For many of us as caregivers for our loved ones with dementias and Alzheimer’s Disease, we choose to enter into the agreement to care for them willingly, without any compensation (we don’t expect it), aware that, in the majority of situations, we will carry the responsibility with little to no help from others and that it’s a lifetime 24/7 obligation that we’re inextricably bound to until our loved ones die.
We also enter into an implicit ethical agreement with our loved ones when we assume responsibility for their care. We promise implicitly that we will be honest and trustworthy, that we will be supportive, that we will be comforting, that we will be loving, and that our loved ones will want for nothing.
As our loved ones with dementias and Alzheimer’s Disease – parents, grandparents, etc. – did for us when we were babies and children, we promise that, with as much equanimity as possible, we will bear the burdens, carry the worries, handle the vacillations of change, and never abandon them.
The way I always look at this is that our loved ones (our caregivers) when we were babies and children didn’t know what they were getting into. They could not have possibly imagined or dreamed the things we would say, we would do, and sometimes the trouble and mischief we could find without even trying.
And, yet, for most of us, they hung in there with us, even though it was sometimes hard, sometimes maddening, sometimes frustrating, and sometimes almost unbearable (especially in the teenage years). They didn’t put us away some place, complain about the fact that no one in their families was helping out, or scream and rant and rave about us to other people (well, maybe they did to our friends’ parents when they were alone and traded horror stories about all of us, but we never saw any of evidence of that in their treatment of us).
By agreeing to be caregivers for our loved ones with dementias and Alzheimer’s Disease, we agree to do for them what they did for us. To complete the circle of life as we switch roles with them as they begin their exit from the stage of life.
How well are we living up to our agreement in all the areas that we agreed to?
Sometimes it’s necessary to just step back and evaluate the agreement we made, why we made it, and whether we are fulfilling the terms that we agreed to.
I know these diseases take a heavy toll on more than just our loved ones. I walked this journey side-by-side with my mama for several years, at first not realizing fully what Mama was experiencing, and then once I did, dealing with it and Mama according to the terms I’d agreed to.
I had my moments of anger, frustration, impatience, and fear, but overwhelmingly what I experienced was fierce protectiveness, deep compassion, strong empathy, and unconditional love. No matter what I was going through, I knew what Mama was going through was worse. The more fragile her own position became, the stronger mine became to be her comfort, her safety, and her rock – even if, at times along the way, she wasn’t, because her brain was betraying her, able to recognize that.
It was never about me. It was always about Mama. Keeping that at the front of my mind and heart at all times helped me be there 100% all the time to do whatever needed to be done to help her.
This is an imperative mindset for us as caregivers. It’s a rare mindset because it has largely disappeared in the general population that has wholeheartedly embraced the “it’s all about me” mindset.
We live in a society that has become increasingly self-absorbed, self-centered, selfish, and whiney when even the littlest of things don’t go our way. We live in a society that is easily offended and gets hurt feelings on the turn of a dime, that is quick to give up on things and people when the going gets a little rough, that is all too ready to walk away from anything that poses a threat to our comfort zone or might require a little extra work to sustain. (The irony is that this same society expects from us the things it is unwilling to be, do, or give.)
But, as caregivers, we have chosen to take the road far less traveled by. The one that says we’re in it for the long haul. The one that says our skins are thick enough that we learn not to take the effects that our loved ones with dementias and Alzheimer’s Disease exhibit personally. The one that says we love and we care to the end. The one that says we never walk away.
It’s not a road that many are willing or able to walk. But for those of us who have walked it and are walking it to the end, we find that the rewards and the lessons and the love we acquire as part of the journey are priceless. And our loved ones find in us relentless champions, unsung heroes, faithful friends, and beloved spouses, children, grandchildren, nieces and nephews who show them we love them by who we are and what we do.
So let’s never forget the promises we made, the pledges that we made, the trust, integrity, and honesty that we committed to be worthy of when we chose to care for our loved ones. Always remember that they are counting on us to honor those and if we fail them, then who will step in and fill the gap?