Picture in your mind the typical life of a 9-year-old and you most likely would think of the following: play dates with friends, participating in school activities, and gushing over the latest pop star / movie / television show.
I now would invite you to picture another 9-year-old girl, waiting to be picked up from school by her grandmother. As she sits on the school steps, she looks to her left and instead sees her grandfather, struggling to walk to her, cane in hand, leaning to one side with a shuffling step. The girl runs up to him and tells him that he can’t be out in his condition. The grandfather tells her that he is there to get her home safe; but it was the girl that ensured that she got her grandfather home safe, supporting him as he walked and having him stop at sign posts to prevent a fall.
That 9-year-old girl was me, being a caregiver to my grandfather who suffered from vascular dementia.
At the time, I didn’t realize that I was a caregiver.
I was being a granddaughter, helping my grandmother and mother care for him.
My involvement was without question: we were a small family, we lacked the financial capacity to hire formal support, and we strongly valued and believed in a family-centric approach to care.
And without question, it was a challenging experience. I performed responsibilities that any adult would find difficult and I saw things that would keep any adult up at night.
But, in spite of that, I wouldn’t have traded those 6 years of caring for my grandfather with anything else in the world.
It was an honor to have had a hand in ensuring that my grandfather was kept comfortable, felt joy and maintained his dignity not only in illness but in death.
And it was a greater honor to have had an opportunity to express the love that I had for him, even with the sad fact that dementia took away his awareness of it.
And it was living through that experience and learning lessons from it, that I was then able to be an even stronger, more resilient caregiver for my grandmother. And just as we did for my grandfather, my mom and I ensured that my grandmother experienced comfort and joy while also having her dignity intact.
And I once again had that greater honor to show her the love I had for her, and it was extra special as she had the awareness to fully receive it.
When my grandmother died in late 2012, I had completed 15 years as a caregiver.
I was 24 years old then, but I felt that I had lived a lifetime.
And I never felt more alone, overwhelmed and disconnected from the world and from myself.
I had lost an identity, and with it, I lost the two most important people in my life.
While I have and will continue to emphasize the ways in which caregiving has positively impacted my life, I would be lying if I said that I came out of it untraumatized and without mental health struggles, most notably an eating disorder that I dealt with for almost 20 years.
The trauma and the struggles I experienced stemmed from several factors: not knowing how to process and cope with seeing my grandparents suffer and die from their illnesses, not knowing how to handle the pressures of being the best granddaughter/caregiver while also being the best student, the disconnection that I felt from my peers who didn’t share my experience, and the disconnection that I had with myself because I did not have the time that I needed for self-discovery.
All of the above came at me full force in late 2012 and I did not have the willingness or courage to face or process it.
And for a long time, I chose to sit in darkness, to fall deeper into anxiety, depression and anorexia.
It took everything I had within me to finish my undergraduate degree in 2015. I finished for my grandparents and for myself. Even in the midst of darkness, I had hope because I had a purpose which was to be a change maker in improving the quality of life of older adults and their family caregivers.
I had to keep going and I had to keep hoping.
A stronger sense of hope arrived in late 2017 when I started working my first job. I was 29 years old. It was there that I gained the confidence and support to then continue my education in 2019 to receive my Master’s in Social Work degree at Fordham University’s Graduate School of Social Service.
I now write this article as a Licensed Social Worker, having reached my one-year anniversary in a position where I work to ensure that home-bound older adults have the services and support that they need to live independently at home.
I also write this article with a stronger peace of mind and 3 years recovered from anorexia.
And I write this article having had a recent opportunity to work alongside caregiver trailblazers across the nation to advocate in Washington DC for the full implementation of the National Strategy to Support Family Caregivers.
My story is one of resilience and hope through the ups and downs and the before and after experiences of young caregiving.
And resilience and hope is what I wish for current child and young adult caregivers to build and feel within themselves in their unique journeys.
But they can’t do this alone.
If there was one thing that I wish I had at the very start of my caregiver journey, as that 9 year old girl, it would have been to have a person and/or a community on my side to share my feelings with, to learn coping strategies, to reassure me that my experience was unique rather than abnormal, and to facilitate a harmony between caregiving and the other socio-emotional milestones that I had to achieve as an child, adolescent and young adult.
To have had the above in place would have reduced the struggles I went on to face.
I am reassured and filled with joy and hope in the programs and initiatives that either are in place or are in the process of becoming in place steadily across the nation to support child and young adult caregivers.
I am inspired by leaders, who were past young caregivers, that work passionately to ensure that children and young adults are supported throughout their caregiver journeys.
I am committed to doing my part in advocating for the rights and well-being of child and young adult caregivers and to continue to share my story to provide reassurance that they are not alone, that they are resilient and there is hope for their future.
This article was originally published on LinkedIn on November 16, 2023.