14 March 2014

Chat With A Caregiver {New Series}

It's Friday already?! This week flew by over here. Having my mom and sister here has been fantastic! I love doing chores and cooking with both hands. It's the little things...
Today I'm starting a new series! I've discussed before just how important the role of caregiver is to any patient/survivor's cancer treatment and overall wellbeing. They have such a huge responsibility and are truly a vital piece of the cancer "process."
I'd like to create a resource for caregivers to get advice, encouragement and support from other caregivers. I will be dedicating one post a month to have a little sit down chat with a a caregiver. 
This week we are starting with my caregivers; Mom and Dad. 
You guys know a bit about my cancer diagnosis/treatment already, so we will just skip that part. Obviously Mom and Dad were "parent caregivers" of a then 18/19 year old. Super awkward stage in life. Not a child, but not fully and adult either. 
Here is what they have to say:
What did you feel your role was in the medical decision making process? Elaborate. Did this work for you? Why or why not?

DAD:  Initially I wanted to take charge and make things all better.  That’s what Dads do!  Ultimately, I had to trust that my survivor was in charge and it was my role to support her decisions 100%.  I also, kinda, adopted the role of “calmer.”  No matter what is going on; inconclusive scans, “let’s keep an eye on this spot” scans, be calm!  Calm is contagious.

MOM: We were initially in a gray area as caregivers.  Our daughter had barely turned 18. I feel most 18 year olds would still let parents make most medical decisions for them.  Not only was she legally in charge of her medical decisions, she also WANTED to make her own decisions.  Thinking selfishly; I am certainly glad that we agreed with all of her decisions.  At one point I got kicked out of  her surgical oncologists office. She told me that if I could not stop asking questions first, I wouldn’t be invited to appointments any longer.  If my memory serves, I stopped.  I would have been devastated if she had excluded me in her treatment. After she chose her treatment plan at MDAnderson, all big decisions were basically made.  This worked for me, because I knew what she wanted and could support her decisions.  Moms, I really do not think this is a typical situation for most 18 year olds.  I still feel like most would have parents make medical decisions.  

How did you stay organized? Bills, appointments, medical records, etc. 

I have a great wife and we are a great team.  We kept some things the same e.g. she took care of the bills and household management.  Sometimes we reversed roles e.g. I had to occasionally speak with physicians to get answers to questions that she would want but was not in the frame of mind to ask.  I guess the key was one of us recognizing when the other was “off their game,” and stepping up to fill the void. 

This is an easy one for me. It gave ME something to control.  She allowed me to be totally in charge of the bills and medical record gathering.  Ha! You are so very welcome Mom. ;)   I kept a binder for medical reports and travel arrangements.  I used my (paper) agenda to manage appointments and travel dates. 

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

Initially, the disagreements revolved around the level of my involvement in decisions concerning care.  After that was resolved, we returned to more mundane disagreements; how much time to spend shopping, where to eat.  Disagreements over regular things made everything “regular.” 

Taking over asking questions with the doctors in appointments.  She can probably list a million other things that we disagreed on; who wants to be living at home with her parents at 18 years old, on chemo?  

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

STAY AWAY FROM THE INTERNET!  No good will come of it.  Everyone offers to help.  You know; “If there is ever anything you need, just ask.”  The hard part is to ask for that help.  So the second piece of advice would be, ask for help when you need it.  People will step up and do amazing things, if you let them. *Ok Dad, that was two...

Learn to read what your patient needs and wants.  If they want your advice, give it to them, shut up if they don’t.  If your patient wants family just sitting around with her, the dishes, and laundry can wait.  Nothing is more important.. Get the preschooler in a carpool, order take out, etc.  If they want you to totally be in charge of managing time, do that. If they want to be in charge of that, let them  You can be a silent back up.

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

Be a great patient.  Let the people in the hospital, and your caregivers, take care of you. 

Let your caregiver know exactly what you want and don’t want.  Easy.

Inspirational words. This can be a quote or simply advice or words that kept you going.  Words? 

There were no words.  There were actions; the bravery of my survivor as she faced her own mortality at an age when most peoples concern is mid-terms or finals, watching my other children step in and blossom, or my wife deal with the most devastating news a parent can hear and never, not for one second, thinking of anything but her kids and her family.  That’s what inspired me. 

My parents were pretty fantastic caregivers during my melanoma treatment. I know now that having your child receive a cancer diagnosis is a parent's worst nightmare. They were both so graceful and 100% supportive the ENTIRE time. They truly are a great team and I got to witness this first hand. To this day; they still take turns meeting me at MD Anderson for my scans and appointments with my oncologist. Mom and Dad made sure I took medications when I was supposed to, helped me cope with physical and psychological effects of cancer treatment and offered distractions whenever I needed them. They also let me be normal. I'm blessed to have parents who allowed me to move back home. They took on the financial, emotional and lifestyle "stress" flawlessly and with so much love. 

I'm forever grateful for them both.

I love you Mom and Dad!

I would LOVE to hear from anyone who would like to contribute! Of course, you are not required to have a blog. Caregivers hold a very special place in my heart and I firmly believe they deserve more support. They have the toughest job in my opinion and I think we should recognize that. These people really are saints!

Before you go; I'm being featured once again on MD Anderson's blog Cancerwise today! {click here}

I hope your weekend is full of family and fun.


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