I come from a family of caregivers. My mom, as the oldest daughter of six siblings, helped her own mom take care of the younger kids. Once she became an adult and a mother herself, she took care of my older sister, and next she took care of me. While being a mom and wife, my mom became the primary caregiver for my grandmother, who had Alzheimer’s disease. Later on, when my sister passed away, she took in my nieces and cared for them. Then, she cared for my dad when he was ill before he passed away.
It sounds exhausting, I know, but caring and caregiving is all I’ve seen and most of what I know about being a compassionate human being. When my mother became ill at the beginning of 2015, there was no doubt in my mind that I would take care of her.
I saw the outcome, but really didn’t know how I would get there. Over the last several years, I saw my mom getting older, and I knew somewhere deep in my heart that I would have to take care of her. I began to notice my mom having trouble getting around, forgetting things or doing things that encompass normal aging. I joked with her that I was going to put her away. We’d laugh because we both knew it was definitely a joke.
Then, Mom went into the hospital and came back to me with a host of problems: COPD, congestive heart failure, pulmonary embolism and major depression, just to name a few of the morbidities. She’s currently taking what seems like a million medicines everyday.
I just don’t necessarily believe in institutionalized care unless there are no other options. Rehabilitation, yes; and hospice, sure. As long as I’m physically, emotionally and financially able, caregiving should take place in the home.
However, saying it and doing it are two different things.
I am 39 years old, and my mom is 75 years old. This is the point in my life (as a single, childless woman) where I’m supposed to be embracing my independent status, being selfish or acting a fool — or trying with all my might at age 39 to reverse that single, childless status. Currently, as a working family caregiver, I don’t have time for any of that.
When I have the opportunity to do something other than work or take care of Mom, I’m exhausted. Even though I have help, it’s only for a small amount of hours. Part of my mom’s illness has her bedridden; so, I’m up at 5 a.m. to change her, then I go to work, come home, feed her and give her meds. Then, I do it all over again. When helpers step in, I’m usually just catching up on sleep.
I knew about the stress of family caregiving because I had seen it — and to some extent been a part of it — but that was through my eyes as a child. The experience is a completely different story.
Here’s what I’ve learned from being my mother’s primary caregiver:
- The healthcare system is not prepared for the older generation. Much of my time is spent in discussion — and argument — with healthcare providers about what’s covered and not covered, and learning what Medicare allows home-care providers to do and not do. I pay for many of my mom’s supplies out of pocket.
- I’ve learned detachment and release of control. I am not a healthcare provider, and therefore I have had to release a lot of control when things go wrong.
- I’ve learned that making mistakes isn’t the end of the world, nor does it make you a bad person. I’ve overslept past the time I was supposed to give her meds, didn’t change her when I was supposed to and given her the wrong foods, but my intentions were good. The mistakes were just mistakes and weren’t fatal.
- I’ve learned to nurture my inner teenager. For various reasons, I always had this overdeveloped sense of responsibility growing up. I rarely did “bad stuff.” Now, as an adult, when I have the time and the energy, I’ve been known to sneak out of the house for a few hours to make out with a boy.
- I’ve learned to remember my favorite things. Sometimes I veg out in front of the TV to take in my favorite Little House on the Prairie reruns with my pint of Ben & Jerry’s ice cream when the dishes need to be washed. It’s all okay. What needs to get done will get done.
- I’ve learned unconditional love. Sometimes when I look down at mom when I change her, I imagine a scene that I don’t remember. I imagine her face looking down at me with love as she was changing my diaper as a baby. This is love that has come full circle. It is in those moments that I know I am doing the right thing.
There is a spirituality that resides in caregiving, particularly elder caregiving that cannot fully be described unless you are a part of the experience. The purpose may just be in the lessons learned. The lessons of love that come from every frustration, set back and every tear.