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The end of the beginning

Wednesday, 22 April 2015 Written by // Jay Squires Categories // Gay Men, Lifestyle, Living with HIV, Jay Squires, Population Specific

Jay Squires on the challenges of caregiving for one's parent - and the birth of a miracle.

The end of the beginning

I’ve only touched on it briefly. Angelo and I are now my father’s fulltime time caregivers. This change came in reaction to my decision to remove Dad from the institutional setting where he lived for nearly 10 years.

In January 2012 his assisted living penitentiary gave him up, practically. They allowed him to give in to what I now believe is his depression. Dad came to spend his days lying in his bed, flat on his back. I would visit in mid-afternoon and he would be dead asleep. I’d gently wake him to find him disoriented and only able to speak with difficulty. At these times he would wave his arms, pointing at nothing, obviously wanting something but unable to tell me what. I worried for him. I have always been grateful that even at his age (88, far older than any male in his family) he still had his mind.

I received my appreciation for my intellect under my father’s tutelage. He took pride in telling me of his achievements, which are many and varied. He served as a combat infantry soldier first as an enlisted man in World War II, later as an officer in the Korean cold and as a helicopter observer in Vietnam’s First Air Cavalry.

Wounded twice, once critically, he was awarded two Purple Hearts for his combat wounds and two bronze stars for bravery under fire. In 1968 he retired after 20 years’ service and began a second life.

After receiving a Master’s Degree in education he began a teaching career in Richmond’s suburban Chesterfield County. He taught high school history there for 23 years and was often voted by students one of their favorite teachers. In his spare time he founded the school’s championship golf team.

Ten years ago when his medical problems began with a broken hip I began to worry that if he declined his intellect might fail. The worst I feared was a time when he would no longer remember, where he could no longer share my favorite tales. When I took my fall I feared the same for me. In my mind we were joined together on a precipice, me at least praying against a fall.

Over the years following my fears eased as Dad showed no sign of a decline. The days I visited were shared before the TV with the week’s golf tournament blasting to accommodate his tricky hearing. Those who know me personally know I can lay a line of bullshit like a champ. My father won the lifetime achievement award there. Our conversations were electric.

The decline I witnessed in the spring terrified me and I vowed to find the cause and cure. In May I had to stop. Dad was hospitalized with the most alarming condition I had ever seen. One afternoon I visited and found him as always in bed. I could not ignore what I found.

Dad’s abdomen was swollen to an obscene size, literally the size of a beach ball. Thankfully he was in no pain but he could not remember when or what happened. I knew this situation could not have occurred quickly. Foolishly I went to find a staff member.

The nurse’s aide I found was not aware of my father’s condition. She did not know anything was wrong. Disappointed but not surprised I returned to Dad and called 911.

Dad strapped to a gurney and I following closely behind, we drove to the hospital that saved me in 2012. In the ER we began the age-old routine: quiz and answer, poke and prod, speculate then speculate again. Hours passed with no answers, just negative CAT scan films. At 2:00 a.m. a doctor, the fourth since arrival, appeared to announce the consensus. Dad, they said, had a urinary blockage. This made no sense. How could a bladder bloat an abdomen to this size?

This admission lasted four days and he was released, deflated, with no advice but to see his PCP in a week. I drove Dad to his room, put him in bed and held his hand until he slept.

The next day he was much improved and I said a prayer thanking God for our good luck. Six weeks passed until it struck a second time. Visiting, I walked in on the scene from May. We retreated once again.

This hospitalization lasted longer and produced a different result. His physician, now a gastroenterologist, diagnosed a bowel obstruction. Manual enemas produced no results and Dad was put on a diet of GoLYTELY, a serious laxative used to prep a patient for an endoscopy. Dad’s colon was flushed and he deflated.

He had two more identical attacks in November and January, 2015. When he had deflated a fourth time a surgeon consulted Dad and me. He gave us two options: “Watch and Wait” or doing essentially what we had done with no success. Our alternative was frightening: a colostomy which would disconnect my father’s lower intestine, rectum and anus, rerouting the remainder outside his body through a creation of the surgery named a “stoma.” Neither Dad nor I was convinced he could survive many more hospitalizations. Dad chose the surgery.

A bag attachment is placed over the stoma to contain Dad’s waste. This bag turned a successful surgery into a nightmare. Dad did not leak in the hospital but at home it was a daily event. His bags with three types of custom adhesive simply could not stay attached. The volume of the result varied but every day started with the tiresome ritual of cleaning up a mess of shit.

 "I told myself I had to fix this problem. I sold myself on the idea I could do it."

I surprised myself and I was not squeamish. I looked at the cleaning as part of my job – a real job with prayed for success in the making. I told myself I had to fix this problem. I sold myself on the idea I could do it.

Experiments with different types (one piece or two bag setup) and the products of different manufacturers failed. We visited the city’s leading ostomy clinic where a new type of bag was attached and we were shown the door with promises of a four or five day gap between leak-less changes. This bag failed in twelve hours and later disconnected and spilled a massive amount. The situation was worse than ever and I began to lose hope. How could I give my father the life he deserved if he lay in shit each day?

I have written before of my belief in miracles. I know God guides my life and its result is his plan. God does not usually herald his miracles with flashing lightning and rolling thunder. Most miracles are quiet things. They are sensed not by their occurrence but instead by the results they produce. When the world suddenly brightens and plaguing problems disappear like wisps of smoke there is nothing to do but to search for the cause. When all possibilities are exhausted we turn to the one thing not considered, the one thing that can turn the world upside down with a firm will. These miracles must be from God.

On April 14 at 7:30 a.m. I woke Dad and began my morning ritual. I helped him roll onto his side then I raised his shirt to receive my morning greeting of filth. I was shocked. Dad was clean and the bag had held. This was the first day in 6 weeks with success. I could not believe it but I was very grateful.

The bag held for three more days until it was time to change it, not because failure was imminent but because the bag was at its factory wear limit. We believe the problem is solved. I add “for now” because I am a sceptic doubter by nature. I have learned much in three years but this childish habit remains. Yet my doubt could find no foothold; the facts were obvious. God’s miracle saved us.

I am very proud of the team I have put together. Angelo, our aide Kiara and I manage the house and are front and center in Dad’s care and feeding. We are joined periodically by Heather, our RN and Mary Beth a wonderful Gaydar-ed physical therapist. These two have Dad moving. He again uses his walker, “just” for entering and exiting his bed. I believe strongly that therapy will strengthen him, restoring muscles wasted by nine months lying prone. I sit with him and we loudly share memories, so many memories.

Six months ago I was hopeless. Two and a half years of wandering and endless, fruitless job-searching brought me nothing but thoughts of how my life was nothing I could have imagined before. My pills seemed to be failing. If they crapped out where would I be?

These concerns were eclipsed by the first miracle – my father’s illness. I knew God set this illness on us to prepare us for the final miracle. That miracle has now been granted. My growing family is living together in a wonderful home glowing in the springtime sun. Please join us.