The Decisions that Haunt Me…

fall stairs

Taken by the Allegany River in Seneca Territory

I think whenever we make big decisions about our parents there are just some choices we will always question, ponder, and wonder, “what if?”  Since Mom moved in with us I’ve been thinking about the decisions I had to make on my father’s behalf in the three years before he died.  There are some big ones that haunt me and lately been contributing to my insomnia.  I’ve heard all the advice–“hindsight is 20/20”, “you can’t second guess yourself”, “Your Dad wouldn’t want you to think that way.”  All those words truly do not matter.  There are three big choices that, I think, will haunt me forever.  I write this to encourage those around me to think about having the hard conversations with your parents.

1. Who makes decisions in medical emergencies?  I was 600 miles away in January of 2012 when my father had a stroke.  Just 10 months before we were dealing with a cancer diagnosis so one might think we’d have that conversation during that ordeal.  Nope.  I was a new mommy and my Dad didn’t want me to worry.  He told me not to worry because he was going to beat it and there was no need to make decisions at that point.  He did beat it.  We celebrated.  Ten months later we had no medical power of attorney in place.  My aunt and uncle were on site dealing with the day to day of the life changing outcomes.  I felt powerless to make decisions.  I was 32 years old and felt like a scared child.  I didn’t even know where to begin with the long road that faced us.  How do you advocate from 600 miles away?  I know my family was doing the best they could in a really bad situation.  But, I have to live with the fact I was not there.  I was at home starting a new semester because not only was I a new mommy, but also the sole provider for our family.  There was no good choice.  My aunt and uncle didn’t have good choices either.  But, much of what we struggled with at first could have been made easier with a protocol in place of who was going to make decisions in medical emergencies.  It truly bothers me that we never had the conversation until it was too late.

2.  The dreaded decision of an assisted living facility.  This is the one I think about on a daily basis.  No, probably an hourly basis.  I have thought about it everyday for 4 years.  This is no exaggeration.  I swore up and down as I grew up my parents would never live in an assisted living facility.  It was against everything they had ever taught me about caring for our elders.  Dad had significant mobility issues following his stroke and needed someone to be with him all the time.  With families of their own, this was not feasible for my aunt and uncle.  I, again, was 600 miles away.  I think I always believed I would figure out how to get him out of there and get him the kind of home health help we needed.  I looked up program after program, I made call after call and nothing seemed to work in our favor.  I nearly sold his house just to get the money to get him out of there which caused conflict because he did not want me to sell the house.  Hell, I even started playing the damn lottery in hopes I’d win.

I begged my Dad to come live with us.  I promised trips back home.  But, Dad loved the Allegany Indian territory.  He did not want to leave.  I understand that fully and completely.  That was his decision.  But, it also meant the horrible decision of him residing in a less than ideal care facility.

I look back on this decision and think, “We could have just moved there and taken care of him.”  The sad thing is we could have.  I recognize this now–again–hindsight is 20/20.  I could have left the tenure track and used my PhD skills in a way to create a living.  My little family could have easily lived in his house together.  At the time, I thought my only option to professional success was the achievement of tenure.  That is a story for another blog.

What it boils down to is whether the facility is ideal or not or you swear right now that your parents will never live in such a place you need to have the conversation with your parents and your siblings.  This is a deeply difficult choice.  This is a heart wrenching choice.  Please, have the conversation sooner rather than later.

3.  Finally, it haunts me that I feel like in the last 3 years of his life I failed to take care of him.  I will forever feel like he should not have been in that situation.  I will forever feel like I should have done more.  He was my father.  He was my responsibility.  When we got his terminal cancer diagnosis I moved home immediately.  I uprooted my family, loaded our cars up, could have cared less that it was the summer before I went up for tenure and headed home.  I ask myself, “What if I’d done that 3 years before?  What kind of time might we had?” At 36, I have some pretty deep regrets and decisions to work through.  My Dad had a notoriously laid back attitude.  He never wanted to inconvenience me.  I wonder how much of that I took for granted in the last years of his life.

My father loved me unconditionally and I hear him daily telling me to, “Stop.”  But, that’s the thing about those life events that haunt you–they do not listen to reason.  These are all situations that we do not want to think about.  They are hard.  They are morbid.  They acknowledge the mortality of our beloved parents.  However, we never know what is going to happen in life.  Being able to make good medical decisions and knowing where your parents and siblings stand on important care issues is critical in a crisis.  Take it from me.  You don’t want to have to make those decisions while in crisis.

Sit down this week.  Talk with your parents.  Talk with your siblings.  Talk with your spouse..don’t put off these important conversations another week.

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