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What I learned caring for my father

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By Jessica Gilbert

Guest Columnist

I recently took my father into my home and cared for him while he was on hospice care. I was honored to do so.

I know many of us are told these days not to burden our loved ones in our times of need. That we should go to a facility and pay strangers to take care of us when we are at our most vulnerable and closest to our demise. My grandmother insists she would rather pass away in a hospital environment, instead of surrounded by those who love her because she simply cannot stand the idea that she was a burden.

I am telling you, do not do your potential caretakers the disservice of thinking you will simply burden them. You will – but it is a weight I am glad I bore. It is extra work that I am thankful to have taken on. Those were precious days for me. Sleepless, yes, long, certainly but more precious to me than sleep.

I got 11 more days with my father. Those days are dear to me and while I am broken-hearted, I am still happy that I have this extra time, that it almost feels like I stole, to be with my father.

Those 11 days I woke up at all hours and asked, “How can I help you?” and “What can I do for you?” And before leaving the room I made sure that, “Is there anything else I can do for you or get for you?” were the last words I said.

How often do we do that? How often is something like that the first and last thing to pass our lips when we interact with someone? Not, “What now?” or “Wait a minute.” or “Hey, I need you to do something for me.”

I set myself aside and I even pushed my kids and husband a little to the side too, in order to make room for Grandpa Robbie.

I learned that I have a much deeper well of patience than I ever thought possible. Knowing my near constant emotional state of irritation or at least a persistence of annoyance, it was really surprising to find this untapped source of patience I might never have otherwise known was within me. I never once recall feeling aggravated or short tempered even in the midst of my father's final confusion.

One of the real miracles is that my patience didn't even crack for myself. I am the most irritating and disappointing person in my life. I consistently fail myself and don't live up to my expectations on such a regular basis one might wonder why I even get out of bed in the mornings. Really, I'll probably fail at something before my feet even hit the floor.

However, even when I was having difficulty finding some way to help ease my father's pain or understanding what he was trying to communicate as he neared the end of his life, I wasn't constantly chiding myself for failing. Some truce had been formed in my subconscious that realized this was not the time for self doubt and critique. I learned how to simply be present and not tied up inside my head.

I learned how precious time truly is. Because of this cancer, I feel cheated of a good 20 years. My father's family has many long lived people in it... If the cancer doesn't kill them, that is. My father was 64. I am 38. I should have had 20 more years. My children should have had their grandfather in their lives for so much longer.

I have five children who will now grow up with no grandfather, not on either side of their family.

Until my teenage years I had three grandfathers, including one great, and, I had five grandmothers, including three greats. My youngest daughter is only a year old. She will never remember my father. If I manage to have any more children, they will come into a world void of him. My father never saw a single great-grandchild.

I learned that your actions have consequences. Oh, yes, I knew it before. I'd even watched my father's father waste away and die of much the same affliction that ended him.

But my father's choice not to go to the doctor and to downplay his illness has had huge repercussions.

There will always be these tremendous 'what ifs' hanging in the air. What if he had quit smoking sooner? He hadn't smoked in 15 years. What if he'd gone to the doctor sooner? What if my mother had been a more capable caregiver? What if I had been more insistent on his coming out here to let me care for him? What if we could have found just one treatment that worked? What if I had done a better job taking care of him?

The ripples of my father's decisions will hit myriad shores long after his passing. I have a tendency to self diagnose and then go to a doctor for confirmation. Because, I know the little secret. Diagnosis is a guessing game, albeit an educated guessing game. The only time I go to a doctor on a regular basis is when I am pregnant.

Will I be more vigilant with my own health now that I have felt the consequences of the decisions my father made about his?

Our choices are our own to make but the aftermath belongs to all of those around us who care or who are duty bound to us. I hope that I will take that into consideration with my future choices.

I hope that my children will remember when we took in Grandpa Robbie. I hope my boys will forever remember last hugs and last stories and last games of chess. I hope that perhaps my two-year-old daughter will have some impression of him and remember.

And I will remember my father to everyone in my life, as often as I can. If only to keep him fresh in my own mind and heart for as long as I can.