Samantha Guevara speaks out about what it’s like to be young, colorful, and seeking support from other caregivers.
When one thinks of a caregiver, I am not typically what comes to mind. Outwardly, I am young, heavily tattooed, and have gone through every color of bright, unnatural hair. Typically you will find me with a Starbucks cup seemingly surgically attached to my left hand, and my phone never leaving my right. I am part of an often glossed over group that is growing daily. No one wants to think about being 30, and having the responsibilities of a full time care provider for someone with Alzheimer’s or any other terminal disease. But, the truth is; caregivers are getting younger, and we face challenges that are unique to our age group.
The day my grandmother died, I chose to walk away from a nearly 40k a year management job, and the possibility of having the IVF treatments that would lead to the children I had always so desperately wanted. I chose to leave behind my 3 bedroom bungalow, and trade it in for the uncertainty of caring for someone who has a terminal illness (all with my husband in tow). Within a week, I went from being the boss, to feeling utterly helpless. Every time I took my grandfather to an appointment, the doctors acted like I was not even there. They did not ask me about progress, and all the normal questions caregivers get. I was lucky there was a feigned look of sympathy. When I turned to others, I got the response “It can’t be that bad!”
I tried a support group. That went about as well as baptizing a cat. Several of the women at the first and only group I attended clutched their purses. One asked me if I was looking for the AA meeting. I guess it was the colorful hair, or the arms full of tattoos that threw then for a loop. I stayed for about twenty minutes feeling as if my presence was undesired. I skulked home defeated and poked around for a while trying to figure out where I fit in this equation. Over the next ten months, friends fell away, pregnancies were announced, marriages planned, and although they were moving on; I was standing still. I felt the darkness I imagine every caregiver battles. I held on with both hands to those few who remained. Those who understood.
Finally on Facebook I found a group of wonderful people going through the same thing. From losing memories, to losing basic abilities we all take for granted. This group was an amazing outlet, but still seemed saturated with people who I had trouble connecting to on a personal level. I posed a question recently looking for caregivers under the age of thirty-five. To my shock, the response was immediate. People my age chiming in. It seems like me, they had also been quietly reading from behind a screen, hoping someone out there was like them. Someone who was supposed to be in their prime, but instead was changing comically oversized diapers and managing moods and meds.
I have a sense of immense relief that there are others like me. The young caregiver community is growing at an alarming rate. We are from all walks of life. Some of us do the amazing task of caring while raising children. Some work full time in order to guarantee their loved one has everything they need. We are a varied group who are battle hardened and amazing. So cheers to all my young caregivers! We are not alone. Together we fight to end this terrible disease.