01 June 2014

Chat With A Caregiver

I've recently had the pleasure of getting to know Kristin from Sounds Of My Pitter Patter.  Kristin has the most handsome son named Eli and I've grown to love reading about her family's adventures. I was so surprised to learn that at one point Kristin and I both worked for the same Tenneesee based company, Youth Villages. Talk about a small world! 

Kristin is also the brains behind Go Shout Love, calling attention to children who are battling rare and life threatening illnesses. Kristin has a very personal experience with pancreatic cancer and is here today to share her story. 

Take it away Kristin! 

My father passed away from pancreatic cancer in 2006 when I was 19 years old. While my mother was the primary caregiver for him, I definitely would not rule out my brother and I as caregivers. You take on a very different role when you are the child of a cancer patient. You should not be a caregiver as a child, but unfortunately, there are roles you must take on that become somewhat of a caregiver. My dad was diagnosed with one year to live in 2005 and died 8 months later. The tumors in his pancreas were inoperable and he did not respond to chemotherapy. He received the best treatment he possibly could from some of the best doctor’s in the world, but unfortunately pancreatic cancer is a very hard cancer to beat. 

Can you explain the importance of communication in a caregiving role? Do you have any advice on how to effectively communicate with the survivor, medical team, family, etc.?

I think when you are the child of the patient communication is crucial and key to helping you to keep going and pushing through. This is a terrifying time for a child. You are seeing the person who is supposed to be taking care of you and who is your rock, sick. You see them struggling and you see them hurt and that is scary. It really helped me and my broken heart when my dad would be open and honest with me about how he felt and about his fears. When my dad was vulnerable and open with me it would calm me down. I remember towards the end of my dad’s life he said that he was not scared anymore and he was ready, but that he would miss us. That helped me more than words can describe. I was so thankful my dad was able to learn to articulate his thoughts and feeling with us during this time instead of shielding them from us. If I had to sit and guess at what he was thinking and wonder his fears it would have drove me insane. 

How did you make time for yourself? 

My parents were really adamant about me still being a teenager during this time. They wanted me to see my friends and to do things that I enjoyed doing so that I did not feel isolated and alone while trying to navigate through this dark period. It helped me to go out with my girlfriends and to just do things we always did and to not be treated any differently. One of the best things that helped me through these times was to still be goofy and to still be me. I remember one time my friends and I just ordered an ungodly amount of take out food and shoved our faces while making up songs that had nothing to do with anything and break dancing in the hallways of my friends dorm. That was us and the fact that we could still be us and do things that were “us” helped me to survive. 

What was the most common disagreement you had with your Dad?

The beginning of my dad’s illness was very hard. I know that in the above question I said communication was key, but it took my dad a couple of months to open up with us. He was constantly trying to be the “protector” and pretend everything was okay. When we were told that there were no more roads to take and to just enjoy our time with him my dad refused to believe that. He became fixated on figuring out what to do next, instead of just being. I think that was the biggest disagreement we had, but it was hard because how do you tell someone there are no more roads to turn and to just be?

If you had to give just one piece of advice to a new caregiver, what would it be?

From a child’s standpoint my advice would be to just be there. My favorite memories during those times are the times that may seem insignificant to some like rubbing my dad’s feet, scratching his head, going to get breakfast with him and taking goofy pictures. So much is out of our control so the best thing we can offer is to just be there. It will be hard. I will admit, when things got ugly and I couldn’t handle it I turned away a lot and ran to my friends house or my boyfriend house and now that is some of my biggest regrets. If I could do it all over again I would be present more. 

 If you could give just one piece of advice to a new patient on how they can help their caregiver, what would it be?

Do not forget about your caregiver. I know that you are going through the unthinkable, but your support system is too. My mom worked day in and day out. She is a saint. The things she had to do for my dad and how gracefully she did them blow me away. I can only pray that if I ever find myself in a similar situation I can do them in the same fashion she did. When my dad would take moments to appreciate her or support her I could tell it did so much to brighten her day and to give her that extra push to make it through.

What is your favorite support resource?

I found a lot of support through pancan.org . I found support groups and ways to get involved with spreading awareness for cancer. It was also a huge resource when my dad was diagnosed and connected my family with a lot of great information as far as clinical trials, medicines, doctors, etc. 

Do you have any inspirational words you'd like to share? 

Honestly, what kept me going was to know and trust that God had my father in His hands and He was in control. 

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