Advice From A Cancer Caregiver
By Marry Mint on April 04, 2014
I've been looking forward to introducing you to Megan for some time now. She is sweet beyond words, has an adorable pup named Cooper and best of all, is a cancer caregiver!
[You can find the first post of the "Chat With A Caregiver" series here.]
Before Megan takes over, I want to make sure you know about her blog! She started A Girl And Her Hound as not only a personal outlet but also to bring awareness to melanoma. She includes something she's thankful for as well as a fact about skin cancer in nearly every post!
Tell us about your patient, Ryan.
I had the pleasure of being the primary caregiver to my late husband, Ryan. Ryan fought with Melanoma for just over two years. In 2010, he discovered a malignant mole on his right arm, after testing and a short stint with Interferon, he was considered to have no evidence of disease. In 2011, his Melanoma returned but this time metastasized to his brain. After several brain hemorrhages, months of therapy and seizures he passed away. Ryan was fortunate to be treated at Memorial Sloan Kettering Cancer Center where he was able to receive the best medical treatment and care.
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.?
We would have been really lost without communication, especially since Ryan had a brain injury that lowered his comprehension and motor skills. I had one dedicated paper calendar that included all appointments, my work schedule and other essential items. From there I would email the calendar to family and input everything into our phones. There was never any question of who was picking up prescriptions or taking Ryan to his appointments.
With today’s technology it’s become easier to keep track of everything. I recommend Google Docs or any cloud based, shareable organization program.
What did you feel your role was in the medical decision making process?
My role in Ryan’s medical decision process was not always so black and white. As young newlyweds, sometimes medical professionals would chose to talk more with Ryan’s parents than with me. It was super important to Ryan that when able, he would be involved with his medical decisions and when he was not able, that I made his medical decisions.
It was uncomfortable at times to step up to the plate, while being courteous to everyone involved, and make it clear to the medical team who was the decision maker. We were firm believers that we had to take Ryan’s health care into our own hands and that’s what we did.
How did this affect your marriage? Do you have any advice for couples who may be in a similar situation as you and Ryan were?
At the height of Ryan’s illness we had only been married for 3 months but had been together for several years. Ryan had a brain hemorrhage that left him unable to communicate properly and left his right side temporarily paralyzed. Both of our frustration levels skyrocketed at times but his amazing therapy team taught us communication techniques and different ways to deal with our emotions.
I was really fortunate that most of the time during Ryan’s illness I was able to take time off from work to be with him. I got to watch him learn to talk, walk and even text again. It was truly an amazing experience that was so wonderful to have. Watching him take his first steps after the hemorrhage brought tears to my eyes and made all of the hard work worth it.
The experience wasn’t easy by any stretch of the imagination and at times left me questioning everything. However as the caregiver, I switched into what I like to call ‘momma bear’ mode and was able to put my frustrations aside to focus on helping Ryan live the best life that he could.
My advice would be to hang in there and don’t sweat the small stuff! I think with a cancer diagnosis you realize that pretty quickly but take joy in the positive moments you have with your patient.
If you had to give just one piece of advice to a new caregiver, what would it be?
Be positive and don’t be afraid to ask for help. Be specific about what you need. People always want to help but often don’t know what to do. Suggest things to people when they offer to help. Even grocery shopping or bringing over dinner helps.
We both were fortunate to have amazing family and friends to help every step of the way.
If you could give just one piece of advice to a new patient on how they can help their caregiver, what would it be?
Try to be nice. Your caregiver is selflessly devoting themselves to your care and while I know that you are going through something unimaginable, they are too. They really do have your best interest in their heart.
What is your favorite support resource?
I read a few really great books, my favorite was: Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's by Kairol Rosenthol This book had great tips and resources, little things like reminders to make extra copy of your house key so that you helpers can access your home if you aren’t home.
One of the things that Ryan would always say is “It Is What It Is.” This can be taken in several ways but we used it as a way to accept the place we were at and to not focus on the what if’s or the past.
It was truly my honor to speak with Megan and follow her blog these past couple of weeks. She is such an inspiration. I talk a lot about perspective on my blog and I have to be honest, reading Megan and Ryan's story hurt my heart. I know that my words won't do Megan justice, but her strength is it be admired. Period.
Right now you can find her writing about her upcoming move and home repair projects! Megan is a fantastic resource for anyone with a spouse facing cancer and she would love to help.
You can find Megan's Facebook page here or email her at megan.m.weir (at) gmail (dot) com.
Thank you again Megan!
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