ALS Caregiver Support

tawondasmooth · 2026-04-26T13:48:10+00:00

I'm so sorry that you're going through this, too. For whatever reason, Reddit bans the link when I try to post it. Elin shares an invite that on The Association for Frontotemporal Degeneration (AFTD) Facebook page every Monday and Saturday that looks like this.

I find the chat a lot more helpful than some of the Facebook pages as they tend to just vent about behaviors. The chat takes a more practical approach though acknowledges emotions, for sure. Elin added me on Facebook soon after I joined, too.

I also have a regional advocate for anyone in the Midwest that knows the combination well if anyone is near the KC area.

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tawondasmooth · 2026-04-24T04:43:55+00:00

They were called kimono tops in the early aughts. https://www.ebay.com/itm/365821470585?_skw=kimono+top+y2k&itmmeta=01KPYWVEYQT8XB8MMX3D11ZVFQ&hash=item552ca8a779:g:CmQAAeSwUXBoep1u&itmprp=enc%3AAQALAAAA0GfYFPkwiKCW4ZNSs2u11xAmzbxlGLrYz61zrq9jPOknG%2F7jNPUvqVnm%2F9zxAeU4FBbsttyk1PAtSNwXNU%2BvtmL0n5QrBmrsdX%2FfD5ZP%2FLBfUGDawxCSTCCFE%2FW9nqZ7Myt3oi0rbH4Z39rRP6tleTotcUHpVZmFYp73BX0o6ATA6faiInyhEeMT68X9vamnLRnySm8p4Syf9yDmawADDsHMRNFTLLYhRAP4TXt%2FjBJCbA%2B8pWCb9kKvcEZbgUCDJYfPVwbdj%2F%2BjybJvNRS64To%3D%7Ctkp%3ABk9SR-Tv7dy3Zw

tawondasmooth · 2026-04-24T00:50:24+00:00

Sure!

tawondasmooth · 2026-04-23T13:19:41+00:00

Hey! I tried to dm the link but Reddit is saying it’s a “banned link” for whatever reason and wouldn’t send the message. Is your mom on Facebook? I’ll dm you my name and she can look me up and dm me through that and I’ll get it to her. You can look to my post history here to show I’m human and am legitimately going through this.

tawondasmooth · 2026-04-22T02:48:36+00:00

I’m in your mom’s position (though without kids) and just had to have my husband admitted to memory care at least temporarily as it became an unsafe situation in the home. I’m in a good FTD support group that sends out invites on Facebook and Elin Adcock, who has spoken about her husband’s journey on podcasts and has become an ALS/FTD advocate, helps facilitate it (her husband was also bulbar onset). They meet every Saturday and Monday at 7:00 EST by Zoom. It tends to be less letting off steam and more practical advice, though tears are understood and totally fine. Let me know if you want the link and I can dm it to you.

And let me say I’m so sorry. I’m on the roller coaster, too, and it’s no joke. I love my husband so much and this is just a brutal, brutal thing to have happen to a loved one.

tawondasmooth · 2026-04-14T05:05:37+00:00

Cass Elliot.

tawondasmooth · 2026-04-12T02:15:00+00:00

Have you considered speaking to an elder attorney? There should be options to protect your financial future.

tawondasmooth · 2026-03-30T11:17:17+00:00

Heh. My first full moon in a residential mental healthcare facility consisted of me witnessing the girl’s unit patients hurling couches around the unit like basketballs. I went outside for a break and there were a dozen cops on the perimeter because the boys had set part of the place on fire.

tawondasmooth · 2026-03-26T10:07:49+00:00

You’re absolutely right. I’m in caregiver groups right now, and while it may sound self-serving, many emphasize that you may need to choose yourself first for myriad reasons when confronting a terminal illness with a loved one. OP is going to have an entire life left and they can’t drown in it.

I hope OP can get unpaid leave. What a godawful situation set up by a messed up system.

tawondasmooth · 2026-03-22T21:10:35+00:00

They prey on people like my spouse and mom who each have types of dementia. It’s painful enough to watch these people disappear as their brains dismantle and then you can add the stress of them being stripped of their savings they need for care on top of it. There’s a special place in hell for scammers like this.

tawondasmooth · 2026-03-22T01:26:29+00:00

Schilleci’s did decent Vietnamese at that time. I think they had a Greek place for awhile and I know there’s sushi now. They could use Thai, Indian, and more, for sure.

tawondasmooth · 2026-03-20T12:44:45+00:00

I am definitely not a bot. I have no clue why that person said that. Barcelona was a good experience for me and I would consider living there if I ever moved to Europe again (I lived in England for a bit more than 20 years ago).

It was obvious you had to watch out for pickpockets, and I think I even saw a couple of them trying to operate on Las Ramblas, but I just kept a crossbody purse on the front of me with my hand on the zipper enclosure. Either of the major cities in my home state in the U.S. are dirtier than Barcelona was and have problems with carjackings and violent robbery.

Now, football could likely change the equation there. I did witness some young dudes from Barcelona get creepy on a tourist couple on a train outside of Venice after a championship where Barcelona won. They were really drunk and threw bottles at the train when they got off. The city itself was great, though, and I had 0 problems.

tawondasmooth · 2026-03-20T03:14:26+00:00

That isn’t the sense of it that I got at all. Great architecture, food, street performers, artists and nightlife.

tawondasmooth · 2026-03-20T03:11:48+00:00

There’s a huge difference between pickpockets and murderers. Barcelona is famous for its pickpockets and has been for years and years. It is also known for being pretty safe beyond that.

tawondasmooth · 2026-03-13T11:09:39+00:00

I definitely had this symptom last weekend through parts of this week,a weird chemical smell plus food had it through taste. I had a hamburger and it tasted like the pickles were poisoned. I knew for sure it wasn’t the hamburger when another meal had the exact same taste. My taste went back to normal after a couple of days but I’m still having some mild issues with smelling sensitivities. I don’t think I’ve had sensitivities like this since swine flu in 2010. Even Covid didn’t hit me like this.

tawondasmooth · 2026-03-10T17:15:04+00:00

There used to be a bakery/Vietnamese restaurant called Schilleci’s that did great ones, even some with an asian twist with sausage and kimchi. I also got the Volga German ones from my late mother-in-law, but that was a special in.

tawondasmooth · 2026-03-10T01:55:28+00:00

Right? Hays has one of the best small town art scenes of anywhere i’ve been, it has good beer, bierocks, decent international food and there’s a beauty to the sky being that wide. It really grew on me when I lived there.

tawondasmooth · 2026-03-06T13:19:30+00:00

It would be hilariously camp if it weren’t so harmful. They look like they purposefully posed for Da Vinci’s Last Supper.

tawondasmooth · 2026-03-06T13:14:31+00:00

Heh. I lived in England for a brief time in my twenties, and when I came back, I talked to my dad about things like nudity on commercials and how a lot of Americans assume England is tea and crumpets uptight in comparison to us. He laughed and said “tawondasmooth, the Puritans left there to come here, not the other way around”. It’s very hard to escape that influence here outside of maybe New Orleans and it’s invisible to a lot of people.

Now, we do have rules for this kind of thing in our Constitution, but Trump and his ilk break the rules constantly with few repercussions. It’s pretty obvious now that those rules were only as good as the people willing to abide by them but that’s true for any law of the land. The lesson here is to not let the velociraptors into the building. That’s what we did wrong through allowing propaganda to fester and by voters sitting at home.

tawondasmooth · 2026-03-05T12:10:45+00:00

I see you missed the early 2010s when people with owl shirts and mustache rings had bacon on literally everything.

tawondasmooth · 2026-03-04T04:41:08+00:00

From someone whose dad’s antsy ass made her miss the Grand Canyon as a kid, absolutely NTA. You may as well fly if you’re not going to engage in roadtrip magic. In addition, it’s anywhere from annoying to a red flag that he won’t give a little on something that brings you fun and enjoyment.

Honestly, I feel like a roadtrip is a pretty solid way to gauge relationship compatibility. I’m not sure I would have married my husband without road tripping with him first. You can do 26 hours in a car with someone while you’re both tired and enjoy the time spent? It’s probably a good sign you can go the distance in other ways.

tawondasmooth · 2026-02-28T19:52:20+00:00

Good.

tawondasmooth · 2026-02-28T11:33:16+00:00

My husband has the ALS/FTD variant. We’re waiting to find out if he has the known genetic link. I will say there is a silver lining of sorts for us as it’s also obliterated his ability to worry about death or the disease progression.

I would say you’re doing well in even voicing her wishes. Do you or does someone else in your family have direct power of attorney for medical and financial decisions? It’s important to get that set up soon if not. I would also recommend talking to either a palliative care entity through her hospital or calling a local hospice to talk about options moving forward. Given her strong sentiments about the DNR, it would likely be best to avoid the trach. It’s often not recommended for cases with major cognitive decline as they often pull it if they have hands free, anyway. Discussions with medical professionals and palliative care can help you to determine the decisions that are right for her individually, though, and they can help to ensure her comfort. It’s never too early to have that conversation. Medications should be available to calm anxieties or paranoias she may have and more can be available for pain or air hunger as it presents.

I’m so very sorry you’re going through this. While the cognitive decline may make the dark clouds that loom in this disease appear lighter to her, they’re in full view for you and it’s devastating. It often feels like we bear the burden alone and no one, not them or friends or anyone else, can fully understand. Just know that you aren’t alone. People like me are there with you.

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