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"The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives."



Seizure Action Plan

Despite suffering from diverticulitis all her life, Allen’s wife Mary was a spitfire. She was the life of the party, and she loved to dance. But in 2013, Mary’s life changed forever. So did Allen’s.

Due to complications from diverticulitis combined with epilepsy, Mary experienced a ruptured bowel. She spent 68 days in intensive care and had an ostomy, a surgical procedure that creates an opening in the abdomen and allows waste or urine to leave the body.

Although the couple received nursing support a few times a week, Allen handled much of Mary’s care, including changing vacuum dressings and ostomy bags, flushing IVs, administering IV meds and more. Plus, Allen took on all the household responsibilities, including cooking and cleaning. Adding to his daily challenges, Allen was also providing caregiving support to his 93-year-old mother at the same time. “I was a double caregiver,” he says.

In the first few years, there were intervals when Mary was feeling better and could get up and walk. “We tried to do some of the things we used to enjoy, like dancing,” says Allen. But eventually, Mary became bedridden, and in the final stages of her illness, she received palliative care. In 2019 Mary died of sepsis. “She died in her own bed, as she wished,” says Allen.

Throughout his caregiving journey, Allen often worried he wasn’t doing enough. “Sometimes I felt inadequate, like when I couldn’t get Mary to eat, and I’d get frustrated,” he says.

“I wish I had known about the Ontario Caregiver Organization’s peer mentor program at the time. They might have had some experience or insight regarding some of the issues and feelings I was going through,” says Allen, who has since become a peer mentor himself.

Allen wants to help other caregivers who may be struggling with the stress and emotional rollercoaster of being a caregiver to a loved one. “Listening is one of the most important components of supporting a caregiver. You have to be a good listener and a non-judgmental one.”

These days, besides being an OCO peer mentor, Allen loves spending time with his grandkids and great-grandkids. He has also become a bicycling addict and practices yoga, tai chi and meditation.

Allen's Top 4 Tips for Caregivers:

  1. Focus on living each day one day at a time.
  2. Listen to and take care of your heart
  3. Get advice from other caregivers. Look into OCO’s support groups or peer mentor program.
  4. Consider therapy and bereavement counselling – it really does help.