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Posts Tagged ‘Advice’

Just over two years ago I wrote an entry entitled ‘You Don’t Know’ about the idea that you don’t know what it like to walk through someone elses illness.  I’d like to revisit this idea from an emotional stand point instead of a physical one and from the point of someone who is losing someone they love dearly.

“I would give anything for one more visit with my mom”

“Embrace the time you have”

“Spend all the time you can so you have no regrets”

‘You’re so lucky, I would give anything to have known it was coming, to have had more time”

This is what I hear and more when I ‘complain’ about watching my father fade away as he suffers and dies slowly.  When I struggle to figure out how to deal with the emotions of losing one of the most important people in my life.  I nod my head and I say thanks but I wanna scream “YOU DON’T KNOW!”.  Early in this process when my dad was still whole the platitudes of embracing him, making memories, and regret for lost loves I understood at this point they hurt.

Here is what a visit with my father looks like:

I visited yesterday, I walked in to his room in the nursing home, not much different than a hospital room, and he was sitting up in his bed.  His breakfast untouched in front of him, his hands shaking uncontrollably, glasses off, eyes barely open.  I said ‘Hi Papa’ and he looked at me and was happy to see me, he knew who I was (Thank God!).  He said ‘Hi’ and then muttered incoherently for a bit.  I could see that he was struggling to see what was on his tray so I asked where his glasses where, he continued to mutter, I found them and asked if he wanted them.  He said yes and I helped him put them on as this simple task that he’s done most of his life is a challenge for him now.  I took the lid off it, his fruit, and hot cereal telling him what each was and asking what he wanted. He muttered at me for a bit more and I figured out he was asking about the juice on his tray.   At this point my mom came in and I asked her to find him a straw as I held the cup to his lips because he couldn’t, his hands were shaking too much and too hard.  When I pulled the cup away he said “That’s good!!!”.  Mom came in with the straw and with help he finished the juice.  He proceeded to mumble and mutter at my Mom about her looking ‘different’ and ‘less dark’, we have no idea.  He then spoke a bunch of garble gook that had the word “back” in it.  Based on his movements I could tell his back hurt and between gestures and deductive reasoning we figured he wanted the bed down.  Throughout the half hour I was there he faded in and out of consciousness many times.  I had to leave the room once as I refuse to cry in front of him.  Very little of what he says make sense, and he doesn’t in general understand what he’s being told.   When I left I kissed him on the head and told him I loved him he said he loved me to.  The only positives, truly, of this visit are that he knew who I was and understandable said I love you.

This may not seem that bad or whatever but I left this visit and for the first time in this process completely fell apart.  I’ve strived to control and push down the feelings of this process and seeing my Papa like that made it impossible.

When people tell me what they would give for one more visit with their lost love one in response to my sorrow at my father’s decline I want to ask if they would still feel this way if this was what a visit looked like. If after a visit you sob for the person you love.  The reality is I would give anything for one more conversation with my dad, my Dad – My Papa, not what’s left.

Just because you’ve lost someone and miss them doesn’t mean you know what someone who is going through that experience is feeling.  Your relationships, your way of dealing, your everything is different.  You are a different person and therefore your way of processing is different.  Even my sister and I, both losing the same person in the same way, are going to experience this loss differently because we are different.

I’m not saying don’t help or offer your thoughts to people going through this process, some of the greatest help through this has come from friends who’ve been through it, I’m saying think before you speak.  Your desire for your whole completely missing parent doesn’t mean that my sorrow for my declining and slowly vanishing and suffering parent is invalid.  I can’t embrace my time with him anymore because time with him means sorrow and pain.  It means watching him search for words, it means watching the odd shape of his mouth, it means trying to understand the gobbly gook that is speech, it means seeing the pain on his face, and it means watching him sleep and fade in and out of consciousness.

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