Say What?

Recently I was asked “what am I doing for my Mom’s 90th birthday”? Completely shocked, my first instinctual reaction was a silent, “are you f*cking kidding me”?  My second thought was, the same thing I’ve done for the past thirteen birthdays as a daughter, caregiver, and friend…we’ll go out to eat and have a cake.  My third after the shock wore off, was a silent mindboggling, where have you been all year?

Silent because I don’t respond to insanity.

Not doing it!

We all have that one family member who has no clue what it means to be a full time caregiver or a supportive family member. Do they even know? Every meal, every medication, every shower, every clothing change, every load of laundry, every prescription refill, every Doctor appointment, every hospitalization, every need….every day. 

A PARTY!  Why didn’t I think of that!?!?  Let me throw a party and invite people we never see.  Even better, let me invite the person who told me to hire an aide when I needed to get to the Neurologist.

Throw in progressive multiple sclerosis!  I don’t go to parties anymore.  Now I’m supposed to throw one?  And, it’s months away. Heck, I don’t even make plans anymore because I don’t know how I’m going to feel from day to day.  I’m in bed very early every night with bone crushing fatigue and pain.  

Let me throw a big party!  Not.

Years ago this may have bothered me to the point of being guilted into throwing a big party. I would have thought, “maybe I am terrible not having a big party”. I’m not that person now, thankfully.  A lot has changed.  Gone are the days where I feel guilty.  I do what I can do. 

Perhaps “do you want to throw a party or how can we help you throw a party” would have went over better.  Although, offering to help throughout the year would be more meaningful than any party.

I remember telling this person I had progressive ms and “good luck with that” was the reply.  That reply inspired me. Sorry I’m not suffering the way you expected.

This disease has taught me so much about people.  It’s taught me even more about myself and how we must put ourselves first. We can’t care for anyone if we’re not caring for ourselves.

Caregivers do what we do all year, not just on birthdays and holidays.  We show up every day, all day, and we do it out of love and not out of some grand scheme involving balloons, strangers, photo ops, and guilt complexes. 

Thank you for reading.

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