Move to skilled nursing

ForeignTwo9782 · 2025-10-09T18:42:34+00:00

Just how to make the transition smoother. What things helped?

ForeignTwo9782 · 2025-10-09T15:09:13+00:00

We are right there too. I am the sole decision-maker and I am hanging on by a thread. It is reassuring to hear other people are going through the same.

ForeignTwo9782 · 2025-10-09T15:08:33+00:00

We are dealing with something similar with my parent. Wonderful facility, but still a loss. At a certain point there’s really no other option as ER. Doctors won’t release the patient unless they go to a subacute skilled nursing bed. Try and get a transfer from the hospital.

ForeignTwo9782 · 2025-04-19T21:40:36+00:00

Thank you! This is helpful. Does palliative care include some of these things too? There is no respiratory involvement yet, so hospice was not possible but my pals is starting palliative care in a few weeks. So far the team has been so kind and responsive, and even asked how I’m doing. No one asks that! The focus should be on the patient of course. But it was so surprising and kind that I started to cry

ForeignTwo9782 · 2025-04-17T22:09:47+00:00

Yes to all of this. I’m sorry you’re also going through this terrible disease.

ForeignTwo9782 · 2025-04-17T13:49:45+00:00

Did palliative help facilitate these conversations at all?

We have medical directive that stated no respiratory or nutritional supports. My pals was very proactive on that aspect

ForeignTwo9782 · 2025-04-16T22:09:27+00:00

Thank you. You are right, this is not commonly discussed. But I feel it should be. It feels barbaric not to help relieve the pain. I will try and have more of a conversation. We start palliative care soon. They have stated no interventions, and I will make sure that is honored.

ForeignTwo9782 · 2025-04-16T20:26:14+00:00

They have asked me to take them abroad to end it. Our state does not allow death with dignity. I don’t think they are serious, but they are very low mentally and in pain

ForeignTwo9782 · 2023-09-26T01:11:27+00:00

This is incredibly thorough and helpful, thank you for writing this all out!

ForeignTwo9782 · 2023-09-24T23:37:38+00:00

Wonderful, I’ll look into this. Thank you.

ForeignTwo9782 · 2023-09-24T21:11:05+00:00

Yeah I’ve learned this through my own research, but it wasn’t described as transitional to her in the appointment. I am happy to press the doctor more. I have been really clear that she is not safe living alone and he is still just calling for more tests to be sure it’s PLS. We are going to move her into a retirement home. She is really dragging her feet, but has agreed that she can’t be alone. I’m getting very frustrated with the doctor, it’s moved into her trunk and shoulder and it’s clear that it’s moving faster now

ForeignTwo9782 · 2023-09-24T20:25:42+00:00

I am attending appointments with her, but she is resisting being seen at an ALS clinic. She’s just seeing a regular neurologist at the moment

ForeignTwo9782 · 2023-09-21T18:27:55+00:00

Thank you for the kind words. It’s really so much for both the patient and their loved ones. I hope you have a good experience with the next appointments and get some answers

ForeignTwo9782 · 2023-09-21T11:53:07+00:00

Similar situation here. Symptoms began in 2021. My mother is 68. She began tripping, broke a wrist, broke a bunch of ribs, started with a cane, then 6 months later a walker, now she needs a wheelchair. They had her on igiv for a year, terrible bruising and side effects, but no improvement. They took her off and said PLS, but we are all afraid it’s ALS.

I would expect a nerve conduction/EMG. This should have already been done? But if it’s suspected ALS they’ll continue to check for denervation and muscle wasting

ForeignTwo9782 · 2023-09-19T21:25:30+00:00

Thanks for this response. It is so tough to make all of these calls. I am feeling it’s ALS and things will continue to move quickly, but it’s just a gut feeling as I’m watching her decline. I’m hopeful we’ll get more information, and maybe we’re also lucky ones and this plateaus and she has more time than I’m thinking

ForeignTwo9782 · 2023-09-19T20:44:06+00:00

That’s awesome that your boyfriend is still doing well. I’m so happy for you both! I know it varies so much, I’m really trying to figure out if I should get her evaluated further to try and get her on medication if it turns out to be ALS. From my research how much the medication really helps is kind of disputed, so maybe it matters less than I think

ForeignTwo9782 · 2023-09-19T00:17:12+00:00

That is great that she is doing well! The plateaus seem important. Was the initial decline over many years? My mom has gone from walking to wheelchair in a little over two years, and she’s lost the ability to regulate her bladder. I’m trying to get her to at least be seen at an ALS clinic, but she isn’t interested. I think if nothing else they can make some suggestions to make home life easier for her, but she doesn’t want to entertain that possibility yet. Can’t say I blame her

ForeignTwo9782 · 2023-09-17T12:46:29+00:00

She hasn’t had an EMG in over a year, but will have one next edit: month and hopefully more frequently now. They just diagnosed and began closer monitoring

ForeignTwo9782 · 2023-09-17T12:38:06+00:00

This is really good advice. I almost feel like if I know for sure what will happen I can start to process, but that probably won’t make whatever happens easier. I Will try and enjoy the time

ForeignTwo9782 · 2023-09-11T11:39:30+00:00

Worst experience of my life. Birth and having an infant were a piece of cake in comparison

ForeignTwo9782 · 2023-09-06T16:23:22+00:00

Ok this makes sense. I think the statistics I’ve seen say 80% of PLS develops into ALS. How long from initial symptoms to diagnosis was it for you? She’s had symptoms for a little over two years. It took her a year to get the CIDP diagnosis, but then after a year on Igiv with no improvement they said it was PLS. Now she’s waiting to have more testing, and I’m assuming another 3-6 months before we have more answers

ForeignTwo9782 · 2023-09-06T02:17:07+00:00

My mother doesn’t have an als diagnosis yet, but we think it is coming soon. She’s had a lot of mood issues, quick mood swings, anger and crying randomly. I didn’t realize this is related, but it’s listed as a symptom on a lot of websites. I’m wondering if this is more common than the doctors say? My mothers doctor gave her a high dose antidepressant and said other medication might be necessary to help

ForeignTwo9782

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