5 Years Later, Reflecting Back on Life in the Eldercare Trenches

Today begins a “week of action” for the bloggers who are part of  AARP’s caregiving “kitchen cabinet.”  Not only do I deal with eldercare/family caregiving issues professionally as a work+life strategy consultant, but I have been a caregiver myself.

As my call-to-action, I wanted to go back and reflect on how I felt in August, 2007 as I began to emerge from the eldercare trenches having just lost my mother to an 18 month fight with lung cancer.  I had written a blog post entitled “Mom’s Peaceful Passing–Eldercare True Confessions.”  Reading my words today, I am transported back to the exhaustion, complicated feelings and hard realizations.  But mostly, I am proud.

I am proud of my mom.  Proud of my sisters and even proud of myself.  My mom brought us into this world, and we can honestly say that we shepherded her through her final transition in as loving and peaceful a way as possible.

But we were lucky.  My sisters and I had very flexible jobs. My mother had enough money to get the care she needed (assuming it was available, which is a whole other issue.)  And it was still hard. Harder than I remember.  Clearly, time has softened the edges of the experience, but it hasn’t dimmed the insights and passion that continue to inform my work in this area.

Were you a caregiver in the past?  When you reflect back on the experience today, how do you feel?  What do you wish others knew that you may have learned the hard way?  Here is my story from August, 2007.  I would love to hear yours.

Mom’s Peaceful Passing–Eldercare True Confessions

My mom peacefully passed away on July 6th after waging a heroic eighteen-month battle with lung cancer. I want to thank everyone who has sent messages of support and shared their personal stories of caring for an adult they loved. It has meant so much to me and I thank you from the bottom of my heart.

Over the past six weeks as my sisters and I provided 24/7 care until her death, then arranged my mother’s funeral, I had no capacity for blogging. But now, two-weeks into my “re-entry,” I would like to share some personal observations about eldercare. My experience has radically changed how I will professionally approach this major work+life transition going forward.

I had to save my true confessions about eldercare until after her death, because reading them would have been too painful for her. Because the truth is that eldercare is one of the most difficult things I have ever done.While I would do it again in a heart beat, it’s a responsibility that exacts a tremendous toll—physically and emotionally—straining even the most well-thought-out work+life fit.

The best way to describe what I mean is to compare eldercare to working after having my children, who are now nine and six. (Note that for the purpose of this comparison, I’m assuming that the children do not have special needs. To learn more about those unique challenges, see guest blogger, Linda Roundtree’s, excellent posting).

Like eldercare, becoming a parent is a huge transition. In both circumstances you are often sleep deprived and have absolutely no time for yourself. But, in general, caring for your child is:

• Happy and rewarding;
• Based on a relatively predictable curve of development with care readily available, albeit for a price; and
• Controlled by you. You say how, when, and where the child will be cared for and the child must comply, willingly or unwillingly.

In contrast eldercare is sad, unpredictable, and rarely, if ever, fully controlled by you. Let’s briefly look at each aspect of this comparison.

Sad

Even at its most difficult, caring for a child always involves the possibilities of the future. Caring for an aging or sick adult is about loss. Loss of the vibrant person. Loss of their pain-free existence and control over even the most mundane activities of life. And, ultimately, death. Because the work+life fit equation is based on time and energy, the pervasive sadness of eldercare is an energy drain that doesn’t exist with child care.

Unpredictable

Yes, my children will unexpectedly wake up sick and not be able to go school, we’ll have a snow day, or my nanny will be running late. But for the most part, things are pretty predictable. Not so with eldercare.

While every child is unique, there is a general developmental curve they will follow. With eldercare, there is no such curve. Every adult’s medical, family, financial, emotional, and community circumstance is completely unique. And there is a shocking lack of affordable care. For the most part, unless you are very poor, very wealthy, or have excellent long-term health care, you are on your own. In fact, I don’t think most people, or employers, have any idea just how on your own you will be when dealing with eldercare.

In our case, my mom was single so my sisters and I were her primary caregivers. Thankfully, she had a wonderful community of friends and enough resources to support the care she required. But even so, we had to provide a tremendous amount of care, because there are many things you still have to and want to do yourself. And, both my sisters and I had a great deal of job flexibility. We couldn’t have done it if we didn’t.

Even with the flexibility that comes from working for myself, trying to plan my work around my mom’s care was almost impossible. I just had to take my best guess, and my best guess wasn’t always accurate. I probably should have said “no” more than I did, but I just wasn’t sure what my capacity would be. (Success Blog posting).

As I recently explained to a friend, it was like holding my breath for the last 18 months, always waiting for the other shoe to drop, which it always did at the busiest time for work. Toward the end, when the level of unpredictability accelerated, I began to understand why people would be forced to give up working. The ability to plan anything beyond just making sure your loved one has what they need is almost impossible.

Not Being Fully in Control

Now perhaps I was naïve, but I failed to consider the fact that my mother would have very strong ideas about how, when, and where she would be cared for. Very often those ideas didn’t coordinate with what my sisters and I thought would be best for her and, perhaps, most convenient for us and our work+life fit realities.

It was just one more unique element of eldercare that often added more time, more worry, and more stress to the equation than anything I’d experienced with child care.

As much as I consider my children’s wishes and well-being, their father and I have the last word. When your parent is mentally lucid which my mom was until three days before she died, your ability to dictate the details of care are very limited. In fact, we came up with a mantra, “hey, it’s her journey,” just to help us not worry as much when we disagreed with her choices, which was often. But they were her choices.

I look forward to using my 18 months in the trenches learning first-hand about the unique challenges of eldercare. As a school psychologist who dedicated her life to helping others, my mom would have wanted that. And now, as she would say, “I’d love to hear what your experience has been.” Let me know. And it’s great to be back!