To Be or Not To Be (A Caregiver): It Is Not An Option

Six years ago, my wife was diagnosed with Early Onset Alzheimer’s. 

Like everyone else who is faced with a family crisis, we had no choice but to embrace the news and figure out how to deal with it.  My wife, Eva, and I have two children.  At the time of her diagnosis our son, Jonathan, was a sophomore in college and our daughter, Leda, was a senior in high school.  While we are a strong family, the truth is that everyone needed to process the diagnosis themselves, in their own way.  And the ways in which we did this were not only surprising, but inspirational.

We all went through the many stages of grief, but as we each came through the final stage, we responded in different ways.  After a few months of reluctantly coming to grips with Eva’s illness, we finally accepted it and started looking for ways to help and support each other while we figured out how best to deal with the situation.  I adopted the motto “Today is the best day of our life” because I knew we needed to celebrate everyday while never losing sight of the reckless abandon and relentless impact the disease would have on my wife.

My daughter was living at home when my wife was first diagnosed and I think the situation was particularly hard on her.  When she left for college, she knew that I was being left alone to care for my wife and that she could only provide support from a thousand miles away.  I am fortunate to have smart, industrious children and my daughter put her energy at school toward finding a way to provide “support from afar.”

This ultimately led her to apply to a program on entrepreneurship at her school, Colgate University.  She was accepted into the program, which turned out to be a turning point in her life.  Leda saw the challenges that I was having as a caregiver and she started thinking about new ways she could help.  Ultimately, she identified that there was a significant amount of technology in the marketplace that could help a caregiver, but it was not easy to find.  So, she embarked on a journey to create a company to help caregivers find technological solutions that allowed them to be better caregivers; and her company Alz You Need was born.

Over the next five years, my daughter took this simple concept and turned it into a viable company that helped caregivers identify their biggest challenges, and then make them aware of technology-based solutions that could help them.  These solutions included readily available items like Key Finders, to new technology like Bluetooth driven prescription bottles that remind you when it is time to give medication, to online meditation apps and virtual companions.  Along the way, because of her youthful approach to problem solving for senior care issues, she became recognized as an opinion leader within the assisted living community and was regularly asked to speak at national conferences. And in 2018 she was voted as one of the top people under the age of 40 who were making revolutionary contributions to the senior care industry

Aside from the pride that I felt as a parent watching their child excel, I had the opportunity to serve as a testing site for many of the products.  Some of the products worked well for me, and others didn’t, but through trial and error I found the right mix of products to help me become a better caregiver; providing better care to both my wife and myself as a caregiver.

My son, Jonathan, on the other hand became my sounding board and the voice of reason on my shoulder who held me accountable to accept the reality of our situation.  I believe that as a caregiver for a loved one, we slowly become accustomed to the unthinkable as we normalize and deal with the reality of day-to-day care.  Jonathan took on the responsibility of getting me to accept reality and internalize what my wife needed from an outside perspective.

Fast forward six years and we are still caring for my wife.  It has gotten harder, and we are at a point where Eva needs more support than I am capable of providing her.  But while her situation is nothing short of awful, it has been rewarding to see how my kids have responded to their mother’s condition and how they have embraced a bad situation and risen above it to create opportunity and grow as individuals.

No one promises us that life will be fair, but as with any negative situation a significant amount of “good” shines through the bad and I personally believe we have an obligation to our loved ones to get past the pain and focus on these positive outcomes.  Laughing at a time of ultimate sadness can be a first step to honoring the life, love and sacrifices of our loved one and honoring ourselves for the sacrifices we have made. 

Through this journey I have learned that “caregiving” is not just about physical care, but it is also about moral support for me, my wife and my family.  And it is about making sure that the legacy of my wife and her boundless optimism don’t get lost in the day-to-day events forced upon us as we travel on this journey with her.

So our situation is clearly a sad story, although it is far from unique, but it is also a positive story that demonstrates that the whole (our family, friends and organizations like the Alzheimer’s Association) is stronger than each of us individually.  And this is so important because caring for a loved one is a sad and, more importantly, a lonely journey no matter how much help you have.  My kids have shown me that even with all the sadness we have the ability to not just make a bad situation tolerable, but to turn it into a springboard to create positive change and positive memories.  My wife and my kids are my heroes and for that I am so very lucky.

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