riting has always been therapeutic for me. When I'm faced with life wreaking havoc on me, I write.
Three weeks ago my mom's oncologist informed us that cancer cells had returned to her body and a more aggressive form of chemotherapy is required. My dad is on oxygen for 18 hours a day and a nebulizer 6 hours per day due to his condition of COPD. He takes a host of meds and is stubborn as a goat at times.
I'm learning to embrace my role as my parents' caregiver, but the more difficult task for me is learning how to take care of ME while taking care of them.
Nearly everyone involved in caring for aging loved ones is experiencing grief. Often, however, we're not aware of this grief. We have a parent who used to be strong and capable begin to ask for a little assistance. No big deal, right? We're happy to help. But underneath, often unnoticed, there's a knot in our hearts. We're grieving the loss – the loss of function that made our parent need to ask for help. Weren't they the ones who helped us? Weren't they the ones in charge?
Generally, these changes are subtle, the grief sneaky. I remember watching my parents age in the normal fashion. I'd occasionally look at them and be startled by the realization that they were aging. But that was all I acknowledged. I never intentionally thought about loss and pain. It dwelled beneath my consciousness.
Up until now. As my sister and I walk this journey together, taking turns transporting our parents to doctors appointments, ensuring their meds are filled and they're taking them appropriately, cooking and delivering their meals and fighting the insurance providers to pay for what is covered, I find my own energy exhausted and depleted. My mom was officially diagnosed with CML leukemia in January 2010. We have experienced her nearly dying from the chemo meds and a different mom than we always knew. During the last year and a half as a patient of a clinical trial, she has thrived. But now another setback, not just for mom but for the family, to endure. Sunday, mom asked me to help her write out her will, something we'd spoken about when she was initially diagnosed but never proceeded to do.
Today, while at mom's house she asked me for the papers and to help her do the will, which I obliged. She also asked me to point out which items in her home that I wanted to receive upon her death. I quietly and hesitantly named a few items and she bequeathed them to me on paper. She then asked me to follow her downstairs to her basement and pointed out smaller items she wanted me to load in my car right then. Wow! that was a telling moment for me. I can't show my sadness and all of the other myriad of emotions I'm feeling in front of her so I go along with what mom wants me to do, realizing this is inevitable. Today is a little harder to "fake" my strong facade because I received news that one of my aunts is on life support and not expected to recover. So I try with all of my might to dig deep and suck up what I call "putting on my strong front" of emotions and move forward with hauling items to my car.
I've learned that there is a name for the type of grief I'm experiencing, something hospice professionals call anticipatory grief. This differs from what I call early grief. Anticipatory grief is more like the grief one feels as the death of a loved one nears and we start to grieve what we know will be their loss. What will we do without them? How will we keep on living? We are looking ahead to the loss we know is coming.
The early grief I'm speaking about is far more subtle, and can be horribly damaging to our mental and physical health if we don't address it. It creeps up on us as the small losses build – both those of our loved one and those of our own. For them it's a loss of function and independence. For us it's the loss of their independence, as well. Also, it's the loss of time for ourselves, time for our jobs, even time for our children. It's an insidious feeling, akin to – and often accompanied by – depression. It's a kind of grief that we need to identify and perhaps get professional help with, or at least the help of a support group. For if we live for years with this unrecognized grief, as we witness loss after loss before the actual death occurs, we will kill off a part of ourselves. Our physical and mental health may suffer irreparably.
The well of grief is deep. We need to watch so we don't drown under this sorrow before we even acknowledge it's there. We need to be reminded that we caregivers, too, are suffering. Yes, the grief before and after death is huge. But the subtle ache, as we watch the slow fading away of a loved one, is grief worth recognizing and bringing out into the open. Statistics say 30% (some indicate more) of the caregivers die while they are caring for a loved one. That is, before the loved one dies. Early grief is part of this dynamic. I've learned that we need to be a friend to ourselves and get help, before we become one of those statistics.
I'm sending out love, light, peace and prayers for all of us navigating this caregiver season of life. Continue to stay safe and stay well.