Sunday, July 16, 2017

What is it really like?

While sitting on our upstairs toilet last week I noticed the brand name sticker on the shower wheelchair. It is made by a company called EZee Life. Really. As if ANYONE who has to use a shower wheelchair, especially one that leans back and has a headrest built in, has an EZee Life! I get the marketing behind such a name, but it kind of pissed me off.

I have ALS and a lot of attention is focused on my needs, my loss, my grief. Honestly it is really hard for those in my immediate circle, particularly my caregivers, particularly Adam. On top of taking on an enormous amount of responsibility and caring for me, my loss is also his loss as our futures are so intricately entwined. We expected to grow old together, and maybe we still will. But the plans we had for our later years are forever changed as ALS has altered our path together. It is not an EZee Life.

Everything we do takes effort. Everything has to be planned out and will only get more so as my body movement becomes more limited.  I am overwhelmed with all the physical labor it takes Adam  to get me into bed. I'll break it down for you:

1. Adam gets the stairglide to the bottom of the stairs and sets up the pivot disc.
2. I move my pwc in position in front of pivot disc.
3. Adam lifts me from the pwc, and using the pivot disc, places me into the stairglide.
4. Adam gathers everything we need to take upstairs into the bucket - meds, pill container, phone, iPad, chargers, etc.
5. He heads upstairs with stuff and I follow behind on the stairglide.
6. Adam sets up pivot disc and manual wheelchair at the top of the stairs.
7. Adam lifts me from the stairglide and pivots me into the manual wheelchair, which requires holding me with one arm and the wheelchair with the other.
8. He then puts my feet on the foot rest as I can't really hold them up anymore, and wheels me to the bathroom.
9. He takes my feet off the rest and sets up the pivot disc in front of the toilet.
10. Adam then lifts me up from the manual wheelchair and pivots me, using one arm to hold me and the other to take down my pants and underwear.
11. He then has to carefully lower me onto the toilet, into a position in which I can best self care, as well as being aware of my left knee which tends to lock.
12. I take care of business but it requires some help from Adam ...things I never thought he would have to do. It is a little more complicated due to ostomy care.
13. When I am done Adam has to change me into pajamas which we do with shoes on because we need them on for traction.
14. Once my pajamas are half on Adam lifts me from the toilet, holds me with one arm, pulling up my pants and underwear with the other, pivots me, and puts me in the manual wheelchair.
15. Then to the sink where he washes me up and helps me brush my teeth.
16. Adam wheels me to the bed. He has to put the pivot disc on a riser because our bed is so high and it is the only way to get me in.
17. He positions my feet just right, lifts me while standing on the riser, and pivots me until I am sitting precariously on the edge of the bed.
18. While steadying me on the bed, Adam quickly repositions himself and flips my legs onto the bed.
19. Then there is repositioning me until I am comfortable, putting the bed in the right position, making sure my right foot is straight against my foot pillow, etc.

I am not sharing this for people to feel sorry for us, or for you to look at Adam or I in any different light (though he is a pretty awesome guy). I just want people to know that this disease, like all traumatic health changes, affects the CAL just as much as the PAL. Adam gets sad about how things have turned out, and has difficult days. I would be worried if he didn't. Then there are the days when we laugh through face washings, and he is stealing kisses with every transfer. It is not an EZee Life, but it is ours, and I am blessed to share it with Adam.

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