November is National Family Caregivers Month – What does it mean to be a caregiver?
by Ina Gunson
I am a 35 year old taking care of my 65 year old mother, Ruth who will be turning 66 next month. We have a very close bond, my Mom is my best friend. In 2017, she was diagnosed with Essential Thrombocythemia. Then in 2019, the blood cancer progressed to MPN/MDS Crossover.
Here are some real life examples of being a caregiver:
- I have accompanied my Mom to every single doctor appointment since fall 2016. I record it on my phone & take detailed notes. I prepare an agenda for each appointment as well. I created spreadsheets to track her blood levels & vitals. I have been by her side during every single chemo session.
- I give my Mom back massages & foot massages to help her relax. I use peppermint foot cream & she loves it. We do tai chi together & light cardio like geriatric exercises. It’s always good to get the blood circulation going. We enjoy cooking together & listening to music. When Ruth is feeling well enough, we go for light walks & enjoy spending time outside.
- I sat right next to her in April of this year when she had a bone marrow biopsy. I wanted to hold her hand. I soon learned I have vasovagal, as my blood pressure dropped quite low and I fainted. In July my Mom had another bone marrow biopsy, I went in the room but kept the curtain closed in between. I kept saying over & over again “You’re going to be okay, I’m right here.”
- I watch endless webinars online to learn as much as possible. I engage in conversations with others in the blood cancer community. Even though some may share the same rare blood cancer diagnosis, the genetic mutations truly make it a heterogeneous disease. I always ask questions, I always want to learn more. I will never stop talking about blood cancer.
- The true definition of a caregiver is one who puts someone else’s needs before their own. And only real love can do that, right from the heart. And one thing I can share with you is that I do that with joy because my Mom, Ruth is the most amazing & incredible woman so she shouldn’t have to go through this alone. I will always be right beside her. Sometimes I might even annoy her lol, but I’m always right there just in case she needs me. And I will do my best to make her laugh as often as possible.
- I’m a caregiver that steps in when people make irksome and insensitive remarks about my Mom’s illness. A caregiver chimes in when my Mom is exhausted & doesn’t have the strength or patience
to explain. A caregiver knows when a wheelchair is needed. A caregiver has called the doctors on call many times at 2:00 or 3:00 in the morning. A caregiver has driven twice the speed limit at 4:00 AM to CVS to pick up medication. A caregiver that works full time & had 21 vacation days this year & I used up every single one of them for doctor appointments. A caregiver that ended friendships that were becoming surface & draining. A caregiver that has cleaned my Mom’s puke up from the floor. A caregiver that has become witness to blood cancer living in our home, taking up more & more space as the illness progresses. A caregiver that talks more about medical terminology than small talk. A caregiver that always wants to know the vitals. A caregiver that feels a deep pain in my heart when my Mom is suffering throughout this illness. A caregiver that wants to infuse every moment with love & peace. A caregiver that wants other people to know one day you may be caregiver. Just like Suleika Jaouad said in her beautiful & meaningful Ted Talk, “Every single one of us will have our life interrupted, whether it’s by the ripcord of a diagnosis or another kind of trauma. We need to find ways to live in the in-between place managing whatever body and mind we currently have.”
- I’m a caregiver that knows when to speak up & when to shut up. I’m a caregiver that will push my Mom to fight harder & will encourage her to rest when needed. I’m a caregiver that has so much love in my heart, I would take years off my life & give it to my Mom. I’m a caregiver that would give my Mom my health & my youth if I had the power to do so. I’m a caregiver & I’m the best damn caregiver out there. So, hold the ones you love tightly & tell them often how much you love them. And when the time comes for you to be a caretaker one day, know that it’s the hardest yet most beautiful & special thing one can do for someone they love dearly. In the end, we’re all just walking each other home.