A Caregiver’s Caregiver

Colleen Kavanaugh headshot

If you feel like you’re wading through quicksand sometimes, here’s Part Two of my interview with Colleen Kavanaugh of The Longest Dance. Relatable and compassionate, her experience in helping other caregivers find solid ground offers a sense of hope that you can see this caregiving journey through and come out stronger on the other side. It’s reassuring to know that’s possible. 

What is your advice to someone who is new to this journey? Get help. I like to use the example of hospitals and other care facilities to illustrate that it takes a village. These communities have a staff of hundreds to handle the care of each patient or resident. One person isn’t assigned to care for another. One person handles a component of care. And, that person doesn’t work 24/7. In whatever way you are able to supplement care or hire out for certain chores and responsibilities, do it. Have experts you can call on for certain issues like legal and financial matters. Think of your caregiving role as a manager building a team of support for you and your caree. Try to remember that you don’t know what you don’t know. But know that you know enough to know you need help.

It’s easy to lose our other selves when we’re caregiving.  Share something about you that is unrelated to the caregiving role. Being at the beach, any beach, is my happy place. And I love eating fabulous food. In fact, I am doing this interview with you while waiting in line at Franklin Barbeque in Austin, Texas. While I wouldn’t have flown to another state for barbecue as a caregiver, I did allow myself to rent a beach town’s teeny tiniest bargain rate cottage 8 blocks from the ocean that was just a 20-minute further drive to my Dad, who was at that time in a nursing home during what would be his last summer. I was able to be with him daily, but return to my happy place and give my son a bit of a vacation. I share this story to show that there are ways to creatively sneak in your own joy during what can be the most difficult time of your life. Maybe it’s a class that meets at a time when you are able to get care coverage, or a two-night getaway when a sibling comes to town and can stay with your parent or loved one. Even just a quick manicure before you head into the grocery store can make a difference.

Artists aren’t the only ones with creative gifts. For some, it’s painting or music. For others, it’s making people feel comfortable or cared for. What’s your gift? Maybe a bit like you, Judith, as a “hyper-responsible oldest child,” I have a gift for being hyper-organized. I love connecting with others, and when that connection comes with the opportunity to help them organize their desk, sock drawer or now – medical records, I am in heaven. I am invincible with a well-crafted list and was known at my parent’s doctor’s offices as, “That girl with the clipboard.” Inefficiency drives me wild, and as you can imagine, the unpredictability of caregiving tested my patience like nothing else. Organization was truly my best friend. Don’t underestimate the power of your natural gifts to assist you during your time as a family caregiver! Reflecting back on my experience, if I had to do it all over again, I would tell myself each day to:

 

  • Acknowledge your role
  • Prepare as best as you are able
  • Look for the light within the dark – it is there
  • Subversively sneak in joy whenever and wherever you are able
  • Lead your team to support you and the person for whom you care
  • Use your natural talents to help in your own uniquely empowering way

And know, above all else, that you’ve got what it takes.
What doesn’t kill us makes us stronger. I am living proof, and you will be too!

 

 

What’s In A Name?

Colleen Kavanaugh super-denier

For my guest, Colleen Kavanaugh, being a working mother, a daughter, and a partner are a few of the identities she’s comfortable with. But, when taking on the heavy responsibilities of advocating for a mom with Stage-4 breast cancer and a dad with Alzheimer’s and Parkinson’s, she wasn’t quite ready to add “caregiver” to the list.  The result was a situation where she ended up doing everything on her own, with no safety net of support. Sound familiar? Founder of The Longest Dance , both a certified caregiving consultant and a certified dementia communication specialist, Colleen is also a daughter who has walked a mile in many of our shoes. I’m so pleased to share her story and the powerful lessons she’s learned in this first of a two-part interview. 

What were the circumstances in which you found yourself in the role of caregiver? This question always puts a line from The Talking Heads song, Once In A Lifetime into my head, “And you may ask yourself, well, how did I get here?” During my decade of caregiving I asked myself that question, in David Byrne singsong cadence, over and over again. Caregiving was certainly never an activity on my list of things to do, that’s for certain. I look at my tenure as a family caregiver as what insurance policies call an “Act of God”, like a storm that you hear happening to other towns but never yours. My parents were diagnosed with diseases and needed care. Period. No choice. No picking what is behind door #2 after door #1 had been opened. To reductively sum up my caregiving storm in one run-on sentence…. I was a 34-year old newly divorced parent of a toddler, working full time when I began caring for my mom who was diagnosed (and lived a prognosis defying 3 years) with stage-4 breast cancer and within 9 months of her dying, I began caring for my widowed dad who was diagnosed with Alzheimer’s and Parkinson’s diseases, all the while attempting to live my own life (which now included a new partner and his two children) while dismantling my parent’s very complicated lives.In the midst of it, not unlike being in the middle of a catastrophic storm, I was unable to control the forecast (the diagnosis), but only able to control how I dealt with storm prep and clean up.

What was the most difficult part of caregiving? Was there a positive side to it? If so, please describe. The most difficult part of caregiving, for me, was acknowledging that I was a caregiver. This denial was detrimental to my getting the support I should have gotten in order to manage the stress that I wore around my neck like an invisible barnacle. Even during the times when a parent’s care consumed my life, I was still a mother, partner, daughter, employee, volunteer and active daydreamer. I think part of denying my role was that I ultimately did not want to be doing what I was doing. And what I was ultimately doing was watching my parents die from terminal, degenerative illnesses. Who wants “Death Sherpa” on their business card? I certainly didn’t. That said, the flip side of my business card would have read, “Life Igniter” because, amid the intensity of the worries, endless to-do’s, and perpetual grieving, I truly learned how to live. I met death close up and it whispered to me that I needed to make the most of the unknown time I have left. The intensity of emotions and situations that exist within caregiving are a nonstop roller coaster ride of grueling climbs to a pinnacle that once reached, hurl you off the top into a descent that you can not prevent, control, or escape. It’s nausea inducing at first but slowly, over time, it becomes your new normal and you are no longer getting motion sick at each free fall (or in a caregiver’s case, each health decline, hospital visit, 911 call, or middle of the night crisis). When my caregiving ride was finally over, I knew I could not just walk away from all that I had learned. If an ounce of my experience could be of value to another family caregiver, I needed to share it and give others the practical support and encouragement I so often wished I had, but didn’t know I needed.

 

Please come back for Part 2 of our interview on Friday, April 28th. In the meantime, be sure to check out Colleen’s website to learn more about the services she offers to caregivers, and sign up to receive some valuable (and free) organizational tools for making life a bit easier.

A Recipe for Caregiving

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A giving heart
A very large purse
Strength you didn’t know you had
Enough humor to get you through tough times
Headlights and Dramamine for this roller coaster ride in the dark
Compassion – not just for others, but for yourself
Confidence that you’re doing your best in situations where no easy answer exists
A nickel for every time you have to keep your mouth shut to keep the peace
A belief that you will be ok, no matter what

What would you add?!?