Tillie,
When I titled this thread as "For Better or For Worse...", I didn't realize how insightful that heading would prove to be.
Prior to going in for my back surgery, we'd had Gina come in for 4 hours three times a week (11:30AM to 3:30PM). When it came time for my surgery, Gina was here to get Darcey up in the morning and here until she'd put Darcey into bed at night. As I began to feel better, I'd send Gina home in the early afternoon and tell her to not worry about coming back until 5 or 6PM. At 2+ months post-surgery, it was getting time to reclaim the majority of the caregiver tasks, again. I was procrastinating on the decision of "when" that reclamation would begin when Gina quit.
As mentioned earlier, our friend Natalie was willing to "fill in" until we could find someone permanent. Darcey was loving it! Nat was one of Darcey's "besties" and had been for many years prior to the onset of ALS. And Nat seemed to be enjoying her time, here, too. So I made a decision for ME... and asked Natalie if she'd be willing to actually be (not just fill in as) Darcey's regular caregiver. I told her what I had in mind... and then told Darcey what I wanted to try. Natalie's reason for suggesting that she'd only fill is was because summer was coming and she typically spends a week at the beach during each month of warm weather. I said that I'd either fill in myself or find someone else during those times... so, for me, that was not an issue. They both agreed that it just might work out well.
Gina had been coming in 3 days a week for 4 hours each of those days. I needed more help than that. I proposed that Natalie come in at 9AM to get Darcey up and ready for the day. That typically takes two hours. Nat's Mom is in a nursing home and Nat tries to see her for awhile each afternoon. So after Darcey was up, fed and set up in front of her Eyegaze computer, Nat leaves to see her Mom and to run any errands that she might have. She comes back 3 hours later and stays until 5PM. AND... we do this Monday thru Friday.
I've gone from 12 hours a week to 25 hours a week. I can get up at any time in the morning... 5, 7, 9... it doesn't matter... and go right in and begin working (I run my business of 30+ years from home). Sometime before Natalie gets here, I get in some "hug time" with Darcey. But at 9, I get out of the way as Natalie begins the weekday morning routine. Most days, Nat leaves about 11 and returns at 2. On sponge bath and change clothes day, it is more like 9 - 11:30 and 2:30 - 5:00.
Darcey likes to be on the computer during that 3 hour time when Nat is gone... and I spend time in my work area. I'll get up and check on how Darcey's doing every 20 - 30 minutes. Most times she's fine. She smiles at me checking on her, I sneak a kiss to renew the sparkle in her eyes and I go back into my office to work. I'll likely do a Jevity feed and a potty trip sometime during those 3 hours. And then Nat is back to finish out the day.
I can't even describe how much better I feel. I'm getting work done that I wasn't getting done before. I'm more likely to go to bed at a reasonable time and get the sleep I need... where I'd previously try working late or getting up much too early in the mornings. My personal stress level is much reduced. Sleep... less stress... makes Jim a much nicer person to have around.
But with all good things comes the not as good. Darcey's voice is often little more than a whisper, now... and is more of a muttering than a careful pronunciation of words. I work diligently to ask her questions that she can answer with a "yes" (she flutters her eyes) or a "no" (she closes her eyes). But she often wants to elaborate and say more. When she does that, we can spend handfuls of minutes with repeats and attempts at spelling out words. She's so determined that she's going to speak that I find I'm equally determined to patiently work through my attempts to ultimately understand what she's trying to say. Often we'll laugh at how silly we've both become with such a difficult process.
Her ability to communicate by voice was one of the last precious abilities that she'd been able to keep from ALS. That it is almost gone scares me to the core. I'm concerned as to how much I won't be able to do for her because she can't communicate it to me. During the day won't be so bad... as she's often in front of the Eyegaze computer and can "talk" with it. But like everything else that has come with this nasty disease, we've always found ways around an obstacles that have attempted to block our way. Somehow, we'll work through the loss of her voice.
There are other things that scare me, too. But they are not immediately in front of me and in my face. As such, I'm able to move those things elsewhere in my mind... to back places where they can be quieted to relentless whispers... momentarily ignored but not gone.
Thank you, Tillie, for the "ask". I'll pop on from time to time to read but rarely feel that I have the time to post. Often it is that someone else in need that encourages me to take a moment to post. Or, as in this case, that dear friend who says, "talk to me, Jim".
Thanks!
My best...
Jim