It’s been a year filled with decisions, and I’m not referring to the recent Presidential election. If you thought this post was going to be about politics sorry to disappoint. I’ve had pretty much zero interest this year. Sorry, sad maybe but it's true.
So let’s start with a vocabulary lesson from the infamous Webster’s shall we?
Decision – The act of deciding; a judgment or conclusion reached by deciding.
Decide – To settle; to determine, as a controversy or contest, to determine the conclusion or issue of; to make up one’s mind.
Some decisions are made so quickly and easily that we have to give very little thought to the question at hand. Some decisions are no brainers…pardon the pun. Example: ’would you like fries with that?’ Other decisions can pose more of a challenge….What to wear? What classes to take? Where to go on vacation? Then there are those difficult ones...the more thought provoking and consequential decisions…the life-changing ones.
Our family was encouraged to consider making one of these decisions last week. I’ve known families who have had to make this kind of decision. I would never wish for anyone to have to consider making this decision. This is a heavy burden to carry for family members.
Expecting it or not, hearing the words come spilling out of a doctor is very surreal.
Let me set the stage for you. After spending the night with dad last week and going on 27 hours with no sleep, I was unpleasantly surprised by a visit from one of dad’s rehab doctors. He introduced himself as a doctor that practices general medicine but is also certified in palliative/hospice care. Having worked for a Home Health agency for many years I am acutely aware of the philosophy of Hospice. It is comfort care for end of life. Needless to say his introduction did nothing to soothe my soul that early morning. Alone with my dad, and the two aides whose impeccable timing found them finally coming to assist with bed changes, I had to force myself to focus on the words the doctor was speaking.
The conversation went something like this… ‘I think the time may be coming that you and your family may need to discuss future long term care….blah, blah, blah, it’s ok to hope for the best but to prepare for the worst….blah, blah, blah’, you will want to honor his wishes…blah, blah, blah. All the while I am trying to watch dad from the corner of my eye to see if he is listening, hearing, comprehending any or all of this. Maybe the timing of the aides was impeccable after all, I believe he was too distracted to hear or understand what the doctor was saying. I will give him some credit. He seemed like a compassionate man, taking the time to listen to me and answer my questions but I would love to give him some pointers. First, when delivering that kind of message it might be best to see if other family members might need to be available. Second, refrain from using the quality of life vs. quantity of life more than once in your conversation. I get it. We get it. We always have. We want QUALITY.
So it has come to this. Of all the decisions that had to be made during the course of dad’s treatment…chemo, radiation, more chemo, stopping chemo, decisions that we all trusted the doctors when making we are now faced with making the toughest decision of all. We are making decision to effectively care for him without ‘treatment’. We all agree that we want him home. Hospice or not, he belongs at home. The changes and improvement hoped for are just not surfacing. Time may be our only ally. During that time, we want him home.
It is hard not to look back and let the mind rifle back through all of the crucial what if’s, if only’s, should have’s, could have’s and second guess or even try to justify the medical decisions that were made. Would the outcomes have been the same? Were we destined to be on this road all along? Did we just prolong the trip? Did we follow the wrong map? I have found that these questions and thoughts serve no purpose now. No matter the original intended destination we are where we are.
So we move forward one day at a time with hope, faith and family intact. Our love for each other and your prayers and well wishes get us through each day!
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