A Caregiver's Post-mortem

Today marks one months since my father passed.  I've been flooded with memories.  Those bits and pieces of the recent past contain small seeds of self-discovery.  Things I didn't know about myself and why they are pouring over me now, I have no idea.  Perhaps  my mind now has a chance to sort these journal entries, to put them in some meaningful context much as a news department meets after a newscast to see what worked, what went off the rails.

In today's meeting with me, myself, and I, we reflect on that day leading up to my father's hospice care.  That awful day when the doctor delivered the news that "There's nothing more we can do. He has 3-6 months.  Here are your options."  I only had a day to absorb this news.  As I stare at my journal, I realize I had less than a day.  Actually, I had an hour to decide as a social worker recited the possible next steps.  My mind had a terrible time dealing with the phrase "nothing we can do" and yet the health care system demanded my presence in the here and now to move forward, their job completed.  The clock ticked.  Nursing home or family home?  I remember thinking this is a hairpin turn in my family's life while going 90 miles an hour?  This is crazy!

Sitting in the car in the hospital parking lot, some small voice from within helped me to focus on the news.  I knew the day would come, but it didn't help the intense shock at hearing the words.  Something inside helped me to process not what I had just heard, but what the future demanded.  First thing at the top of list -go home to tell my mother the news.  My hands shook as I gripped the steering wheel.  I told myself not to cry.

At home, I gently broke the news to my mother.  She understood. She's a real Steel Magnolia.  She had been there when her father passed.  My mother was only 17 years old.  Whatever decisions we made had to be in her best interest as well as my father's.  If we placed Dad in a nursing home (something he hated only two months before), she would insist on daily visits and winter lurked around the corner.  She'd give her all not to abandon her husband to the point of putting her own health at risk.  The answer to "Where" emerged as clear as day.  I never asked myself if I fit the role of caregiver.  I never put myself in the equation.

After running back to the hospital to deliver the news that Dad would be coming home, I needed to figure out just where in the house we'd put a hospital bed.  Mom and Dad's foresight must have very keen back in the day as they purchased a single floor house plan, but access to the master bedroom wouldn't work due to a tight turn from the hallway into the bedroom.  No good.  The living room had to be the answer, but where would I put the living room furniture?  I had no time to secure storage.  No time to schedule a truck to move the furniture.  Hell, I had no time to go to eat or go to the bathroom!

The "Hour of Decision" morphed into the "Night of High Anxiety."  The hospital had arranged for hospice who, in turn, called to tell me the hospital equipment would arrive by 10 AM and the ambulance would bring Dad home by 2 PM.  I acknowledged the schedule, but I hadn't done a thing about clearing out the living room.   I remember thinking "this is happening to someone else."  Sleep never visited me that night and. as I would soon learn, sleep would be a tentative visitor in the weeks and months to follow.

As dawn approached I realized the day before hadn't been a nightmare, but cold reality, I made a cup of coffee and pondered the living room situation.  I couldn't lift the stuff in order to get it into the basement.  Everything in that room seemed gargantuan.  Overstuffed chairs.  Coffee Table.    How the heck I'm going to make this work?  The answer came in creating what I call a "Neighborhood Nightmare."  At 6 AM, I threw open the front door and proceeded to drag, push, and pull the living room furniture into the driveway.  By 10 AM, the bed and an oxygen concentrator arrived.  Also, in the course of an hour, I had filled three outlets:  two for the hospital bed, one for the concentrator, one for the television, one for the cable modem, and one for a table lamp.  My fingers crossed that I didn't trip a fuse.  At 2:30 PM, Dad arrived to my mother's and my delight! 

At 4 PM the hospice admissions nurse visited.  She reviewed Dad's medication schedule, and other needs, which had simply not crossed my mind.  Need such as toileting a bedbound patient, frequent turning to avoid bedsores, aspiration (choking) prevention, etc.  The only response my head screamed silently sounded like this, "What?" or "Are you kidding me."  Now, I knew I decided to care for both Dad and Mom, but as she recited his care plan, I began to relate to parents bringing home a new baby.  Asking myself, "What the hell do we do now?"

The result of this post-mortem of the first 24 hours brings to light a few key points that might assist those caregivers entering into long-term care of a loved one:

1. Time:  The medical system takes care of itself.  We, who are caregivers, must insist on a adequate period of time to process what we've just been told.  Some professionals might say that my father's transition to hospice care occurred seamlessly.  I beg to differ.  Dad's prognosis needed to be communicated to my mother and to me in a way we could have a day or three to mentally, emotionally, and logistically process this shock to our systems.  The first rule of caregiving has to be self-care.  Switching into a heightened stage of caregiving without so much as a good night's sleep flies in the face of that all important rule.
2. Questions:  There are things that never dawned on me to ask.  Questions such as types of equipment, medication schedules and administration, oxygen administration and electrical power. What's the nurse's schedule?  When I think of getting Dad home and then having to re-arrange a room because I needed more electrical outlets, or not being equipped to meet his needs, I find myself saying prayers of gratitude to the Divine for having workeded as well as it did.
3. Preparation:  Again, prayers of gratitude to the Divine for guiding me in my emergency management career leading me to first-aid courses, including oxygen administration.  The courses, offered by the American Red Cross, proved to be the foundation of my caregiving abilities.

 In closing, I had the honor and priviledge of caring for my father until the end.  As a "just older" woman I hear the little girl inside saying, "I miss you, Daddy.  I did my best."