Stressed out. Feel like we're being railroaded into providing 24/7 care.

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Two weeks ago my MIL took a minor tumble from her wheelchair. Due to some pain in her R. hip (which she didn't tell us about unti 24 hrs. AFTER the fact) we had her transported by ambulance to the hospital ER for X-rays. No broken bones were found (not even a bruise) but the ER doc wanted to keep her overnight so she could be evaluated by a PT in the morning. Whatever was causing the pain she was feeling I don't know, but it was clearly impeding her ability to make transfers, so we figured no harm in that. Next day her case worker called to tell us that the PT felt she'd benefit from a few days in rehab - no harm in that either. Problem was she hadn't been in the hospital long enough for Medicare to cover a transfer to a sub acute rehab close by, so instead they located a bed for her at an acute rehab facility an hour away. MIL didn't like that it was so far away but we figured it was only for a few days, so we agreed. While there she rec'd 2 PT and 2 OT sessions/day, which tuckered HER out but we were fully on board with...figured anything they do to help her was welcome....until we found out the goals they had set for her were totally unrealistic. A year ago her neurologist determined that further attempts at walking had become too risky, and she should concentrate on just maintaining strength to make transfers from now on. So what goals do they set for her, after working with her for less than a week? "Stand longer"(independently) and "start walking". Then when it becomes clear to them she cannot meet these goals they determine she needs 24/ 7 care, and dump the decision into our laps to either send her to a step down facility or arrange for 24/7 care at home. Until now she has been pretty much "on her own" living at home - I say pretty much because we live right around the corner (and can actually get to her considerbly faster than local emergency services), she has a lifeline button she wears all the time (calls it her "tinker bell" LOL), and we check in on her several times each day...prepare her meals, help with dressing/ toileting etc...and right up until this happened she was making her own transfers with no problem (this fall did NOT occur in the process of a transfer). It wasn't a perfect system but it worked, for her and for us. She was able to maintain a sense of independance (even if most of it was an illusion) and we were able to maintain our place of refuge. Sigh.
Given the brief time frame we had to work in and the fact that we had no immediate "magic" plan in place for 24/7 in-home care we had no choice but to opt for the sub-acute facility. So that's where she is now. She lost several pounds during her stay at the acute facility, not because they didn't feed her - quite the opposite! They TRIED to "beef" her up with supplements (which she hated), encouraged her to snack, allowed her to order whatever she wanted for meals (and she did - boy, she did!)...the problem was they left her to fend entirely for herself. Due to problems with manual dexterity she has a very hard time with packaging, and she can't cut food well a result her trays were nearly as full when they took them away as they'd been when they gave them to her! She looks haggard, fluctuates between depression and agitation, and seems more confused and forgetful than she's ever been (all in just two weeks!)
We're hoping she won't have to stay at this facility for long. We're hoping they will work with us (they do have weekly "family meetings" we can attend with MIL and they decisions about her care), and we're hoping we can get her back home and back to her old familiar routine soon. If they want to order in-home PT and OT upon discharge then great! If her social worker can offer more options to increase the level of care we're already giving her at home, greater still! I just honestly believe she should be allowed to return to her old routine, AND I believe she would improve in every possible way if she was...but I also fear we're gradaually being railroaded into a major change in circumstances. I'm not ready for this. I don't know how to deal with these people. Any advice or input would be welcome.


Geez, Yaya, that sounds weird. I mean it sounds shady-like they are trying to milk the system but I don't know -do people in the business do that shady stuff? If you think you MIL is not thriving in her environment can you get an evaluation from Adult Protective Services? I would at least give them a call and have a chat with them. I bet they could give you some good advice. I wish I had better advice for you (sigh). Sending you hugs ------there did you get them????
Yaya~From my experience with Alz/dementia, something like what your mil is going through, causes them to progress in the disease. My husbands grandmother was doing fine, walking, talking feeding herself, then one evening my mil took her back to her home after dinner. Grandma fell in the bedroom and spent the night on the floor. Mil called my husband to break in her house to check on her because she wasn't answer the phone the next morning. She had no broken bones, she just fell and forgot how to walk. Rehab didn't help her, she had progressed to the next level of the disease. It can happen that quickly. I hope this is not the case with your mil, get second opinions or take her back to the neurologist for an evaluation. I know this is hard to deal with so hang in there and hugs to you!!
Hi Mishka! Y'know it's so weird you went with "shady" cuz I was kind've thinking that too, but I tend to be skeptical and distrusting about such things anyway so I figured it was just me being paranoid. It just seemed to evolve so fast! When we left her at the hospital that night we half expected the hospital would be calling next day telling us to come get her, and next thing we knew she was getting shipped off to a rehab facility an hour away! (I've got some stories to tell about her stay down there that I'll save for another post - let's just say they won't soon forget her LOL) I certainly hope that isn't the case (the "shady" stuff)...but I harbor a similar distrust for APS...well, maybe not distrust exactly...I fear biting off my nose to spite my face. I think we'll give this new place a few days to a week and see how it goes. At least it's closer so I can visit her often, observe her therapy sessions, interact a little with the nurses and get a sense of what direction this is all heading in, which I could NOT do at the first place.
Yes, I got the hugs!!! Feeling them as I write....thank you!!
Sharynmarie, I have of heard of sudden declines like that, and I hope that isn't the case with MIL too. I'm going to sit in on a few of her therapy sessions and see how she does....that should give me a pretty good idea whether she's gotten worse or there's still hope. I will say she's a stubborn cuss...if she still has the will she'll find a way! Thnx so much for your words of encouragement - they mean a lot!
Yaya~Good for you in going to check it out yourself!! That is the best way to determine for yourself. Let us know what you find out and I'll be thinking about and your mil!!
i think there is a horrid conspiracy going on in the usa right now to institutionalize every elder possible. face it, law enforcement and elder care are the only thriving industries left. our politicians sold our jobs to malaisia, singapore and china.. yea im simplistic. some things only a simpleton can see..
sure i would be on board with my mother leaving my killer broccoli soup and homemade bread to be cared for by pill popping welfare - to - work b*****s. ( sarcasm )
Cap~You are very funny, so funny I am spewing noodles out my nose, Hahaha, Lol!!
No need for the parentheses cap'n, I could smell that sarcasm from here! LOL!!(and the broccoli soup and home made bread too...mmm!!!) That's EXACTLY how I feel tho...we were taking good care of her, she lacked for nothing and she was always ALWAYS safe and I almost feel like these people who have no idea what we've done for her over the last five + yrs. have decided it's not enough anymore. I explained to the case worker over the phone about how she does her transfers at home and all the hand rails and other safety measures we have in place and she listened oh so patiently, then basically just rolled right past it in that patronizing "well that's all very nice, but we're professionals and we know best" way they all have. P....d me right off! I bit my tongue tho cuz she was still in their care, and as maddening as it gets sometimes I do believe it's true about honey catching more flies. I think it was Sun Tzu who said "keep your friends close and your enemies closer." Wise man.
BAHA Sharyn!! Spewing noodles out your nose....even funnier!!!!!!!!
"24 hr care" could be video & a baby monitor, right?
At some point she WILL need more care, but the illusion of independance is a huge motivator too, Don't fool yourself - she could fall in a facility too, & be less happy for the rest of her life.
Other option -- 6 person Board & care? Might be a better eventual option & get her out of where she is, especially if you can find one very close.
I can't believe they need to be TOLD to help her to eat at a subacute rehab!! I hate hearing about cookie-cutter rehabs where everyone just kind of does their jobs with blinders on and no one reallly cares or thinks about how the person is really doing, or what makes sense for them and their family. You can't expect to regain strength while badly is critical with my young patients too.

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