Good Days & Bad Days = Whiplash
In the two weeks since the ER debacle, things have calmed down as much as they can calm down. We canceled all appointments for the days following the 13-hour ER stay. And though we never received a precise reason why Minke was having pain and pressure in his chest and abdomen, we self-diagnosed (as one does in the 21st century) and decided it was Minke’s latest ALS medication that was the culprit. The drug is still new; only approved last September, and Minke seems to think they may have rushed it through for FDA approval. Possibly. The side effects of the medication are definitely GI-related. So, Minke has stopped taking it. He is seeing his neurologist today, so we’ll wait to see what he says.
Everything about this disease is a waiting game. And no two patients are the same, so we are in a constant state of not-knowing. It can be torture at times. The not-knowing. I am a Need-to-know-type of person, dammit!
I mentioned in my last post about the Overhead Lift versus the Hoyer Lift. If you need reminding of what a Hoyer Lift is, go here for the post that shows the video of this horrific machine!
The Overhead Lift is a game changer. I don’t have to try to lift Minke up, or roll him side-to-side, or knock myself out trying to fit the Hoyer into places it will not go. The guy who installed our overhead was amazing. His father had ALS, and he wanted to find a way for his father to live more comfortably. He came up with this design and it is brilliant! Have a look:
This is me trying it out. OMG! It was so much fun! I think we could make some additional income by having people come over and take rides in the overhead!
In a much more detailed video, here is Minke in the new overhead lift!
So much better, isn’t it? I’m actually able to do this machine. I feel better about my skills as a caregiver and Minke feels safer with me as his caregiver. Big Plus!
Some days when Minke has good energy and we are laughing and joking around with Molly and Zelda, things feel almost normal. Almost. But just as quickly, the next day can bring searing depression, bouts of constipation, low energy, and feelings of hopelessness. It can go back and forth like this from one day to the next. It’s very hard to keep the status quo around here.
The never-ending parade of people continues to trample through my house. There’s nothing left for me to do but accept it. And I also need to accept that my living room looks like a hospital room. That Minke is taking his shits on a commode in the living room, which, because of our open floor plan is extremely close to our kitchen. (sorry, my Love … just trying to keep things real for the readers) Ewwww! I know. But what can we do? Pretend we’re camping? Ha!
The bathroom remodel is STILL pending. We’ve been waiting 8 months (since before Minke even needed the remodel) to remodel our bathroom to include a walk-in shower and a doorway wide enough to accommodate his power chair. A wet room they call it. It’s not happening. Don’t know if it will ever happen, and Minke has all but given up. So, the commode in the living room is how we’re dealing with it. Molly is a champ at getting him on that thing. I’m pretty good; not as good as Molly or Minke’s son, but they are both much taller than me and have a longer reach. It’s very difficult to be height-challenged when having to caregive. What can I say? I’m a shortie. Always have been, and as I continue to shrink, always will be! Harumph!
What I’m really good at … and Minke is going to kill me for writing this … but what I’m really good at, is the wiping of the buttocks! I am very thorough. I want Minke’s butt to be spotless! This will be my claim to fame. Oh, lucky, lucky me!
Poop! There it is …
Yesterday was a good day. Minke went on a walk with me and Zelda and Molly. He went out into the garage for a little while to paint. And though this creates its own challenges as he adapts to what he is physically capable of doing, he’s doing it. It brings him joy. That’s all I want for him.
As for me, I just continue to try and steer this ship. I get off-course a lot. There’s a lot to manage daily. All I can do is all I can do, and I’m doing the best I can. Never been here before, never want to be here again. So, the day-to-day can certainly cause whiplash. I thrash around a lot. I’m reactive, not responsive most of the time. But I’m learning. And here it is … another day … what will this day bring? I never know.
March 27, 2023