For better or for worse...

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I'm sorry to hear that Gina is not as she was, Jim. Forcing a PALS -- well, anyone, to consistently wait for toileting is not acceptable.

I wish I could say that there is an additional Medicare benefit at 65, but there is not. Absent new health conditions that I hope she will never have, the care that Darcey needs is still considered "custodial" and not covered.

If it were me, I'd start interviewing new candidates. Or if it would not be catastrophic if Gina walked off with no notice, you might have a frank talk with her -- with all three of you present -- to try to understand if there is a root cause that is fixable.

Best,
Laurie
 
Laurie,

You were right. There are "underlying issues". We've been treating her with kid-gloves of late and we were hoping that her vacation away from us, next week, would allow her some regeneration. Unfortunately, today she gave her notice. She has some health issues and the pain associated with those issues has apparently gotten to be too much. So we agreed that Monday would be her last day (I was going to give her Tuesday off as a paid day to get ready for her vacation on the 22nd thru the 27th, anyway).

Don't know what/how we'll make it all work, but I have ALWAYS managed to make things right. No reason to believe that I'll fall short, now. [MORE JIM GIVING JIM A PEP TALK! LOL]

Thinking of you, Max... IIWII !! :)

My best...

Jim
 
Jim,

ive a lot to catch up on First and foremost I am thrilled that your back had healed nicely and you had a wonderful respite during that time.

I was going to write something else about Gina, but you popped in with the answer before I could. I’ll be praying the right person comes along. I def know how grueling the long days can be.

Maybe your son will stay an extra week or two while you find someone and get them up to speed.

You certainly have been blessed during your surgery and healing.


hugs
 
Jim I believe that a wonderful door to new help will open for you now. IIWII indeed and the acceptance of this helps us turn to embrace new things we didn't know were possible. 💗
In some ways it is good that she has resigned as it saves you working out what you should do.
 
Sunday was to be Gina's last full day as it ended the week that she'd already been paid for. And she said that she would come in on Monday morning to give Darcey a sponge bath and a change of clothes. Gina normally arrives in the mornings by 9AM. This last Sunday, I didn't hear from her until 9:11AM when I received a text that said, "I think I have the flu." I texted back but didn't hear anything more until the next day when she texted again, "I am still running a fever."

We've had several quiet days with Gina gone. I've managed to do all of the toileting and some of the bedtime routines. I'm much more sore this week as I'm probably doing more than I should be. But Darcey, Jim and I have all seemed to be in really good moods.... with much laughter and tomfoolery going on.

Our friend Natalie came by on Monday to keep an eye on Darcey while Jim and I made a Costco run. We laughed that we were paying Nat to come watch Darcey (which she did for 4 hours) so we could go to the store to get the supplies that we needed for guests that we were having over for dinner the next night. John and I both have birthdays a few days apart in January... so we often do a January get-together to celebrate. Natalie and John are married... and were our Tuesday night dinner guests.

On Tuesday, Nat asked how we were doing with finding someone to fill in for Gina. We had one lead... but hadn't yet called that person to see if they still did home health care. Nat then said, "You know I've been working 4 hours a day for several years with a lady. Her care needs are changing so they won't be needing me anymore. If you'd like, I can fill in for the short-term until you can find someone else. And once you've retrained me (Nat helped in 2016 when I went to New York City to see David Gilmour with my son), I'll get Kim in to train as a backup (Kim also helped while I was gone in 2016)." Natalie will be coming in 3 days a week (as Gina had been before my surgery). Today was her first day (she's here, now).

So YAHOO!! Again, it has all worked out. Thank you all for listening! :)

My Best...

Jim
 
So happy for you, Jim! Sounds like a great arrangement!
 
I’m secretly glad for you that Gina is gone.
 
I'm having a little cry Jim - I KNEW the right person was nearly ready to step in! so beautiful
 
Dear Jim, sounds like things are falling into place for you and Darcey. Good for you both. Hope you have some smooth sailing from here forward.

V
 
Sounds like an upgrade -- glad things are coming together. All our best to Darcey.
 
Congrats Jim on the wonderful help.
 
Jim, I'm so glad that things are working out for you.

Sharon
 
Jim - how are things working out now, I've been thinking of you a lot lately.
 
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
 
Jim,

I know I've said this before but YOU are the best CALS ever. I'm jealous you got to see David Gilmore. I love him and he got better with age.

God bless both you and Darcy. I'm so glad you're healing up.
 
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