My dad finally passed away early this morning, which, of course, causes that same “grielief” we felt when Mom’s time was up a mere six months ago.
His decline was so agonizingly slow, marked by such infinitesimal notches downward. Every time we thought he was making the step that would mark a turn to The End, he would level out, his body continuing to chug along. Time and again, even as his corporeal self withered and the person we suspected was still inside slowly disappeared, that body kept going.
Seven months ago, Tim and I made plans for a long, tropical vacation in early February. Because I was away when Mom passed (my sister left to manage in the immediate aftermath), she and I discussed this vacation after that experience, agreeing that there was No Way He Would Still Be Around By Then.
As the months slowly passed and it seemed that the ground itself might have to rise up to swallow what was left of him before he finally took his leave, I began saying, only slightly jokingly, that it would probably happen while Tim and I were even farther away. We joked about it. But, amazing, indescribably awesome sister that she is, she told me that we had her blessing to stay for the entire trip if it were to happen on her watch.
Lo and behold, here we are. She kept me apprised as he took what marked his final turn earlier this week, and through his exhausting descent over the past few days.
She and her husband are living angels, taking turns being with him, administering his comfort meds every other hour, 24 hours a day; singing to him, stroking his hair or holding his hand. Letting him know he was so loved; what an incredible father he was to two adopted daughters whose lives were so shaped by his quiet guidance and support.
As grueling as this past four years has been, I don’t think I’m speaking just from the emotion of this moment when I say it has also been the most meaningful four years of my life. It has brought my sister and me, who were fairly close before, so much closer. It has made me appreciate my life in ways I might never have, had I not been yanked out of my “normal” and tossed around in the swirling currents of parental dementia.
At a moment when I’m vacillating between grief and relief, between surprising upwellings of tears and smiling at the kindness of friends and family, the umbrella over all of it is my gratitude: to my dad for a list of things that will require a separate writing session, to my sister and her husband, whom I feel with every breath I’m drawing today, and to the Universe itself for putting us through this transformative disease.
I’ve always joked with friends about how my parents have been
preparing me for their death since I was five.
In fact, as a little girl, my mom and aunt would playact that Mom had
fallen ill and couldn’t get up. While Mom
lay on the living room floor, my aunt would yell “Help, Help! Nancy call the
doctor: Mom needs help!”
Using my trusty red plastic dialup telephone strategically placed on the coffee table by where Mom was lying, I’d dial 911 and tell the make-believe doctor to come quickly as Mom was dead on the floor and needed help, NOW! My aunt would run to the front door and clang the long brass tubes that were our doorbell, alerting me that the doctor had magically arrived at our front door for me to let in so he could revive Mom. Of course, I’d get praised for a great job while they went off to laugh, relax, and share a smoke together.
As I got older, I was told where critical documents were kept in file cabinets; names, phone numbers, business cards, what local banks we used, even personal introductions to the family attorney, accountant, financial advisor – and what was in each account. I got pop quizzes on all of this. At the time I thought this was a bit overkill. Looking back, I understand how life’s tragedies, such as the passing of their parents, and later my sister at age four made it imperative to them that I be able to carry the torch, on my own, if necessary. As the eldest daughter, I was prepared at an early age to become the caregiver they now need.
Over the last nine years my sister and I have gone through a
steep learning curve. We’ve learned that
nothing can totally prepare you for what’s needed to physically, mentally, or
financially to take over the care of a parent or loved one.
I first wrapped my head, heart, and hands around this idea
(which later became a substantial and complex project) after my husband drew my
attention to small changes in Mom’s conversations. Later,
after utilities were cut off for failure to pay bills – which was always Mom’s responsibility,
while Dad ran the business – reality and the need for action kicked
With their first move into Assisted Living (this move was
their choice as they both said “we don’t
want to be a burden on you kids), Dad called me in a panic five days from their
move-in date. He’d been blindsided by Mom,
thinking they had two more months to go. I jumped into the deep end, learned to swim, and have been doing laps ever
since. Doing the backstroking has become
much easier with practice.
We who care for our parents have learned to manage in our
own way – often only with subtle differences.
My approach is to take charge of ‘Mom & Dad, Inc.’, complete with a
team of caregivers who are with them 24/7.
Doing this work long-distance isn’t easy, and Mom, Dad, and our amazing
ladies are always on my mind, and in my heart.
There have been some bumps and bruises along the way for all of us, but
I managed to acquire some life and business lessons along the way.
I’ve shared my journey with friends, family, and strangers. Having heard my story and faced similar
situations, many have asked themselves: “What would Nancy do?” As an entrepreneur I’ve learned much from walking
alongside Dad at his factory and getting to know his employees, customers, and
industry colleagues. Without knowing it,
he and Mom have been the cartographers for my own exploration and
learning. Watching them flourish (or
sometimes deteriorate, but they always spring back) from my decisions, I manage
Mom & Dad Inc. like a well-oiled enterprise: overseeing their welfare; hiring
and firing various ‘’professionals;’’ identifying vulnerabilities; and removing
the weakest links quickly, in medical, legal, financial, daily care, and even supply
chain services. All the while, I’m
keeping a focus that this is personal for
them, as well as for my sister and me.
This has become my nature.
Running a business and advising large company leaders, CEOs, and boards
is a walk in the park compared to managing the business of being a caregiver.
Working this way has helped me keep everything in perspective without
becoming an emotional wreck – although I’ve had those moments too.
My commitment to doing what’s good, healthy, and right for Mom
and Dad has become an obsession. Like
the service that I deliver to my corporate clients, I give the best guidance
and support to others who become overwhelmed by what it takes to be a caregiver:
courage, character, and confidence to keep your head high when the day presents
dark clouds and fears creep into your mind.
This is a tough road for anyone. Society shuns the elder caregiver, not knowing what to do with and for us. It’s why I’ve started sharing options, opportunities, and positive outcomes that have helped others in a new Facebook group called Eldercare Success!
Through this group, we caregivers come together, confidentially, to help, support and take some of the emotional, physical, and financial fear out of our own hearts. That’s the mission for me and others in our Eldercare Success group. We’ve grown over these few short months, now that word has spread that this is a safe and trusted space. In fact, we just launched, Eldercare Success UK. There are no borders when it comes to the challenges we face as caregivers. I expect that there will be many more Eldercare Success Groups in the near future.
If you, a friend, or family member needs a safe, trusted, empathetic and valued place to ask for and give support to others, come on over and join us. You’ll find joy in the little things, and a way to relieve stress and frustrations as we work to provide the best for those we love. As I say in the group: “Together We Are Stronger!”
Walking at your side!
About Nancy May:
Nancy May, CEO, The BoardBench Companies, and noted in Forbes as one America’s governance experts, knows the ins and outs of challenging board environments. Nancy hosts the Boardroom’s Best podcast, which was recognized among the top 25 business podcasts to listen to in 2018. She is a regularly featured contributor to the CEO Forum Magazine, and is a frequent guest speaker on corporate boards, governance trends, and how candidates can “crack the code” that gets you to a seat at the table. She has been a guest lecturer and presenter for numerous national and international business and professional organizations and universities.
Ms. May has been recognized by clients for her innate ability to quickly identify key action points and resolve complicated boardroom and business challenges impacting corporate governance and performance. Her skill and insight into many different industry environments comes from her long-term, diverse experience with many companies from rapid-paced start ups and IPOs, to broad complex corporations and institution.
She also freely applies her skills to the needs of others like herself. In addition to her work in the boardroom, she has been the primary guardian and caregiver for her elderly parents for more than 10 years. Openly sharing some of the most challenging issues that caregivers confront, she has become a “go to” for many executives and friends who find themselves physically, emotionally, and professionally overwhelmed. Nancy’s strength and advice, has been a grounding force for many, includng that of her own family and an ever-expanding group of caregivers.