I frequently speak to caregiver and support groups, many comprised of the loved ones of someone with a chronic illness. My message is always the same— to be a good caregiver you must first take good care of yourself. (For details, please see yesterday’s post.) I’m confident and comfortable speaking to this subject in this way, because I learned much of what I share through personal experience.
Like most parents, I spent the better part of two decades raising and caring for my children. Filled with joy and laughter, fraught with potholes and pitfalls, and providing all the wonder and glory of family, that experience did not fully prepare me to care for another with a chronic illness.
When parenting a growing, healthy family, we experience a definite beginning and anticipate a foreseeable end. I know. I know. I can hear all my women friends saying, “A mother never stops worrying about her kids…feeling responsible for her kids…taking care of her kids…” But the fact is, in a healthy relationship, we maintain a lifelong connection to our adult children; but we reach a point of understanding the difference between that which is theirs and what little remains ours. When caring for a chronically ill child, or sibling or parent for that matter, the paradigm completely shifts.
Chloe and Michael, the two of my children with bipolar disorder, were healthy and happy and progressing toward all the goals we hope for our kids when, at age 17, they got sick. By that time and age we’d made significant progress together—each of them toward independence, as I anticipated a different stage in life. It was shocking, to say the least, to lose my independence when they again needed my full-time care. I went through a literal period of grieving while coming to terms with our new reality.
Just a few years later, my sweet mom experienced the same process of grief as her mother, my beloved Gram, developed Alzheimer’s.
Initially in denial, we each said similar things.” This can’t be happening.” “This is not going to happen.” “I will fix this.”
When denial no longer served us, anger took its place. “Why me? It’s not fair!” “NO! NO! NO! I won’t accept this!”
As the futility of that approach became apparent, we began bargaining, “I know I can fix this. Just let me figure it out.” “I’ll do anything, just make them well again.”
And then, when it was completely clear that our realities had truly morphed, the sadness and loss enveloped us and depression set in. This was also when the soul-searching began, the refiner’s fire got to work. It’s a painful place to be, but it can be transitory. We can move through it. We can find the beauty and blessings of the next stage.
In the end there is acceptance. We learn that it’s going to be okay. We can live with, even thrive in, circumstances vastly unlike those we thought we required. We can learn a new way of living. We can prepare for what we must do, and we can do it. We can release unfulfilled expectations and embrace what is.