It’s taken me many years to fully understand what it means to be a caregiver.
In the early years of my mom’s battle with Alzheimer’s Disease, I would brush it off when anyone called me one. After all, I was living 2,500 miles away and my dad was the one with her 24 hours a day. He was the one feeding her, bathing her and keeping her safe. He was the “real” caregiver.
As the years passed and she needed more care, the strain on my dad increased. He had to retire because caring for my mom became a full-time job. It got harder, the hours got longer and the emotions even heavier to bear. My husband, brother and I noticed the toll it was taking on him — a healthy man in his early 60s at that point. We started to understand why 30 percent of caregivers die before the loved one they are caring for, and we started to fear our dad would become part of that terrifying statistic.
As the years passed and she needed more care, the strain on my dad increased…We started to understand why 30 percent of caregivers die before the loved one they are caring for, and we started to fear our dad would become part of that terrifying statistic.
My dad was very protective of their situation. It was like he and my mom lived in a house of cards he had to constantly maintain, and any change he didn’t completely control would blow the entire house down. He spent his days entirely devoted to her care, barely ever taking even a few minutes for his own physical and emotional health. He didn’t want to hear our suggestions, which was difficult for us to accept.
The frustration of the sideline
Luckily, I have my own caregiver in the form of my husband, who had insisted shortly after my mom’s diagnosis that I find a therapist to help me through the long journey of the disease. She gave me a lot of tools that helped me rationalize and work through my own pain. The frustration of being kept on the sidelines of my mom’s care and the fear of what might happen to my dad if he continued along this completely selfless path were topics we discussed quite often.
Eventually, my wonderful therapist suggested that instead of trying to care for my mom, we should focus our attention on caring for my dad. This made so much sense to me, and finally I understood that it wasn’t my mother who needed my help. She was being cared for beautifully. It was my dad who needed the caregiver.
So, we had an intervention with him one night after my mom had been put to bed. We sat him down and said, “if you want to be the one to care for Mom we respect that, but you have to let US care for YOU.”
I think it was partially his exhaustion that made him say okay. He could still be in control of caring for his partner of 40 years, but with us now in the mix his entire load would become lighter.
Being there for Dad
Since then, helping my dad has been our focus as he continues to be the caregiver for our mom. We are lucky enough to be able to bring in help at their house, but more than that, we try to be there for Dad to talk to him, listen to him, take him out when he’ll let us, bring him treats when we can, and insist he take time for himself to be more than just her caregiver.
In the past 12 years, I’ve met so many kinds of caregivers. Some have given up their entire lives to care for someone else and some help in ways beyond the day to day. But the thing I’ve learned the most is that caregivers are the strongest when they are cared for themselves.
Writer, actor, dog lover. Cofounder of Hilarity for Charity, a movement to inspire change and raise awareness about Alzheimers.