u/Queenkermit57

TLDR; trying to determine if it’s Medicare or home health agency that’s the problem and if it’s worth it to try to find a different agency or we’ll get the same answers.
My mom just got home after a month in the hospital and an acute rehab. She went in to the hospital just barely able to walk for a fall and now is completely wheelchair bound and with a catheter. Coming out of the rehab, the social worker said in her experience she would qualify for somewhere around 20 hours a week, which would be really helpful for the bridge of finding long term care considering she needs assistance for every transfer, toileting, showering etc. the supervising nurse from the agency today came and told us 6 hours a week total for 2 hours MWF, we have no say on time and it can be whenever not consistent timing. He wouldn’t tell us straight if that was because that’s all Medicare covers or because of their staffing, she will also only be getting skilled nursing 2x a week for the catheter maintenance. Other big issue is they are telling us it’s a full week and half till some one can come; considering this is meant as a bridge coming out of a facility I’m alittle lost on how that’s acceptable, chances are we’ll already have an actual aide starting making this service kind of moot and also if they’re not able to give us a schedule a head of time there’s no way to plan coordination. I do understand her case is atypical for 2 reasons 1) she is currently in limbo on a diagnosis so we keep hitting a wall in a lot of places of things not being covers (they think it is probably als but she needs to get to specialists to confirm a diagnosis.) 2) besides the catheter she is mostly medically stable. I want to know if we’re getting f’ed over by this agency or it’s just Medicare itself that’s the problem. Secondary would be now that we’ve have the intake visit from this agency how much of a hassle would it be to switch if it really is the agency. We are in a major metro area and are more or less straddled between what is probably two territories so I’m thinking one that is more based out of our adjacent county could be better than this one.

My parents (early 70s) have gone from relatively independent to now needing most likely full time supervision and care since the beginning of the year due to my mom rapidly declining. I’m still in my 20s and have some help from family but navigating most of the big decisions and responsibilities on my own. My father was already not fully independent due to a stroke several years back and my mom ran the household, but she has more or less become wheelchair bound since January and is most likely on the brink of a terminal diagnosis that will keep her steadily declining. I have a great job that has been very understanding at me working remote a lot during this and my mom got a. aide who helps with stuff around the house and her personal care but it’s starting to get to the point where she needs help everytime she goes to the bathroom, getting in and out of bed etc so intermittent through the whole day. I think they’re are financially set up to handle the prospect of my mom needing full time care soon but I don’t have the full picture but was wondering what resources are out there to help plan for that. I’ve been debating once she gets a formal diagnosis taking a leave of absence/ quitting my job, not only to be her caregiver but get to spend as much time with her as I can while she’s still her but I know that can be a lot and especially as she needs more and more help I know there’s a point where I wouldn’t be able to do it my self. The other big thing with my dad that I hate thinking about is what is the best thing for him when it’s just him. Appreciate any and all advice from the financial side, coordinating in home aides and nurses and the prospective on becoming a full time caregiver.

It’s been about 6 months since my mom started with foot drop on her right side. She had a laminectomy but her whole right leg now is completely unable to move and she now as foot drop developing in the left. We’re three EMGs in all varying degrees of bad, and 2 rounds of completely clean mris. The neurologists can’t give us any other possible diagnosis but aren’t formally calling it als, as her last EMG put it: “The findings of this study are consistent with motor neuron and/or its axon dysfunction, chronic in the cranial and cervical
segments and ongoing in the lumbosacral segment.
This may indicate ALS, however lack of acute denervation changes in muscles of cranial and cervical segments are not typical. Suggest to repeat this study in 3-6 months, if clinically warranted.” In a waiting game to get her into a neuromuscular specialist called every practice in our area and earliest I could get is July. I’m hoping once they see her they’ll be more definitive and it’s just general neurologists being hesitant because it’s not a “textbook” case but I’m worried she’s going to literally not be able to walk at all before she has the diagnosis and the resources that come with that. I guess I’m wondering if anyone else has gotten to this “we’re not calling it als but we literally can’t tell you anything else it could be” point and it was not it? Also looking at PMA and asking doctors about that but it feels like general neurologists are very ill-equip to go any deeper than surface level on motor neuron disorders. Incredibly frustrating as well the wait times to see a specialist, some were telling me November or December till they could see her, how is that acceptable when you treat a disease like this???