October, 2021
When we last left this subject, you were nodding off to my description of the characters that make up Team Waldo, my care ecosystem. You probably completely crashed when I started talking about insurance companies. So you probably missed the part where I promised one more installment about the Team Waldo care ecosystem and now you’re stuck with me.
Nurses are the next up. In the clinical setting I didn’t see much of the nurse although I remember one being useful when I couldn’t reach my overworked doctor. The nurse at the Forbes Norris ALS Institute was also a case manager and incredibly helpful.
The whole situation changes when you go into hospice. Here the nurse is also a case manager as well as an almost doctor in their knowledge of practical care. She has helped us with everything from resolving emergency breathing issues to managing prescriptions. Since starting hospice in March, I have seen the doctor twice and the nurse has been able to handle everything else. Whoop whoop!
There’s an army of therapists that populate Team Waldo. At the outset, the physical therapists and the occupational therapists were the most used. The former tried to keep my body from going any faster as the disease took over and the latter provided tools to help me and my caregivers when the disease inevitably won. Now, in my advanced state of progression the respiratory therapist has become the most important. He is my new best friend because when I can’t breathe the rest of my issues become less than academic.
The toughest job on Team Waldo is held by the caregivers, especially St. Laurel. They have a difficult set of tasks, particularly given my almost total paralysis and complete inability to speak. Add to that most count English as their second language, and except for my first caregiver, none could perform all the basic functions involved in feeding, transferring, nebulizing, and washing me, as well as a working knowledge of respirators. This put a huge burden on St. Laurel to train them. We are fortunate to have now two regular and caring caregivers six days a week. When we had a gap in care early this year, our agency made constant efforts to provide backup. Because the supply of caregivers is so low and demand so high, we had some real winners and even one who didn’t show. With two dedicated caregivers right now I consider ourselves very lucky.
And then there are the vendors. St. Laurel listens to more worn out hold music than any human should be forced to endure. The hospice agency has made things somewhat easier with certain supplies and meds, but there are still a thousand things to chase down constantly. Like when a work request for the LazyBoy on Wheels requires a prescription. You can just imagine but it’s better you don’t.
The last members of Team Waldo are friends and family and you who visit my posts even though you have much better things to do with your time. Thank you all so much. It means so much to me I may start selling Team Waldo t-shirts.
See you next time.
Embrace The Suck 
I will take a team Waldo T-Shirt, even if you were just kidding and I have drawers full of T-shirts I very rarely wear, but all with cool messages and good memories.With very best wishes, as always, Dick
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if researching, designing, ordering, receiving order, knowing sizes and distribution of same weren’t such an onerous chore, I would certainly encourage you to move into wholesale or even retail, but as I am learning, just keeping up from day to day….means probably no T-shirts. But great idea as last thought of your truly interesting reporting of this episode of your life. Affectionately, Jeanne
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Bob, sign me up for a Team Waldo shirt. I would be proud to wear it. Thank you for sharing your stories with us and being a part of my life.
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Damn! You get funnier every week! Miss u
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Bob, I find myself waiting in anticipation of your next blog. You are an inspiration through your words and your love of life. As for a Team Waldo T-shirt, I’m sure a lot of us would love to donate to the ALS cause for a shirt.
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I sure do hope your posts will be the basis to introduce any newcomers to what you have so beautifully described of your experiences. I’ve learned so much more than I never realized I didn’t know, thanks to your efforts! You are a honey! Kay
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I am happy to hear that there was a positive shout out for your nurses. There are many many good ones and an occasional not so good. Being one of them I consider Saint Laurel an honorary nurse or physician take your pick! as a learning curve has been steep and both of you have climbed ittogether. Not to be political but since we know most caregivers are newcomers to the United States and a language barrier is big however many brilliant immigrants begin this way as caregivers. Someday we may be asking for immigration as we are unable to staff the care needs in every state that I know of “they are short staffed “there -in lies your continual challenge; to train! I hear you loud and clear that it is ongoing &!endless to train so for that I send many prayers for your endurance and to be provided with great people.
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Not sure I finished but yes send a Team
Waldo t shirt for your fan – Marie
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Dear Bob, I am so happy you have two good caretakers six days a week. And I would love a Team Waldo t-shirt.
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Bob, I really look forward to reading your weekly insights. Your sense of humor, indomitable spirit, appreciation for your friends and helpers, and your love for Laurel radiate from your essays. Plus you still get pissed off at stupidity in a very entertaining way…Christine
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You are obviously very loved, even if a pain in the you-know-what. Count us in as part of the loving group.
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