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Partners
- Bernice Nel and her husband Deon were married for over four decades.
- For more than seventeen of those years, he battled a terminal illness.
- Bernice stood by him, took care of him and saw his brave daily fight to live until he died.
- Though tough, she says she wouldn't trade the beautiful years of her marriage for anything. It ultimately helped her find her life's purpose.
When reciting wedding vows, it's easy not to give much consideration to the "in sickness and in health" part. Who really wants to think about that on such a happy day? But for Bernice Nel and her husband Deon, these vows were put to the test, and Bernice passed them with flying colours.
“Deon and I met on a blind date back in 1980. We married and worked in our small business, building it up together, ” Bernice says.
Deon was an outdoor person who coached school soccer and loved watersports and quad bike riding. But their lives changed in 2004 when Deon underwent a routine dental procedure.
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“He presented with symptoms after a visit to the dentist. Deon was later diagnosed with amyotrophic lateral sclerosis, which is the most common type of MND. He was 45 at the time. The doctor’s prognosis was six months to three years as this is the most progressive type of ALS MND,” Bernice shares.
Deon had been mechanically ventilated and fed through a peg tube since 2008, and during that time, Bernice never left his side.
“Our two sons have been amazing and stood by our side throughout this journey. The ALS MND journey is not an easy one, and yes, it does take a huge toll, not only on the patient but the entire family, physically, emotionally and also financially,” she says.
The couple had been married 41 years on 23 May 2022. Sadly, Deon died a few weeks later, on 10 June.
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“I am absolutely broken. Deon passed over at 5 past 5 pm today from heart failure,” Bernice posted on Facebook.
Her grief is evident as she chats to W24. “Deon and I were joined at the hip. We were always one. Yes, it is true; I devoted my whole life to Deon and was by his side through this entire journey. It’s been 17 years and 6 months since he was struck down with this ALS MND," she shares.
"I am honoured God chose me to be Deon’s wife, and I would do what I did a million times over if I were given that chance. I was Deon’s rock, but he was my lighthouse.”
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After being her husband’s caregiver for more than 17 years, Bernice now has to adjust to a new normal.
"Days are long and nights even longer as I need to learn not only to find myself again but also learn how to sleep again. I had slept with one eye and ear open, waking as and when Deon needed me through the night for so many years," she says.
Bernice’s message to others dealing with an ill spouse or family member is that they are still the same person inside.
“No illness can change that. Never take a moment for granted; you never know when it will be your last,” she says, adding that she is determined to continue being a source of support to the ALS community.
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“Before Deon was diagnosed, I honestly had no clue what my calling and purpose on earth was. It is now very clear to me, and our sons have assured me that this is what their dad would want me to carry on doing," she says.
"They have encouraged me to go out and share the experience and knowledge I have acquired 24/7 for the 17 years and 6 months that I cared for Deon at home. Others in need of home care are welcome to make contact with me, as that is now my chosen direction.
“Since his illness, he could only move his eyes. This disease may have stolen his life, but he had a fighting spirit and wanted to live no matter what, no white flags ever,” she says. “Three blinks meant I love you. And he said it often."
