The reality of caregiving is that many of us are forced to make difficult decisions on a day to day basis.
Sometimes, we need to decide if we should argue our reality against the reality of someone with Alzheimer's disease. Sometimes we have to decide whether we should encourage food or fluid intake to the point of forcing a loved one to eat or drink, or if we should step back and hope the right thing, whatever that may be, happens. Sometimes we have to decide what is "enough," when it comes to medical care for someone who is dying. The later of these decisions is one of the most painful decisions a family caregiver may ever have to make.
Even though I was a primary caregiver to multiple elders over the course of two decades, I was fortunate in that I never had to make a life or death decision on the spur of a moment. While I did have family members who were close enough to contact, if only by phone, there are situations where split-second decisions must be made. I'm grateful I never faced such a reality. However, I sometimes did live with that possibility, and was aware of it.
Recently, in reviewing some material from my prior speaking engagements, I came across a reminder that caregivers often must consider life and death decisions during the full span of their care journey. The words below are from notes I took for a speech I was to give to a group of colleagues, shortly after my mother took a serious fall. In reading it, I felt my caregiving pain anew:
"It's eleven thirty p.m. June 28th and I'm holding my mother's hand as the ER doctor sutures her head. She's split it open from forehead to back, clear to the skull. She's frightened. She doesn't remember the fall. She doesn't remember the ambulance ride. She doesn't remember any of our other trips to the emergency room, either.
Mom's got cancer, among other things, and I worry that she will die a slow and painful death. But she could have another year - maybe - of semi-decent quality life in her yet. This time, after I get her back to the nursing home and go home to try to sleep, I think again -
What if this is "it"?
Did I do everything right?
Can a decision I made or will be asked to make save her from a worse death, or sentence her to one?
If they call and say I must decide her fate NOW, what do I say?
I know I'll have help in the morning, but in the dark of night, I'm feeling alone. Am I playing God if I tell them to bring her out of dangerous situation, only to let her slowly die from cancer? Or am I playing God by saying I'd rather she died now than suffer a different fate?
When do I let my mother die?
I pray I don't have to make that choice on a moment's notice. It seems like a no-brainer, the decision not to drag out a life made worse by one more medical issue. Easy to say. Hard to do.
This is my Mom.
Fortunately - or not - I really don't know - she is coming out of this with her mind a bit more scrambled, but no life or death decision to be made. This time."
One reason that family caregivers share their stories is so we can help each other remember we are not as isolated as we may feel. We are not alone. If you are facing tough decisions, remember many of us have been in your shoes. Blessings to you. We do understand.
Published On: December 11, 2010