MPN Caregiver Spotlight

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.

MPN Caregiver

Ina Gunson

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
    MPN caregiver Ina and her mom Ruth, MPN patient

    Ruth and her daughter Ina

    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.

Read more patient / caregiver stories here.


About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

 
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