I became an advocate for caregivers out of necessity because I didn’t want families to have to go through what my family experienced with my dad. In 2019, my dad took a bad fall down the stairs, which required him to have emergency brain surgery. During this time it was extremely stressful to balance work, family and caregiving but thankfully my sisters and I were able to care for him. We took shifts in care and because we were able to be there for him, he was progressing. After a few months Dad started to decline.

To our shock, Dad developed an unstageable bedsore (also called a pressure injury) unbeknownst to the 3 daughters that were by his side daily. This could have been prevented if we as caregivers were given the opportunity to be more heavily involved in his care plan. With clear lines of communication about what was happening or even to be educated on the risks of pressure injuries, as his care givers we could have taken the appropriate steps to ensure the wound on his backside was being appropriately taken care of. To do what was necessary to prevent it from happening in the first place. That’s why I started to speak out. What happened to dad shouldn’t have happened and it haunts my family to this day. Caregivers need to be integrated into the careplan so BOTH medical teams and caregivers become essential together.

Many caregivers work 9 to 5 every day and in my case, I was fortunate to have a few days to work remotely which allowed me to care for my Dad at the hospital. My Sisters and I spent many hours/days at the hospital which led to less time spent with our families at home.  I was lucky my boss was understanding and knew I worked a few days at the hospital. My sisters didn’t have the same flexibility, so they would often come after hours to spend time with Dad or take a day off work. We opted to also bring in a PSW who took a significant load off of us when we couldn’t be by dad’s side. I will always cherish a moment when dad woke up and looked over at me and smiled; despite him sleeping for hours on end, he knew I was there and that’s what is important.

It’s time to reconsider what a “sick day” means for employees. Having 5–10 sick days a year isn’t enough to care for a loved one who needs significant care. Perhaps a caregiver benefit that supports both the caregiver (to hire a PSW) and (flex days) so it works for the employer as well? I will continue to advocate for this because no family should have to choose between supporting their loved one while worrying about their job and income.

Being an advocate and a caregiver has given me a voice to not only share an unfortunate situation, to raise awareness on the dangers of pressure injuries but also make a positive change. There are always lessons to be learned if we don’t stand to make change happen, then others will succumb to the same fate. I will continue to do my best to onboard Caregivers the tools I learned first-hand, so the path is paved a bit smoother.