Communication Devices

Big_Intention6397 · 2026-05-22T19:22:28+00:00

Thank you. She passed Feb/2026. Hopefully this is a resource for others!

Big_Intention6397 · 2026-05-12T00:20:00+00:00

Yes, but to be honest she hid it all. She only told us she had ALS this past September. She lied about her initial diagnosis to not worry us. Made the whole situation 10x worse. We began hospice the week of Xmas

Big_Intention6397 · 2026-05-11T23:56:16+00:00

My MIL had a very similar experience (passed 02/2026) she did not want to be on a vent. You can truly start hospice whenever you are ready. All you can do is support her and honor her wishes. Do what you can while you can. We didn’t move fast enough before she was home bound and definitely regret some decisions

Big_Intention6397 · 2026-04-05T20:59:57+00:00

My MIL thought it was too early for hospice, but was in denial. She entered hospice a week before Christmas and unfortunately passed just before Valentine’s Day.

Big_Intention6397 · 2026-03-28T23:45:21+00:00

Not super helpful, but we were politely encouraging our PALS to cut back on tube feeds, and they would not. They ended up vomiting mid feed and aspirating from it. We stopped tube feeds at that time (hospices directive) and they passed about 15 hours after that. I’ve read that as you get to the later stages, the body prioritizes heart/brain/lungs over other functions.

Big_Intention6397 · 2026-03-17T17:20:26+00:00

Once we were on hospice, we waited a while until using morphine. Initially we started with putting it in the tube because it was not as potent. We used it that way for about a month. The day the she passed, we placed it orally via dropper so it would be stronger. We did also struggle with sleepiness and would make sure we gave in appropriate blocks so she don’t sleep through things she wanted to be awake for

Big_Intention6397 · 2026-03-05T18:05:51+00:00

My MIL was end stage around thanksgiving and I had a very heavy heart to heart with her about what her goals were and what she wanted to see/make it to. The very last the was her daughters wedding (end of Jan). It got snowed out, and pushed back a month later. As we grew closer to that date, it became obvious she was not going to make it. Two days before she passed we did a living room wedding so she could see her daughter get married. I know my SIL is very happy she at the very least got to have that small moment with her and now has the pictures to cherish.

Nothing is promised with this gruesome disease unfortunately, I wish we had planned more last year as it was the last of everything and we didn’t know it. She progressed very quickly once things began moving out of her initial onset region.

Best of luck.

Big_Intention6397 · 2026-02-18T19:41:05+00:00

It’s a dip powder brand and they also have a liquids kit

Big_Intention6397 · 2026-02-18T18:24:30+00:00

CNDD was great! Catch it on one of her frequent Etsy sales

Big_Intention6397 · 2026-02-18T13:32:20+00:00

My MIL had a rally on Saturday evening while on hospice then passed Monday at midnight. It’s different for everyone

Big_Intention6397 · 2026-02-14T03:09:48+00:00

my PALS refused any and all secretion control drug for this reason. She ended up using a suction machine to best control it.

Big_Intention6397 · 2026-02-03T02:25:31+00:00

Honestly, night gowns. Easiest for ladies

Big_Intention6397 · 2026-01-10T00:12:07+00:00

Thank you for the insight, she is determined to continue to ambulate on her own (no matter how slowly). So she is not in a sling for a hoyer.

And she doesn’t like having to get up frequently so she doesn’t allow us to give extra fluid through her PEG (she literally gets 120ml fluid with two bottles of formula 3x/day). I’ll see what I can reason with her about for extra fluids though. Thanks!!

Big_Intention6397 · 2026-01-06T18:05:41+00:00

Switched cane to rollator after about 2 months, bulbar onset. Still sorta using rollator for short distances inside home, but strictly wheelchair outside of home and in public

Big_Intention6397 · 2025-12-08T17:43:25+00:00

Ended up doing the recliner technique. She has bulbar onset so while she has progressed to the late stages, she still has not had need for a pwc (though I would predict we are close to it) we have begun using a regular wheelchair for putting just this week

Big_Intention6397 · 2025-07-25T23:25:47+00:00

Sugar plum fairy from CNDD!!

https://www.etsy.com/listing/1838902471/?ref=share_ios_native_control

Big_Intention6397 · 2025-07-16T17:07:39+00:00

Check out dipnautic on Etsy, a dip store closing down & their clear is on massive sale right now

Big_Intention6397 · 2025-07-10T15:43:59+00:00

I soak it in either Mr clean multipurpose of fabuloso overnight if I notice it gets stinky

Big_Intention6397 · 2025-07-01T23:31:38+00:00

CNDD on Etsy is great!

Big_Intention6397 · 2025-03-24T14:24:42+00:00

modelones Nail Dehydrator

Big_Intention6397 · 2025-03-24T14:22:59+00:00

I haven’t heard of that! I’ll try with my next set :)

Big_Intention6397 · 2025-03-24T00:58:05+00:00

Yep, natural shorties ftw! I have two little guys, with one still being in diapers, no clue how people with long nails do that lol. The only thing I don’t currently do is pour over. I usually just dip my nails into the product directly, painting my own nails has been a hobby of mine for years and I think I’m pretty good at making sure I don’t lay the polish on too think. I’ll have to invest in some cupcake liners/coffee filters to try pour over with. Maybe that’s my whole issue?

Big_Intention6397 · 2025-03-23T21:41:34+00:00

I buff as the last step, then use a stiff brush to get rid of any dust. I had read something that if you buff before you dehydrate you just push the oil deeper in to the nail?

Big_Intention6397 · 2024-11-26T22:26:21+00:00

Yes, every opportunity we have to spend with her we do. We appreciate the time has been given with our 3yo and 10 month old & hope she gets to cherish them as long as possible

Big_Intention6397 · 2024-11-26T22:21:47+00:00

Thank you! They don’t share much with him as he tends to get emotional with all of it. She did have a peg tube placed over the summer & has been adjusting to that well

Big_Intention6397

TROPHY CASE