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

Follow
Share

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 either...as 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 participate...so they say...in 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.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
35

Comments

Show:
1 2 3 4
Yes. I have found the social services network to be out-of-touch with reality more often than not. Sorry to say.
(2)
Report

AWESOME!!! You are a star!!! All I can say is OMG the BS involved in this damn healthcare system!!!
(1)
Report

You did very well and I am glad you succeeded in getting your loved one back home.
(0)
Report

SUCCESS!!! MIL is coming home...with NO 24/7 mandate! YAY!!!

The folks we met with were the director of social services, her PT (the only male), her OT, and the nurse in charge of her case. They were very warm and welcoming but I felt wary....figured at least one of them was bound to reveal him/herself as the proverbial wolf in sheep's clothing. The OT presented her findings first, saying MIL had been given several cognition tests and did not do well....scored a 17 out of a possible 33 on one and a 4 out of 8 on another. I didn't catch what the specific tests were because at that point she informed us these findings were a pretty strong indicator MIL needed 24/7 care. I thought, "ok, here it comes" but continued to smile and nod and let her have her say. Then it was the PT's turn. He'd already spoken briefly with my husband yesterday...said he'd originally been aiming to get MIL walking, at least with a walker, but he'd come to the conclusion that wasn't going to happen and so turned his attention to just strength building and doing transfers instead. (Wow, dawn finally breaks!!) He said MIL was a hard worker and was pleased with her progress, but still had some reservations about her transfers. I pulled out my "visual aides" and started going through them, explaining exactly how each transfer was done at home. Then the social worker asked me to outline her daily routine - how many times a day we checked in on her, what those visits entailed, how far away we live exactly. I went through a typical day, adding that she also has a PCA that comes three times a week (soon to be five), a Lifeline button, a Safelink cell phone, and that although we may not be physically with her 24/7, we ARE available to her every minute of every day at a moment's notice. At this point the atmosphere in the room began to change. The nurse asked about the dispensation of her meds - I explained how we handled that. They each took turns firing a few more questions at us and between dh and I we handled them all, I must say, with cool calm assurance....all a big show because I was a nervous wreck inside! Next thing we knew they were smiling and nodding and saying they were more than satisfied that we had "all our ducks in a row" and would be fine with letting MIL return home to her accustomed routine. The social worker actually told us she was "very impressed" and wished more people caring for their elderly parents were like us. (Boom!)

So she will be coming home on Saturday. The PT wanted a couple more days with her to work on building her strength and we were fine with that. (MIL was disappointed...she was hoping she'd be going home today...but two more days will give us time to do some grocery shopping for her, get fresh linens on her bed...and brace ourselves for the return to the every day grind. Yeah, I have mixed emotions over it....I want her home, but at the same time I'm apprehensive over how much she may have regressed and what we may be in for, at least for the first few weeks. I'm still going to hold SIL#1 in reserve!

Thank you ALL for your words of support and wisdom....thanks to what I've learned here I was able to go into that meeting feeling...well, empowered! Still nervous, but prepared to face them down if I had to. Hearing the social worker say she was impressed was the icing on my day...to be acknowledged for all our efforts was really gratifying.

Now I'm enjoying a quiet relaxing evening with a glass of wine (or two) while I still can. And I'm raising my glass in a toast to all the caregivers out there...to the continuing struggle...and the strength, support, and good humour to see us through. Slainte! (Irish Gaelic - "to your good health!")
(3)
Report

Sending hope and peace and strength to all of you. Clearly, you have your hands full. I hope all works out for every single one of you.
(1)
Report

Yaya and I both want to hear how you do on this!! We're pulling for you.
(0)
Report

Yaya - you have planned. You are prepared. You rule!
Go in there and be an advocate and don't let them determine what's what.
Kick some low level management azz!! then have a nice lunch with adult beverages!
(3)
Report

Going to our "family meeting" this morning. I am armed with a folder of written material (mainly for my own reference) on MIL's history, her routine at home, all the safety measures and support network we have in place etc. Also took pictures with my IPad of all the hand rails and other safety measures in place at her home, so I even have "visual aides".....still a nervous wreck!!! Our objective is to get her released ASAP; if need be we can call on SIL#1 to come stay with her for a week or two. She won't like it, but too bad. Also heard from the home care agency yesterday and found out she qualifies for more hours, so that's a bonus too. Aaarrrrgghhh...wish my stomach wasn't in such knots!! Wish us luck!
(2)
Report

Glad to hear everything is going better! It also sounds like the rehab is a good option for respite care and any other sub-acute things that your MIL might have as she ages. Extremely glad to hear that she is getting stronger! Maybe a good excuse to get additional "temporary" systems in place? Possibly a baby monitor for when she gets home (and it can just sort of stay in place if it feels safer). They are pretty darned cheap, & being able to just press a button and say "hey, are you OK" or to know that she isn't stranded on the floor for an hour or two is huge.
(1)
Report

Thanks for the update, and good luck! Keep updating us, please.
(0)
Report

1 2 3 4
This discussion has been closed for comment. Start a New Discussion.
Related
Questions