THE ODDS (Debbie Does ALS)


Wednesdaide's child


Courtney, my regular Monday aide--or Mondaide--was sick, so the agency called to say they were sending a newbie named Myra (not to be confused with the famous NurseMyra over at Gimcrack Hospital). John decided to stay home, just in case. It so happened that Myra did not have experience with ALS so John provided instruction and all went well.

Rhonda is the usual Wednesdaide, so I  was surprised that afternoon when another unfamiliar face (Heather) appeared. She seemed to understand me well enough and, though she hadn’t worked with an ALS patient before, one of her clients has MS and is immobile. I was in my cozy, comfy bed and asked her to help me to the bathroom.

I was somewhat concerned when she started to move my legs without supporting my back (quickly corrected), but when transferring me to the rollator, concern changed to trepidation;  my AL-ass was improperly placed and down to the floor I slid. A very trembly Heather scooped me up but my dead weight was uncooperative and we only succeeded in moving my legs under the bed. Mustering her strength, Heather hoisted me from under the arms and up I went, but my legs were still outstretched under the bed; my shin scraped hard against the frame but I couldn’t find my voice to protest.

At last, Heather sat me on the edge of the bed. By this time I was exhausted and my arms, shoulders, neck and leg hurt like hell. All I wanted to do was get back into bed. Since the greater part of me was already there, it seemed safe enough. Silly me. Before I could explain the process, she let go of my shoulders and dived for my legs. My upper body fell backward and the pain in my lower back made me gasp...or did I gasp because I was flat on my back? Either way, they were panicky gasps. When my legs were restored to the correct elevation, Heather pulled the rest of me into place...well, sort of, almost, except now I was too much at the foot of the bed. Heather’s solution: pull me up under the arms. Twice. It’s  Sunday and I’m still sore.

Several calls were made, and by 6:30 regular Tuesdaide Cherry was here, restoring order. Needless to say, Heather went home.


Mykljak said...

Jesus. I couldn't read that without wincing. Felt every awful bit of it.

tcutraveler said...

It was quite a painful read - I can only imagine how you felt.
Why did the agency not have someone that had dealt with an ALS patient before? You require specific care and they - knowing your condition - should have sent someone more capable.
Hope you are feeling better!

nursemyra said...

Are your carers allowed to pull you up under the arms? Is it possible for you to get a mechanical lifter?

Deborah said...

I do have one, but for a variety of reasons it wasn't thought of. Thank you for your very practical comment!

Sylvia said...

I hope you are feeling better. This episode seemed so frightening. I hope it is never repeated.

Jenny said...

my forehead hurts from scrunching while reading, and i even knew the whole story. TORI!! i am THERE with you!! and nurse myra too! is it time for us to try to bring the heavy duty lift upstairs? what's it called, the hoyer lift?

Allison said...

It's Allison (Bob's daughter). Now I feel bad because we've been hoisting my dad up in the bed from under the arms :( But we are getting a proper sling for the Hoyer lift soon (they never gave us one that fit him!)
He has never said anything about it to us, but then again he hasn't been using the Dynavox or the computer or writing us emails, so there hasn't been much communication...
Maybe you could say something to him about it? I can message you his email on facebook...
P.S. I started my own blog:
Can I link yours?

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