caregiver

Through the Eyes of a Caregiver

When I was asked to share my thoughts on what cancer is like from the perspective of a caregiver, I thought back to what life was like with my husband prior to his HPV-derived throat cancer diagnosis, when my care giving consisted of making meals for our family, doing laundry, going to school events, and other typical family care giving activities.  To say the least, life was good!  Jon was a successful sales and marketing executive who spent a lot of time working, traveling, talking, reading, golfing, exercising, laughing, cooking and generally always having fun no matter the setting or the audience!  He was a strong, smart, driven and compassionate man who loved being a husband and father.

As you can imagine, Jon’s cancer diagnosis came as a complete shock!  The business trip that was scheduled for the following day was quickly cancelled so we could absorb the news, talk with our son, and begin scheduling appointments with oncologists and surgeons.  The countless medical appointments were a blur…so much information to digest, so many possible side effects from the 7 weeks of radiation and 3 chemo treatments that suddenly replaced the spring break trip, work travel, business meetings and family gatherings on Jon’s calendar.

I wasn’t thinking about what the treatment plans were replacing on MY calendar…because I didn’t have cancer, my husband did.  However, I quickly learned that my schedule as a caregiver would become dependent not only on Jon’s treatment schedule as a cancer patient, but also on the consequences of that treatment on Jon’s ability to function as he had for the previous 25 years of our marriage.

Absolutely nothing or no one could have prepared me for watching Jon suffer as his entire being was consumed with fighting cancer…from the physical to the mental to the emotional…it was the fight of, and for, his life.  As his wife, I was so focused on caring for my him and keeping life as normal as possible for our 16-year-old son, that I was unaware of the physical, mental and emotional toll that cancer would have on me.  I would not understand this until well after Jon was back on his feet…when he was able to go on his first business trip after a full year of being “grounded”.  While Jon started back to work, and Matthew continued his busy high school schedule, I found myself sitting at home wondering what my purpose was!  It felt as though I was no longer “needed.”

For almost a year, Jon NEEDED me!  He needed me in a way that I could have never imagined. I never could have imagined my husband being unable to drive or travel, unable to work or think, unable to speak or swallow, unable to parent or be a loving spouse…. basically, unable to participate in life.  Putting it bluntly…. treatment sucked! The mental and emotional burden of watching my husband slowly disappear before my eyes was hard….no meals together, no drinks on the deck, no one with whom to discuss the ups and downs of life, no one to help me keep our son’s life as normal as possible when there was nothing normal about it…it was the loneliest time of my life!

Fighting cancer is hard work…for the patient and the caregiver.  Jon had an amazing medical team and caregiver (yep…that’s me!) that developed a treatment and care plan to provide him the best opportunity to win the fight.  Caregivers, please remember to care not only for your loved one, but also for yourself. The better you care for yourself, the better care you can give to your loved one.  We caregivers are stronger than we think…but we should never think we are so strong that we don’t ask for, or accept, help from others.  People want to help…so let them!  Let them feed you, shop for you, sit with your loved one while you sleep or shower or exercise or go to church or have lunch with a friend, or do whatever it is that fills your bucket.

Speaking from experience, I underestimated the value of self-care.  It was hard to think about leaving Jon, even for an hour, when he needed me more than he ever had.  I promise that you will be a better caregiver if you take time for you.  It is not selfish…it is necessary!  It will allow you to move forward when they don’t “NEED” you anymore because they are able to go back to living their lives.

Kris Scharingson is a graduate of Central College in Pella, Iowa and Iowa State University.  She is currently serving as the Volunteer Chair of the ACS HPV Cancer Free Volunteer Work Group and is serving as the sponsorship chair for the Relay for Life of Ankeny.  Kris and her husband Jon have been married for 27 years and have a 19 year old son Matthew and a 12 year old puppy named Griffey.

Cervivor Dad

It’s strange to think back on my experience as a husband and father when Mary was in treatment because for most of that time I put myself to the side. Everything was put on pause to focus on making sure she was getting to her appointments, as comfortable as her body would allow, and – on the good days – eating.

I’m not complaining. It’s just what you do. When a little kid gets hurt, you run to check on them. When something catches fire, you put it out. And when your wife is diagnosed with cervical cancer that’s spread to her lymph nodes, everything else seems pretty small by comparison.

When you’re in an emergency situation, you suddenly become very clearheaded and logical. “Let’s see. The dog is on fire, so that’s probably the first priority. Let’s get a blanket on her. Okay, that’s out. Mental note: call the vet after this. Now the teenager is under a burning rafter and the baby is in the playpen. So yell at the teenager to carry the dog out and grab the baby with one hand and the diaper bag with the other, just in case.” Later, after the emergency is over, your brain exits Survival Mode and lets you collapse into a pile of trauma-flavored Jell-O.

For those months between diagnosis and the “all clear” sign, it was an emergency situation. My brain shut down most of my emotions so I could A) better attend to Mary’s needs and B) survive the stress and fear without sinking into despair or having seven simultaneous heart attacks.

I’m lucky. My coworkers are very understanding and sympathetic when it comes to family matters and the nature of my job allows me to work from home. Thanks to that, once Mary’s treatment went from surgery to external radiation every weekday, chemo once a week, and several internal radiation torture sessions, I was able to stay home with her and bring my laptop to chemo.

What was hard was watching her waste away. That was a sadness I couldn’t turn off. She had no appetite and became weak and skeletal. Walking 20 feet to the bathroom was exhausting for her. It hurt to see her suffer, and I think I used my work as an excuse to sit in the living room to witness her suffering a little less, which I’m not proud of. I never allowed myself to imagine what would happen if she didn’t make it. It’s like asking what you would do after the world blew up.

Helping the kids was easier. Our teenager was zealously optimistic. He knew with the certainty of youth that his mom would be fine. I was jealous. Our daughter, on the other hands, buries her emotions (like her dad), so comforting her took some effort. Once she was ready to talk, she appreciated the reassurance, but until then I just told her it would be okay and trust that the words made it into her ears.

Their grades suffered, but I couldn’t get upset with them. I was letting the place become a pigsty and slipping some at work myself. You may have heard, cancer is a little distracting. I figured we’d all straighten out when it was over, and we eventually did.

A year and a half later, Mary still has trouble. Some lymph nodes were removed, so her legs and feet swell up. She also has some serious anxiety. It’s gotten better, but she has good days and bad days. Seeing her struggle made me open up about my own lifelong depression and anxiety, mostly so I could help her. I talk her through bad times if she needs it and we give each other space if one of us needs that. The kids know that sometimes people need alone time and that’s okay.

Sometimes she faces bouts of horrendous chronic pain. There’s nothing we can do about it without medication. After everything she’s been through though, I figured she may want something more natural. One doctor along the way told her to consider medical marijuana, and whilst there seem to be many benefits she isn’t too sold on the idea of smoking marijuana around our children. Which, as a mother, is a fair sentiment. A friend told me about CBD oil products to help ease the pain and lessen the anxiety for her. I’ve been considering it after finding a coupon here that would make a first try a bit cheaper, but we’ll want to get an all clear from her doctors first.

Like many who face death, we came out the other end more focused, like we were forged in the fire. Mary speaks and writes about battling cancer and her volunteering fills me with awe and pride. The kids are more appreciative of basically everything. And I learned that openness is not lethal. We’re all doing things we want to do, skipping things we don’t, and being fuller versions of ourselves.

We know that if it resurfaces and she has to go back into treatment, we’ll have a better idea of what to expect and what to ask. We also know the statistics and the odds. But until her next regular oncology appointment, we’re just living life.

Dan lives in Richmond, Va. with his wife Mary and their two kids. Dan and Mary met when she started coming to see bands play at his house. She fell madly in love with him after hearing his college radio show which featured terrible music and a fictional wrestling program. Now Dan proofreads credit card websites, which is as exciting as it sounds.