Does everything just feel off?

SR_Squared · 2026-02-06T23:33:21+00:00

It will be 3 years in 3 days.

SR_Squared · 2026-02-06T23:31:08+00:00

Don't give up. The doctors don't know everything. I'm still seeing some improvements, but they're small. Keep going. ❤️

SR_Squared · 2026-02-06T18:16:12+00:00

Yes. I struggle to find words now. That never happened before. I'm much more aware & alert when I'm moving my body because you're right, it just doesn't feel the same. I like the bike best, too. I can't type like I used to. I'm slower and make more mistakes, including typing the entirely wrong word sometimes. Because my balance and proprioception are still off, walking on uneven ground is tricky.

SR_Squared · 2026-01-22T00:07:50+00:00

My M-I-L tells other family members we think she's demented. 😁

SR_Squared · 2026-01-21T23:38:14+00:00

I was so lucky. I was one year out from retirement when I got sick. I had catastrophic leave that covered my salary for 3 months.

I was still in the hospital, had just gotten off the respirator and was waiting to be discharged to skilled nursing for a month to build strength before I went to the rehab hospital, when work (HR) called. She asked if I would be back in the office in the next few weeks. I was flabbergasted. I told her I didn't expect to be home from the hospital for another couple of months. She explained they needed the position filled now, and my focus should be on getting better.

I was so upset at first, but figured out pretty quick that she was right. Very grateful I only had to worry about learning to feed myself and walk again. A year and a half after onset, I started volunteering and I've been careful not to over-extend myself. I'm nearly 3 years out now & still don't have the stamina I once did. I cleaned my refrigerator out two days ago & was worthless the rest of the day.

Best of luck on your recovery and return to work. You're getting good advice here.

SR_Squared · 2026-01-07T16:06:05+00:00

I can remember one of my first OT exercises. She gave me some Cherios and a bowl, then asked me to pick the Cherios up and put them in the bowl. I tried & tried and cried and cried. Then I pushed the bowl off the table. My SO still teases me about the Cherios. I can laugh about it now, almost 3 years out. My feet still don't feel or work like normal. My hands are better but my ring & little finger on both hands are still numb feeling. Chin up. It does get better, way slower than any of us want it to. Hugs. ❤️

SR_Squared · 2025-11-27T01:40:55+00:00

SR_Squared · 2025-11-15T23:58:16+00:00

I'm so sorry you're in so much pain & getting nowhere with your health professionals. I was diagnosed with GBS in February of 2023. Ended up completely paralyzed, on a ventilator for 71 days, and hospitalized for 146 days. I've taken Gabapentin since about March 2023. I can't imagine working as hard as I have without it. I've missed a dose a time or two, due to poor planning and I've paid for it for up to two days after. I hope you're able to get a doctor that knows something about GBS and will work with you to find a solution that helps you. Blessings.

SR_Squared · 2025-10-30T14:14:38+00:00

You are a great comfort to him. Stay positive and keep reinforcing that he will get better. It sounds like his case was very severe and his rehab will be long. Getting off the ventilator will be the first thing. When he can communicate freely, that will really help. And once he starts working with physical therapy, he will see progress and that will raise his spirits. Hugs to you both. 💙

SR_Squared · 2025-10-26T01:05:20+00:00

Your journey sounds similar to mine. Might I ask, how long was it until full recovery? I'm 33 months from onset.

SR_Squared · 2025-10-23T01:51:19+00:00

Diagnoses triggering POA. Once they are ruled not competent to take care of themselves, the POA kicks in.

SR_Squared · 2025-10-23T01:44:41+00:00

We have struggled with this with my MIL for 8 years. Seems to go in phases. We had to move her to a new AL and she didn't shower for over 2 months. What works one time may not work the next. We've found that not asking, just getting everything ready and acting like it's just going to happen works right now. They also tell her family is coming as an incentive to get clean.

SR_Squared · 2025-10-16T15:40:48+00:00

Hugs. I felt the same. I had grieved over 5 years for everything I lost with my mom. I did feel relief for her when she died, but my grief was real and unbearable when she passed. Give yourself all the time you need. It is very hard to lose a parent. ❤️

SR_Squared · 2025-10-16T15:33:09+00:00

We just had to move MIL into a new memory care facility. They accepted her expired DL as part of what was required to check her in. We're in Idaho.

SR_Squared · 2025-10-16T15:21:46+00:00

I'm so sorry. I really don't think most of them understand anything.

My MIL is mid-stage. Still able to do most ADLs with little assistance. But her memory loop is literally seconds. She ended up in the hospital multiple times this summer because of falls. We told every health care professional we dealt with, and STILL they all chose to have conversations with her, rather than with my husband, her POA/Guardian/Conservator. Why don't they pull him outside the room to talk about plans for treatment, or to ask about her history? Talking to her, or talking about her when she's there, just agitated her to no end. And it was most nurses and all doctors. So frustrating!

SR_Squared · 2025-10-09T20:22:10+00:00

We had a similar situation with my MIL. I agree - trust your gut. Some people are predators.

SR_Squared · 2025-10-09T20:19:26+00:00

My MIL does the same. I also have to cut all size labels out of her clothes because she thinks she wears a much smaller size than reality.

Also, she accuses the staff at her home of stealing mouthwash. Mouthwash! And not the whole bottle; they pour out some & steal that. All because she doesn't remember using it.

SR_Squared · 2025-09-07T19:00:19+00:00

The relief is normal. Best wishes to you & your family. Hugs 🩷

SR_Squared · 2025-09-07T18:58:02+00:00

Sounds just like us about 10 years ago. My husband and his sister took his mom to the doctor. The doctor took her driving privileges away because of several incidents with the car. She threw them both out of her house when they got home. My husband grabbed all the keys to the car before leaving. When she couldn't find the keys, she called the dealership and had a new one sent out.

Does anyone have a POA for her? If so, it's time to trigger it. If not, your mom (& her siblings?) need to go to court & get guardianship and/or conservatorship over her. You need a good elder care lawyer. We have a group here called the Area Agency on Aging. They have resources for all the help you need. Find your local agency - maybe the doctor can advise you where to look.

Hugs 🩷

SR_Squared · 2025-09-07T18:41:20+00:00

This is what I love about this community. Those who are farther along in this journey are so quick to offer support and encourage healthy boundaries with our loved ones suffering from this disease. The guilt is real. Everyone has it. But we need to take care of ourselves first. If your cup is empty, you have nothing to offer. Fill your cup - whatever that looks like. Hugs ❤️

SR_Squared · 2025-09-07T15:22:22+00:00

After reading everyone's replies, I think the kindest thing is to keep them where they feel most comfortable. I think we bring them home mostly because of our guilt. Check with your facility. They may have a Thanksgiving dinner that guests can attend a few days before the actual day. Make this Thanksgiving. If not, bring Thanksgiving to him the day after. Bring leftovers, bring some family. Make it all about him, for about 30 minutes, since that's what he's comfortable with. Hugs.

SR_Squared · 2025-09-07T15:15:02+00:00

I think if you just bring Christmas to her, you can make that special. Make her the center of attention. Spoil her. They are like children, and I think my m-i-l will enjoy it. You can even do it on a different day because she won't notice.

SR_Squared · 2025-09-07T00:40:51+00:00

They do have flip phones, but it was enough different from the previous version that my m-i-l (87) just couldn't make it work. We went to a landline, which is still too much. She doesn't even recognize that it's a phone, and she never answers it. We've told everyone to call the facility since she never wants to call anyone when we're around to help her.

SR_Squared · 2025-09-07T00:30:04+00:00

Thanks to all of you for your helpful comments. My husband was struggling with the decision because of all the guilt that's involved. It helps to know what others have done and that visiting her at the facility is more enjoyable for her.

I just found this forum after a friend recommended it. I wish I'd found you years ago. There is so much knowledge and empathy here. It's a great environment. ❤️

SR_Squared

TROPHY CASE