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Caring for the Caregiver – Part 1

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This is a kind of broad philosophical topic that I think is probably impossible for me to hit exactly for each individual in this room. So all I can really do is share some of my stories about how I deal with my day, which is I get asked often, how do I deal with my day, and I’ll summarize a little about that and what that means for me.

I think sometimes anecdotes do have some value and you might find within that some shred of an approach that you may use for yourself or someone you love; and I’m not saying that my approach is necessarily healthy for anyone, or even for me. It’s a process of growth and we work together to try and find that.

When it comes to caring for a caregiver in terms of the topic itself, I wrote some notes down here, so I’m just going to kind of bounce around for maybe ten minutes on these thoughts and then we talk a little bit. What I see in general when I walk into a process of advanced disease that requires you to have a caregiver really depends first on the circumstance of the disease.

For me as a physician, is it a disease that was unexpected, was it rapid or was it longitudinal over years? These have different psychosocial stressors and requires different things of us. I think we all know of the unplanned sudden death that brings with it no capacity for planning. You bring with it your level of development at that moment, and then we have those exhaustive cases of decades of care that seem like nothing at the beginning, seem to fit well within your life, then all of a sudden a decade later you’re invisible and you don’t know who you are, and sometimes even parenthood can have that effect.

Even though it’s the most identifying thing in your life and one of the most valuable, it still can be something, if not managed appropriately you can lose yourself, part of our health and part of your habits; and really that’s what I’m going to try to go back to today a few times are habits that we have in our lives that allow us to do two things; one is in a most healthy way cope with sudden unexpected things that happen in life, that will happen, that is life defined.

There are many unexpected things an accident, harm coming to someone you love, news you didn’t expect one moment before. You bring to that a sense of personal integrity; you can bring to that situation and help yourself cope.
Secondly, is to try and form some resilience and some acknowledgements of the things that drain us over years. I think we talk a lot about in care-giving this concept of co-dependence. Co-dependence came out of, I think in the late seventies and into the eighties and the nineties, it really became a real social trend to understand co-dependence and it became a bit trendy in terms of diagnosing and co-dependence groups. That wasn’t bad; it was new to the social genre to understand who we were. There are risks to certain choices and you can do personality analysis on people – who choose to be a CPA, who choose to be the physiatrist or physiologist. There are personality trends.

Co-dependency is more often than not more associated with many of the problems people elect care-giving in their lives. Now some in this room don’t elect care-giving, but at some point it was alluded to by Ashley, we elect everything to some point. That doesn’t mean we elect the illness of our spouse or the death of someone we love, but we do elect some of our habits we take to that experience, so I say to myself every day I deal with death every day I see it. I hold the hand of it and of those that it affects every day. I just left a dying patient now. Sometimes they are very much alive and other times they have already passed, but to see death every day means something. It’s unusual. It’s not unusual for me, so I’m alone.

Physicians are often very much alone because your experience is so intense. People talk about physicians as being cold or not being sensitive. There are many times that is arrived at because they are exhausted; and they are not exhausted because they don’t get sleep and are up all night. Yes that’s true! That’s what people think, they are exhausted emotionally because when they do care they are drained and if they don’t care they are islands anyway and that’s the matter – they are not nice.

So it breeds a physician over time. Someone that seems maybe short, calloused it takes an exceptional person of insight and foresight in any field to not fall into the trap of being isolated. Isolation is the trap, so I say to myself, we all have thoughts and we hope that our thoughts aren’t public, because we would be in a rubber room, because we think things all the time going across and I’m not making fun of those who can’t control their thoughts. I’m not, I’m very sensitive to it but in a joking way we always think thank goodness I have a filter on, what am I thinking and that’s good, but we have thoughts every day that roll in our heads then we have words that come from those thoughts, whether that word be sign language or facial expression or words as I’m speaking now and then. Then those words are often stopped, but those words for those that are healthy are taken into actions and that’s a really hard step.

I know many people that talk a good game and can curb side consult but, they don’t do anything. But, they are opinionated, “I have an opinion, I’ve had opinions and have you ever done it”, well no, and that doesn’t have the ‘chutzpah’ so to speak.

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