A Lot of Stuff

Patrick and Jake

J.T., a friend and ALS patient, regularly uses the hash tag - #attacklifesmiling, he's a positive guy so it fits perfectly for him. For me I think ALS stands for A Lot of Stuff, because my house and life is bursting with machines, equipment, and supplies. I've never been a stuff fan it has always created a bit of anxiety for me. In fact, I've been known to go out of my way to drop off things that were left at my house. But here I am an ALS caregiver with lots of stuff to take care of, find space for and often learn how to use.

For years, I volunteered as Service Unit Manager for Girl Scouts in Roseville. We had around 85 troops, about 150 leaders and over 800 girl scouts. I worked with a group of women that were a lot of fun and made it all run. Girl Scout leaders and volunteers acquire A LOT of stuff. This was probably one of my greatest anxieties when managing leaders and the service unit. For those I worked with, they all knew that if an item was going to be purchased one of my first questions would be "who is storing it?" Nothing annoyed me more than to come home and find boxes and bags of troop equipment, craft supplies etc. sitting on my porch. It happened every now and again and it made me crazy. 

Fast forward to now and like it or not I live in a world full of ALS stuff. Just for the "fun of it" I put together a list of the items that came quickly to mind...

shower chair
ramps
blue booties
formula - cases
syringes
cough assist machine
cough assist machine supplies: mask, cushions, hose, filter
trilogy ventilator 
trilogy ventilator supplies: mask, cushion, hoses, filters, distilled water, canister
suction machine
suction machine supplies: tubes, sucky thing, filters, canister
speech generating device, travel bag, and bar attachment
gyro mouse, Microsoft surface and big clicker
medicine - prescribed and non-prescribed, liquid, powder, spray and pill form
pill grinder (2)
pill cutter
pill boxes
gauze pads, medical tape, saline solution
hoyer lifts (2) - one electric, one manual (back-up)
slings (2)
urinals
power wheelchair
extra seat cushion for chair
leftover parts from power chair adaption
manual wheelchair (backup)
walker
foaming liquid soap - non-fragrant
neck brace
neck pillow
blanket rack for over the feet
lift
van
towels, pads, blankets, pillows
and straws, lots of straws

It's like that old wedding rhyme:

Something Old - Van (we opted for purchasing a used van)
Something New - Supplies for the machines, general supplies and feeding tube items
Something Borrowed - Hoyer lifts, walker, shower chair, manual wheelchair (all borrowed from the Greater Sacramento ALS Association)
Something Blue - Patrick's highly valued "blue pillow booties." 

Jake admiring the blue slipper booties

Patrick's blue booties are big blue pillow slippers he wears when he goes to sleep - these help combat bedsores which often occur on the heals of the feet. He says these slippers are awesome.

As you can see from my list - even the ALS stuff has stuff. I coordinate all the supplies for the various machines, order prescriptions, make sure everything stays in working order, provide regular equipment cleanings and take out/put in the items from the ALS Association loan closet. I feel a bit like Radar on MASH - remember him, he was always doing inventory and completed all the necessary paperwork to get the supplies the unit needed. 

PEG Surgery Anyone?

Recently I was given a surgery kit for a PEG tube. I only needed the head of the tube, but the nurse said "here you can have the whole kit." It sits in my kitchen, I've not been able to throw it out - what I'm going to do with it is a mystery to me. I was thinking about letting other ALS caregivers know that I was trying my hand at PEG surgery, in case there is a need. 

I try to ignore the additional stuff that is accumulating and most of the time it works. Lately though, I feel a bit overwhelmed by the amount of stuff and I'm struggling to find new places to store things or at least hide them on the occasion we have company.

I saw on the news recently that thieves are stealing packages off front porches. I kind of chuckled at what a surprise a thief would have if they stole a box from our porch, perhaps a 6 foot tube or replacement mask. We get plenty of packages so the thief would think he'd hit the jackpot. The respiratory company sends supplies in separate boxes so instead of one box, we get six. I'm sure they have their reasons, but it seems a bit of a waste.

I'm not 100% sure where I'm going with this blog - there is no real point. The stuff is here to stay and likely there is more to come. Of course I'm grateful for the stuff and life would be difficult without it. But, I think I'm reaching my stuff limit.