throwaway”. When he developed another condition that he really couldn’t have handled its treatment, I reluctantly agreed to hospice care, choosing a hospice where one of the priests associated with our church had a part-time position as a chaplain. When the time was right, the chaplain administered Last Rites. My husband was able to have a wonderful Requiem Eucharist. Family members traveled as far as 700 miles (in a frigid midwestern winter) to attend and two of his sisters and one of my sisters served as lector during the Requiem Eucharist. Wouldn’t have done anything differently.
Thanks so much for sharing this. I’m so glad you were able to advocate for your husband and to help him have the last days and years he chose. To me, it is 100% about choice. My husband only wished to die at home and I was immensely grateful that his decline and death were so fast. I only wish to die when I am no longer competent. I yearn for a day when all human beings can accept our common mortality and when personal choices are commonly made and honored. Grace and peace to you.
Fran,
You write a powerful tribute to Bud’s forward thinking and your own dogged insistence on respecting his wishes. It gives me marching orders-for myself, for my husband, my parents, my friends. Thank you for sharing your story. Much love.
Thanks, thanks! March on. Xo – Fran
Dear Fran…I am so very sorry for your loss. Though it has been several months now, know that you are in my thoughts.
Thanks, thanks!
Love and courage. Well done, Fran.
Oh Fran, this was so poetic and elegiac and right-on in so many ways. May I follow in yours and Bud’s wise and well-contemplated footsteps, and may I share the link to your piece with others?
Coffee soon?
Love, LL
Thanks, thanks! I’m more than happy to share anywhere. There is SO much work to be done before we get to at a sensible path to dying, and I want to believe it’s possible for many of us. Bud’s death leaves a large hole but was a blessing for us both. xoxo
Fran, Bud drinking only half of his martini was a clear sign. Disregarding a person’s clear wishes should never occur. Your courage to stand strong during a very emotional time is yet another testament of your love for Bud. I will miss having a martini and discussing art and life with Bud. I am a better person for knowing you both. We need to have a martini together soon. You are my hero on so many levels. Love you, Gib.
He so enjoyed time with you & Michael, EVEN if Michael (& I) weren’t sharing the martinis. We’ll have to preserve that custom. Hugs from the geezer house.
What a wonderful story. Unfortunately our paths only crossed 7 yrs ago so I didn’t get as much time with Bud as I’d have wished (but when do we ever, really?). But I did get to know him well enough to know that he was a remarkable individual: smart, deep thinker, compassionate, lover of fine music and art. Truly a man who lived life to the fullest and made a difference. Thankfully he met my dear sweet mother-in-law, because I think he met his equal in many regards. And that allowed him the most dignified, respectful and peaceful exit from this life. I hope your sweet daughter is able to do as well wen my time comes! 😉
God Bless you sweet Gran,
Love your number 1 son-in-law
Love you, #1 son-in-law.
Fran, I’ve thought often of the nightly martini ritual since Bud’s passing. So glad you included it in your story of a life lived to the end as Bud wanted it. May his memory be for a blessing.
Much love
Debra Kay
What a story! Once again, you have a story that others should hear so that they can make their, and their loved ones lives, a little better. Thanks for sharing!
Dear Fran, I have admired you for years for so many reasons and have enjoyed our collegial relationship in the SF End of Life Coalition. My deepest sympathy for the loss of the larger than life Bud Johns. Was thinking that he could have accomplished the goal of dying at home without the stress of calling 9-1-1 if he was on a local hospice program that could oversee his comfort care, and from a regulatory perspective, eliminate the faciliy’s requirement of calling 9-1-1. Hopefully that was the case an you have the option of bereavementbdupport for you and your family. Much love and concern for you. Rita Yakubik
Bless your heart, & your concerns! Bud’s decline was SO fast (yayy) and un-anticipated that we barely had time to get (Kaiser) hospice in place. But t’was fine: he had no pain, and in final hours I had hospital bed & plenty of morphine. We should all sign up for such a swift & pain-free exit. Which is exactly what hospice is about, and thank you for all those you have helped over the years. xoxoxo
Bless you, Fran Johns! So relieved to learn of Bud’s comfortable, pain-controlled, swift exit! Miss you. Take care of yourself, and by all means keep writing your wonderful stuff! Xoco
Grand way to enter heaven! Bud was no doubt welcomed and happy to arrive. May we all be so lucky.
Love you Fran, Doris
Dear Fran: Shirley and I are very sad to learn of Bud’s death. I recall with envy and admiration his hinged walls in the basement at your Sacramento home–and the wonderful art throughout. Great guy!
I shall share your Paramedics victory with the End of Life Group here at St. Paul’s Towers… Thanks for all you do! Love,
Farrel
Thanks, Farrel, & love & cheer to you and Shirley
Dearest Fran,
Thank you for sharing a personal moment for all of us to learn from. My condolences and my admiration for your advocacy.
Love,
Connie
Hi Fran. I can tell from the photo that your husband was a great guy.
All the best,
Neil Scheinin
Thanks, Neil. I periodically shared your blogs with him and I think it’s accurate to say he was a fan. Which is high praise. Peace & cheer to you.
Fran,
You have my deepest sympathy in the death of Bud. Jane Manning has told me such wonderful stories about him. I appreciate his kindness and love to her so very much. He was most thoughtful to share you with her. She valued the friendship of you both. I know that he loved art and that he shared his knowledge and appreciation of art with others. Please know
that you are in my thoughts and prayers during this difficult time in your life.
Love,
Jane Douglass Hyatt
A deep bow to Bud Johns and for you giving him the death he wanted. Thank you for writing this post. I will share it here in my retirement community and will continue to work as you do for end of life choices.
Thanks for that lovely comment. I suspect we’re ALL going to be working toward better end of life choices for a very long time.
This is a powerful story. You were a powerhouse of an advocate to ensure your husband’s wishes were honored. What a beautiful thing. Thanks for sharing, and may others be empowered by your experience.
KT
KATHRYN L. TUCKER, JD
Executive Director
End of Life Liberty Project
ellp@cascadianow.org
206-595-0097
https://www.cascadianow.org/end-of-life-liberty-project/
I love being appreciated by a REAL powerhouse of an advocate. Thanks. May we all keep at it.