The year was 1981, the month was December, and little did I know that I was about to embark on one of the most emotionally charged periods of my life. I was about to become a caregiver, a role that I would play for the next 18 years, a role I didn’t know existed beyond my own child-rearing years.
Up to that point in my life, I had been blessed with healthy children and healthy parents—parents who had helped me drive kids to school, take them to the doctor, or get from the grocery store the much needed gallon of milk for breakfast the next morning.
I was happy and content that morning in December until the news that my father was in the hospital reached me. Like the majority of caregivers, once the diagnosis of renal failure was given and dialysis treatment was begun, I felt the crisis was over. I thought that in a couple of days things would get back to normal, and I could get back to my routine of asking “Papi” or Mami” to baby-sit for me.
Like the majority of caregivers, I didn’t know that, that day, that moment was the “best” moment my father and my mother would have for the rest of their lives. It is not easy to recall all the experiences I have gone through as a caregiver, first for my father, and later for my mother. While my father’s physical condition was his main impediment, my mother, on the other hand, quietly and slowly began to lose her mind.
It is amazing how the challenges of taking care of someone with physical impediments is totally different from the challenges of taking care of someone with Alzheimer’s disease. From my perspective, hers was the more devastating of the two because I began to question my own reality. The other person is presenting a different reality from yours, and you don’t know how to react—whether to be angry, sad, confused or afraid. The role reversal between my parents and me, and even between my children and my parents, began to happen very quickly. At the beginning I didn’t want to take control of their lives, but I had no choice. The difficulty was taking control at the right time, for the right reasons.
I thought my biggest challenge was going to be transportation to and from the dialysis center, and that the “rest” would be done as usual. I truly didn’t know what the “rest” was. I discovered that the “rest” included everything, from bathing, to dressing, to feeding, to moving, to toileting—and not just one time a day, but several times a day.
There were several things that surprised me through this experience: No agency was able to handle everything my parents needed, no directory that I could buy or obtain to find services, no public knowledge and support for what I was doing, no recognition from my employer, no place that I could go to just “ventilate” my emotions.
The insensitivity of the “system,” the indifference of the processor, the superiority of some entities, and the helplessness experienced while caregiving were all emotions I felt as a caregiver. Some of the most difficult moments for me included my father’s inability to speak at the end of his life while having complete awareness of his environment, contrasted with my mother’s being unaware of her environment. The fact that she died alone still hurts me.
People talk about compassion, but when it is time for them to exhibit that characteristic, few know how to do it. And caregivers need compassionate people around them. Being a caregiver for my parents has taught me never to take for granted the health that I have, the mobility I possess and the agility of my mind. It has taught me to live my life everyday to its fullest because retirement may, or may not, be there for me as I have planned it. Being a caregiver has convinced me of the value of prevention and early medical intervention. It has given me a different outlook on life—more patience, more compassion, more respect for our elders and more courage to fight for other caregivers like myself.
I was technically a caregiver for 18 years, but I will always feel and think as a caregiver for the rest of my life.
Dr. Gema Hernández