No Days Off for Caregivers

This is Susan’s husband Mark and this is my first blog post on Let Us Be Mermaids. Susan was my best friend and the love of my life. It’s been almost 11 months since Susan passed. I think of her every day, multiple times a day. When I wake and see she’s not lying beside me, on the drive home when my mind transitions from work to home, when I come home to an empty house, when I go to bed and I don’t see the flicker of the TV and the sounds of her favorite TV shows as I drift off to sleep.

I’d like to dedicate this blog post to Caregivers. Thanksgiving just passed and Chanukah, Christmas and Kwanza are right around the corner. For Caregivers there are no days off.

When Susan passed some people said “I had no idea about your wife”. I was fine with that because as a Caregiver, aside from close friends and family, you may not publicize the private challenges you’re going through. I also understood that there were many others like me who must go home each night to a sick child, elderly parent, spouse or family member with a debilitating illness or disease. For me it was that I went home for more than eight years to my wife with advanced stage breast cancer.

Early on I didn’t think of myself as a Caregiver, I just did everything I could to help Susan. What she was going through paled in comparison to what I was doing to help her. We were fortunate that Dana Farber had a satellite site about 10 miles away. She got most of her treatments there when she was first diagnosed with Stage III breast cancer. In the beginning it was a barrage of doctor appointments, chemo treatments, radiation treatments, surgeries and more chemo. Caregiving was a constant, but I was just doing what I could to help my best friend and love of my life. I wasn’t angry that I had to do this, I just felt terrible that Susan had to go through all of it.

When we were told Susan’s cancer spread and she was incurable Stage IV her treatment was moved to Boston, about 40 miles away. The barrage of doctor appointments, chemo treatments, surgeries, etc. didn’t subside, it was just further away. There were literally hundreds of appointments over the 8+ years. However, for Caregivers it doesn’t end there. After the doctor appointments, chemo sessions, surgeries, etc. caregiving continues when you come home. It’s doing what you can around the house. I feel lucky it wasn’t worse. I can’t imagine what it’s like to care for a loved one with a disease like Alzheimer’s, ALS or Multiple Sclerosis. I was fortunate to have two amazing children. Michaela and Max were mature beyond their years and were a big help. It was a team effort. Taking care of the children, cleaning, cooking, laundry….anything and everything I could do to make life easier for my best friend.

There’s also the emotional support. Susan said I was her “rock”, but to be honest she was the rock. Her positive attitude and refusal to be defined by cancer made it easier on the rest of us. There were many late night drives home from treatment where I’d say things to be positive, even though I didn’t believe what I was saying, but hoped it would help Susan. We had a lot of discussions that we never thought we’d need to have when we met 30+ years ago in college. We discussed everything from how to tell the kids about new treatments, her prognosis, her obituary and her not being there from me, Max, Michaela or her future grandchildren.

I think back about what I think I could have done better. There’s a certain level of guilt with that even though I think I did a pretty good job. What more could I have done for her, what did I do right or wrong in her final days to make her more comfortable?

Since 2010 this is the first time I’m not a Caregiver during the holiday season. To all the Caregivers out there, know that your loved one appreciates everything you do, even if they can’t say it or express it. Not all superheroes wear capes and you are a superhero to your loved one.

I don’t miss seeing Susan endure the effects of cancer and cancer treatments, but I miss our drives into Boston, I miss holding her hand, I miss our talks. I miss my best friend.

Photo courtesy of DeeLewisPhotography

5 thoughts on “No Days Off for Caregivers

  1. Not to mention that you and Susan were mentors for other breast cancer patients and their spouses while she was in the throws of cancer treatment. Also Susan’s open dialog and positive attitude and grace gave inspiration to so many…you have a remarkable family Mark! God Bless you. Jim and I think of you and your family often.

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  2. Mark, if I may call you that, your wife sounds like an absolutely beautiful (inside and out) human being with an incredible strength that obviously helped you and your children (as well as other friends and family) make it through her illness and beyond!

    I’m so sorry for your unimaginable loss and hope that the time you both had together and with your children carries you through to better, brighter days when you can loo up and know she is with you all ❣️❣️❣️

    Blessings,
    Lisa 🙏🏼

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