Friday, October 11, 2013

Measurement…

There are all sorts of reasons why I haven't posted for a week and a half, none of them make me particularly happy. I wish I could tell you that it's been a whirlwind of friends coming through our door keeping me entertained, when in reality I have to turn down just about every offer of a visit because I'm too exhausted for conversation most of the time.

As much as I wasn't pleased that Suzanna had to give up her job to keep a closer eye on me, it's been a great relief to have her near. I can do less and less for myself with each passing day as I get physically weaker. Moving my laptop to my lap has become a two person job if one of the persons is me. Even holding my wrists up to my iPad propped on my chest for more than a few minutes has become too difficult. With this knowledge you might forgive me if my emails have been short and to the point, if they come at all.

In case you're wondering this post is being dictated, with breaks for giggles at the strange interpretations that the auto-correct feature has offered up.

My diminishing strength can't be ignored. Suzanna had set up a belt to help me pull myself up to get out of bed to use the bathroom. This worked for several weeks until I lost the strength to sit up on my own. Her hand has to either help pull me up from in front, or push my back to get me past the point at which I find myself stuck.

The hardest part of all is at times losing my ability to speak. My thoughts are lucid, what I would like to say is clearly formed in my mind but turning that into spoken word eludes me more often as the weeks go by.

I'm frustrated, Suzanna is frustrated (although she tries so hard to not let it show). It embarrasses me when I struggle through a discussion with one of my care team members (I can't reschedule them as I do with friends when it’s a particularly hard day), hoping that they can see in my eyes that I'm still on top of my game mentally - it's just the output that is filled with gaps and missteps, at the very least a much slower pace than my usual rapid fire banter.

My short term memory is also faltering, poor Suzanna often has to tell me the same thing several times over. Thank goodness she’s around when my nurse asks me how the previous day went, the days run into each other as one blur. And please don’t ask me what my last meal was, half the time you’d see me defer to Suzanna for the specifics.

A few nights ago, I was teary and filled with self pity over my diminishing abilities. I've been able to do so little for myself for so long, I've been dearly hoping that a fatal heart attack would save me from these indignities. Suzanna gently held my hand and asked me if it was just now truly hitting me that I was going to die? My girl knows me all too well, I nodded through my sobs. There was some truth to her thoughts despite me having had years to get used to the idea.

Trying to be stoic is bloody exhausting. Trying to hide how awful I really feel can be excruciating. The realities of what I'll be missing out on in the lives of my daughter and loved ones hit fast and hard these days.

I think a lot about how much I will miss the people I care about. Maybe a ridiculous idea that I will be missing them after I'm gone, but for now a comforting measure of how just many wonderful people fell into my life and how much I care about them.

2 comments:

  1. And we truly care about you...I truly care about you my friend.
    Love you

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  2. love and admiration to you sandy. you are truly the most amazing woman I have ever met. when the time comes, you will be missed beyond measure but I am so thankful to have all the beautiful memories I have of you from our visits together as well as your wonderful words and thoughts in your blog. and I am so proud to have been able to call you my friend. always on my mind, forever in my heart. I love you sandy! ♥

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