Dear Fellow Caregiver,

I have worn similar shoes to those you’re finding yourself in. I’ve been tired. I’ve felt confused. I’ve felt alone and isolated. I’ve felt so overwhelmed, like if one more thing was added to my plate, I might explode. But I am here to tell you that caring for my late husband when he had cancer was one of the greatest honors of my life, one of my proudest accomplishments to date, and something I wouldn’t change.

Having your life thrown upside down when your loved one becomes ill is something you cannot prepare for. Just like an unpredictable storm coming into your neighborhood, caring for a loved one can bring so many unknowns, questions and at times fears and sadness.

I found myself switching from being a relatively carefree young wife who worked full time and had a myriad of other side projects, to having to shelf all that to be a cancer wife. I was attempting to balance my personal life with being a new caregiver. I was tired, stressed and my future with my husband, the man who had been my world since I was 19, was a big question mark.

It wasn’t until I spent hours online looking for resources, that I began to realize I really wasn’t the only one lost on this crazy journey called caregiving. Within the first two weeks after Grayson’s diagnosis, I’d created a blog to update our supporters on his health journey and was receiving kind messages of support that made me feel less isolated. Back then, there weren’t the amazing virtual and social media support groups where you could connect with other caregivers online, so I made sure that I had a couple people in my corner to support me when I needed it most. I knew that my husband was going through so much himself, so I turned to these confidantes to express my fears and doubts, but more importantly, to share little triumphs and miracles we experienced along the way. Later on, I started seeing a therapist to help me process my feelings and ended up learning ways to cope and reshape the circumstances I found myself in. By having an outside source to talk to, I was able to leave each appointment with a literal spring in my step at times, feeling refreshed and ready to go back to caring for Grayson.

I learned how important it was to surround myself with positivity; whether that be people, music, movies, TV or social media. My wires were pretty frayed most days and I quickly learned that I felt more charged and refreshed when I surrounded myself with people who lifted me up, not brought me down. I turned to music that made me smile, comedic movies and sitcoms and, for the most part, avoided comparing myself to other people’s perfect-looking lives on social media. I didn’t always excel at doing all of these things, but I sure did try.

I had friends meet me at the hospital for a cup of tea or to go for a walk.  When Grayson was in remission and doing much better, I went to a concert every now and then. I even went on a couple weekend long silent retreats. Carving time out for myself didn’t come easy or seem natural at times, but I knew if I didn’t do those things for myself, my mental and physical health would suffer, and I couldn’t do all I needed to do for my husband. I was actually surprised how much Grayson understood when I’d leave him to do something for myself. There were times when I felt guilty, but I had to let that go. He had wonderful healthcare staff taking care of him, and a friend or family member at home if need be. Respite care agencies can offer breaks too if you need help and do not have a support system.  

My late husband has been gone eight years now, but I still smile every time I think of him. As a caregiver, I learned so much about myself, those around me, and what it truly means to live and love. I hope my reflections have brought you a bit of a light in the storm you may find yourself currently in. 

Truly yours,

Rachel Engstrom
Author of “Wife, Widow, Now What?” 

For more lung cancer caregiver resources, visit Lung.org.

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