Wednesday, March 23, 2016

Another point of view from another caregiver


This is a post from a Facebook friend whose husband has ALS.  They started a non-profit foundation called Matt's Place.  So many families are unprepared for the expense of dealing with ALS - from ramps, remodeling bathrooms, wheelchair access.  

They started a non-profit foundation called Matt's Place.  Here is a link to their foundation for more information:  http://www.mattsplacefoundation.com/

ALS fact of the day - this is slowly becoming a fact of the week instead of a fact of the day.  Trust me, it's not for lack of things to talk about!  I just debate on how much information I should share or what anyone really wants to read on a given day.  

I cannot explain how the days are high to love to high again, in some weird bipolar plunge of emotions. (I suppose there are drugs to help.  But the idea of going through this completely numb, although appealing in so many ways, doesn't seem like an option I want at this time.)
Is it because I am with someone who is dying?
I have an image of myself in some strange cartoon character, walking along, happy as can be...hips swaying, arms swinging, whistling my little tune, a smile on my face...happy as can be...

Then, without warning, I fall into some strange pit...I logically know that all I need to do is climb out and I'll be on my way again...but I'm stubborn...I don't want to ask for help and I want to do it all by myself...
After a few days, I climb out...I feel better....proud of myself for doing it all by myself...but angry as I look around, noticing everyone just walked by me...
Why didn't I ask for help?  Why didn't they see I needed help?
But then, I go back to being my happy self again...start walking, swaying my hips,swinging my arms and happy once more...until I fall back into another pit...
That is the only way I can explain what happens.
I get sad...angry..frustrated...overwhelmed..
Sometimes when Matthew and I are talking, I can't imagine how hard this must be for him...I think sometimes he looks at me and feels the same way.
Each of us are alone in what we are going through, no one around us can relate or understand, and each of us feeling like a burden to others...
So, when I fall into my pit, I need a few days to just be angry, and sad, and lonely in my experience...
Thankfully, when I dig myself out, Matthew is waiting for me, there for me to lean on...
I promise tomorrow, I'll write about something happy...

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