Watching My Husband Die – by Georgia Hurst

Whoa, you might be thinking. This is a heavy topic for a blog post. Perhaps too heavy for some of you, and it’s okay if this is the case for you.

In this space, however, we will continue to talk about hard things. Always. And sometimes, this includes using the “D” words.

You might want to read: What If We Started Saying the “D” Words Out Loud?

Watching a loved one’s health spiral downward is one of the hardest things you can experience. I wrote about that extensively in my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person. When the person dying is your spouse/partner; well, I’ll let Georgia speak about that.

If you choose to keep reading Georgia’s amazing piece, thank you. It’s an honor to share it. Be sure to leave her a comment or ask her a question at the end.

After all, we need to talk about the hard things and support one another when we do.

Watching My Husband Die

By Georgia Hurst

“If you don’t know how to die, don’t worry; Nature will tell you what to do on the spot, fully and adequately. She will do this job perfectly for you; don’t bother your head about it.” – Montaigne

I have been dealing with my mortality for the past 12 years — since I was diagnosed with Lynch syndrome. I struggled with it initially because several family members have died young and have left young children behind.

My son was young when I was diagnosed, and the thought of leaving him motherless to Lynch mortified me, but it also became fuel to make me a better mother, teach him as much as I could, and share all kinds of wonderful experiences with him. It has magnified each precious moment I have spent with him. As a result, we have a great, unique close relationship.

My brother died at 36 from colorectal cancer and left behind a beautiful eight-month-old baby girl. I have surpassed the age of his death by several years and have had the privilege of raising my son to adulthood.

I have been given many opportunities he wasn’t granted — every day I have lived past his 36 years, I have deemed it a bonus. His death has become a metric for how I have lived and raised my son. I make a concerted effort to love hard and not take things or people for granted. 

A year and a half ago, my husband John entered hospice. John was diagnosed with COPD several years ago after spending most of his life smoking. Over the past few years, his COPD worsened and would require frequent extended stays at the hospital. His condition deteriorated in the summer of 2021, and the exacerbations would increase within shorter periods between episodes. 

John’s last hospital stay was in October and lasted over a week. He told me he did not want to stay in the hospital anymore, and he wanted to see if we could manage his COPD exacerbations at home, and that is when we discussed hospice with his doctors. Doctors thought that perhaps he had another 6-12 months left, so that hospice would be appropriate. My gut told me otherwise — with COVID and winter approaching, I did not think he would live to see 2022. 

Watching someone you love decline from a terminal illness is infinitely overwhelming — it is exhausting and brutal — physically and mentally.

Watching John confront his mortality was distressing and saddening to me; he struggled to breathe and could not accept his fate. 

Watching my husband die was traumatizing for my son and me — it also made me think about how and if I would want to die if I were afflicted with terminal cancer or other illness.

My husband’s final week with us was during Thanksgiving break — just before Omicron would spread like wildfire. He could not get out of bed on Monday. John had had his final last exacerbation precisely five weeks after his previous one.

When the hospice nurse came to check on him that day, she said he would not last much longer — maybe 48 hours. 

We tried to create a peaceful and loving space for John, and John’s favorite music filled the apartment. We had his hospice bed placed in the beautiful Christmas-decorated living room and informed our family and friends of the situation. Their support was overwhelming. Many brought food and drink; others shared their fondest memories of John with him. We laughed, we cried, but I could see that John was happy and comfortable. He was surrounded by his favorite music, his beloved books, and all those he loved and loved him, either in person or through FaceTime. 

All of this during the pandemic.  

We tried hard to make the best of the situation. I tried hard to focus on the positive and remind myself that John was with his family during his final moments. I could not help but think of the hundreds of thousands of people who died alone during the pandemic, and I thought of their families and the sorrow and helplessness they must have felt being unable to be at their loved one’s side during their last breath.

As unsavory as the situation was, it was a gift. 

Caring for the dying at home is not easy. Those in hospice must frequently be changed and cleaned, turned to a different position to prevent bedsores, and given medicine around the clock for pain and anxiety relief. Physical changes may occur, and certain sounds due to a failing body can be disturbing and traumatizing — such as the death rattle. 

Providing around-the-clock care for the dying becomes an Olympic feat. 

But hospice at home can be a gift for all involved. While it was a tremendously sad time, I witnessed some of my life’s most beautiful, poignant moments. John spent much love and time on our son over the years, and it came back to him tenfold while he was dying. Our son tended to John by carrying him to the bathroom, bathing him, sleeping next to him, feeding him, serenading him with his guitar, reading to him, and just constantly being with him.

I have never witnessed such love, compassion, and kindness before — it was overwhelmingly beautiful. Our son morphed from a teenager into a gentleman before our very eyes. 

All those years of voracious reading and doing the daily NYTimes Crossword puzzle impacted John’s final moments. Although his body was failing, his mind was still as sharp as a tack as he lay dying. Those 48 hours the hospice nurse gave him came and went. Not even obscene quantities of morphine and Ativan could keep him from calling people, responding to emails, FaceTiming with his family abroad, and telling jokes. He smiled and loved seeing everyone around him. He was home, basking in the love and warmth which surrounded him.

John passed away on November 27, 2021, at 10:40 PM. 

Caring for John during his final days made me think about how to spend the rest of my life and how I would want to exit this magnificent world in his situation. It would be optimal to go quickly, preferably in my sleep, but if that is not in my cards, I hope to receive the care, love, and compassion we provided for him. I hope not to be a burden for too long, but I want to be besieged by all those I love, my music, plants, and books that bring me joy, and have my son and other loved ones by me while I take my final breaths.

Suppose you or someone is considering hospice and interested in learning more about the dying process — in that case, I highly recommend the book:  Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying by Sallie Tisdale. 

Live and love a little harder.

BIO: Georgia Hurst is a fierce patient advocate for those with Lynch syndrome and other hereditary cancer syndromes. Her advocacy work allows her to write for medical journals, various websites, books and genetic testing companies, and collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter.

Georgia has written two other pieces for Nancy’s Point:

Lynch Syndrome Awareness Day – 10 things I want you to know

I Am a Previvor with Lynch Syndrome

NOTE: June is Men’s Health Month — a good time to encourage the men in your life to make those annual check-up appointments, talk about health concerns, and implement healthy choices.

Have you experienced the death of spouse/partner, or do you know someone who has?

Have you been a caregiver for someone in hospice?

Do you have comment or question for Georgia?

A NOTE FROM NANCY: Order my new book EMERGING HERE. I wrote it to help others emerging from life-altering challenges — including loss of a loved one and the pandemic. Because your hard matters too. Besides Amazon, EMERGING is also available at most online booksellers such as: BAM, IndieBound, Bookshop.org, Barnes & Noble, and others.