Dear friends,
I hope my letter finds you enjoying the sunshine of summer! Our schedules have been busy with work, camp, gardening, car repairs, and dreams of a vacation. I want to share with you some thoughts not so summer-y, though. You know I am a caregiver. You know our family has Huntington's Disease. That is where I'd like this letter to go.
When talking to people about caregiving, I often share a story that is not my own. My mother-n-law set the bar high when it came to caring for others. To my middle-aged eyes she was invincible. She took care of her husband who was disabled, her son who was disabled, her other children, her grandkids, her church family and friends. But one day, in a raw display of emotion, she called me. I will paraphrase - “I just bought a brand new gallon of milk. James dropped it. Instead of cleaning it up, he shut the door of the fridge and came to get me, leaving the milk all over the kitchen floor. While he was coming to get me, Don opened the fridge, grabbed a Pepsi, and didn't even realize he was standing in the milk, he slipped, dropped the can of Pepsi and it exploded. They are both fine. However, I'm standing here watching a can of Pepsi spin and spew all over the walls, in the middle of a lake of milk.” She was laughing... and crying. I had no words to comfort her. I could see the image play out in slow motion in my head. I wanted to laugh at the insanity of it, too. The can spinning out of control in the spilled milk pretty much sums up caregiving. There is always something to clean up or fix. In this tick-of-the-clock, the joy of caring for loved ones was lost in a pool of spilled milk and soda.
I think that's why I miss her sometimes. I'd like to call her when I feel like my life spins out of control. Of course it is not always like this. The moments where smiles radiate and the 'best day ever' happens – those moments recharge our batteries and keep us going. The days where depression sets in, and anger begets angst, those days I imagine she would understand. I imagine she would take my call. And when I say I miss her sometimes, I do not want to sound unaffectionate. She has been gone seven years now. I do not miss her like I did in the beginning. I am okay with this. My grief and sadness wane with time. I crave for her to cheer-on the milestones of her grandchildren. But I do not want her here to see me as a caregiver. She is healed and experiencing a peace that passes all understanding. She did her time and I am grateful for her example.
Even on the good days the disease is still here. It never goes away. It haunts our futures. It robs us of our independence. It rips away our cognition. It stutters our speech and stumbles our feet. And I do not even have Huntington's Disease. I say “our” because we are all in this together. Caring for someone who is unable to wholly care for themselves affects the entire family. Through anguished tears, lamenting over time cut too short, the last thing I said to my mother-n-law was, “I'll take care of them.” But I knew I wouldn't, couldn't, do it alone. It takes a extraordinary group, armored in grit, love and compassion, to take care of each other.
The reach of a caregiver's selflessness is constantly educating others. They are usually leading by example. Others, including children, see the acts of kindness and want to help. I am not here looking for a high-five. I am writing this to remind you that in your life there is a caregiver. Someone who may not be in your family, but in your circle. Lift them up in prayer. Check-in on them. Take them a coffee. Send them a card. Try not to say, “Let me know what I can do.” It is likely we will not know, or not remember to tell you. I used to say that all the time. Now that I am in the caregiver's shoes, I understand it better and see this is not effective.
We belong to a support group for Huntington's Disease. We see caregiving in it's most natural state. There are days where your sanity does not show up for work. You just dig in and do it. It is not easy or fun. There is a lot of spilled milk and raw emotion. A caregiver friend once reminded me so poignantly - “You know they wish for time off, too, from the disease. We want a break from caregiving. But what they wouldn't give for a moment off, a day off, a weekend off, from the disease.”
I carry this thought with me. Not going to lie, it hurt a little. I had not put myself in their shoes for awhile. I was focused on the task of providing care and making sure we have more than a handful of “best days ever”. The gift of grace and mercy is a blessing on both sides of the situation.
I appreciate you all reading my letters. Next time, I will get back to the summer-y fun. Life is such an amazing gift, and being a caregiver doesn't change that. It only makes it more meaningful.
Your friend,
B
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