A normal day, caregiving style

Posted on March 8, 2014

Approaching The Final Destination. The attached article focuses on one caregiving journey that is coming to an end. Chris McClellan’s caregiving journey is coming to a close because his partner, TLO, is approaching his final destination. Recently, another blogger that I follow, who was the caregiver for her husband, Chuck, came to the end of her caregiving journey because Chuck approached, and reached, his final destination.

Each caregiver/blogger that I follow has said the same thing in almost the same words that echo how Chris describes the tenor of the day-to-day life of a caregiver: “I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that.”

Whether a loved one needs care because of cancer, as in TLO’s case, or Alzheimer’s, as in Chuck’s case, the lives of both caregiver and patient are forever changed once a diagnosis is pronounced. The 10-15 minute medical consultation in an exam room or a doctor’s private office thrusts the recipients into the as-yet-unknown world of living with a terminal illness.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years. — My father and my sister-in-law, both of whom died from Alzheimer’s.

My brother’s wife, Nancy, was diagnosed with mixed dementia when she was barely 65-years old. In the first article on my brother’s caregiving blog, he also characterizes diagnosis day as the day his life, and that of his wife, changed forever.

Normal becomes a shifting paradigm that can look different from month to month or moment to moment as a loved one’s disease progresses towards its final destination. Both caregiver and patient can’t recall – for one reason or another – what normal used to mean before the disease’s arrival in their lives. I know from personal experience with my father, that the caregiver truly can’t imagine life without caregiving – so all-consuming and life-changing is a fatal disease in ones life.

Normal? What does that mean? And in the midst of caregiving, you become aware that the only escape from this new and ever-changing normal is the death of the one for whom you provide care. What liberation! What freedom lies on the horizon!

No, that is not what the caregiver is thinking. He or she is focused on the here and now, because such focus is required in order to adjust to the shifting sands of normalcy.

But the end does come as it did with my father on October 13, 2007, with my sister-in-law on July 4, 2012, with Chuck in late February 2014, and as will happen with TLO once Chris and TLO’s journey comes to an end.

What we all would give for just one more day of abnormal normalcy with our loved ones.

But all journeys come to an end, and none of us would rob our loved ones of their final escape to a destination towards which their lives had been headed since their own personal diagnosis day.

Freedom from pain; freedom from physical and cognitive restrictions. Let it be.

This entry was posted in 21st Century Living, Caregiving, Community outreach, Family issues, Health & Wellness, Personal Struggles, Quality of Life and tagged Alzheimer's, caregiving, caregiving journey, Chris McClellan, mixed dementia, terminal cancer, The Bowtie Guy, vascular dementia.