Stressed out. Feel like we're being railroaded into providing 24/7 care.
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.
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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!")
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!
MIL remains in the sub acute facility, still receiving daily PT in the mornings(which is the best time for her because it's when she's physically and mentally strongest). Afternoons are free time, which she spends reading, watching TV, working on her word search puzzles, and napping. Her first week there she actually seemed quite happy, I think because she was hoping "they" might actually get her walking again (not a possibility at this point as her disease has progressed too far for that, but we let her keep hoping). This past week she's begun to grumble a bit, mostly about the food and how "some of those girls" (nurses/CNA's) can be a bit brusque when helping her dress/undress...which I think just comes from their need to be efficient. MIL says, "they just take hold of my shirt and pull it right over my head, shwingo!" (one of her favorite words for "fast") I explained to her that they have a lot of patients to care for and if they try to move slowly and patiently with every one of them then some patients - possibly even her - could end up being forced to wait a long time for help. I asked if she's ever been pinched or scratched while they're helping her dress and she said no. I had to help change her shirt while I was there visiting the other day and saw no marks of any kind on her, so I think for the most part she's just annoyed that they tend to rush her through the process. At home I was always very careful, deliberate, and considerate of her modesty, and I think she expects the same patient treatment from them. Don't fault her for that, but I don't fault the staff either. So far the nurses and CNA's I've met have been warm and cheerful, and MIL's complaints about them have been minimal, she's always dressed and clean, I've never once caught even a hint of urine odor, so I think the care she's receiving is about as good as can be expected. Could it be a little better? sure...but could be a lot worse too. She likes the PT staff. Her progress there is slow but she is making some headway...she does seem to be gaining back some strength so that's good.
IMO they're about ready to discharge her. There's another eval. meeting scheduled for Wednesday....we'll see. As it turns out (after my initial panic) her stay at this facility actually came at a good time....a few days after she was admitted there my husband went to see his cardiologist and was told he could have an ICD (pacemaker). We talked it over, decided it was pretty much a no-brainer, and told the doc ok. Next thing we knew they were scheduling the procedure and sending him for pre-op! (Surgeon going on vacation next week, of course) Not having MIL to worry about these last two weeks has allowed us both to concentrate fully on his needs....and given us a much needed respite as well. Happy to say the ICD was implanted this past Friday and he's recovering well! Now we can get back to work on breaking MIL out of that joint she's in and getting her back home where she belongs.
Do cut the folks a bit of slack --they are very, very used to dealing with families that are in denial about their loved ones' real condition, so you can kind of see where they are coming from. The fact that you are MUCH more realistic and have a unique situation as far as living around the corner is something they may not realize (so they have to cover their b*tts with the "standard" recommendations). As far as the rehab goes, as long as they are willing to send her home before the "goal" of walking is met, working on strengthening her isn't bad. If she gets up and walking in a controlled situation it might help her body be stronger for transfers.
I am very careful about what organizations I deal with. I do not trust social workers either. My mom gets great care with us and gets to live the life she has always wanted, but I am careful about what medical professionals I see and the advice I take.
Sometimes I think they are trying to make old people go to a nursing home or other similar places to take away their independence. I am a 24/7 caregiver, but I do my best to give my mom her independence for as long as I can.
I would see how long they intend on keeping her in there and see if you can check her out early. Perhaps there are some home exercises she can do. But it sounds like a place you need to get her out of.
I'm sure there are horror stories about HHC agencies that are true and scary but for the most part, a little checking into and asking around should find you one that can help you ease your MIL back into her previous level of at-home functioning or very close to.
Realize that seniors do decline in these facilities. "Institutional Demential," there's a name for it. And you have to be there and be on them if you want your elder taken care of. The more "critical care" the facility is, the more you have to be there to watch them.
Find a good lawyer who deals in senior affairs. Make sure you have the paperwork you need, funds in place, and get advice before agreeing to anything or signing anything.
The social workers at the facilities are NOT your friends. Beware, and don't take anything they tell you as truth, check it out for yourself.
Nobody will take as good care of you MIL as your family will. If you think that having her in a 24/7 facility will prevent her from lying on the floor for 5 hours after a fall, think again : (
Then why did they waste that time trying to get him to do it??? And instead of working on the walking part, which was the main reason why he was there, if he resisted getting up, one P/T person would say, "well, he's not in the mood today, we'll try again tomorrow
Unfortunatly because he never gained full mobility, I had to place him in a facility. But, I wonder about some of these P/T people and the "goals" they set.
jeannegibbs, I greatly appreciate your input - you always have a way of lending such keen insight and calm reason. We will wait things out for a while, let them work with her and meanwhile keep careful watch over her progress. We should be able to make arrangements for overnight stays at least for the first 2-3 weeks after she gets home. I do believe she'll benefit immensely from getting back home as soon as possible but I agree with your advice to stay close for a while. She does have dementia and we realize "that day" is going to come eventually, but we don't think it's here just yet. When it does come we don't intend to be martyrs. MIL herself has told us many times she doesn't want to "be a burden" and we always tell her we appreciate her concern, she is not a burden now, but should a day come when her needs surpass what we can adequately give her we will do everything we can to get her the best care available. And we will never EVER abandon her!
Mishka - you did make me smile!...and laugh! Your sister's a hot s***!!! And your mom too! I can see where you get your sense of humor from...and it's a good thing because you have a LOT on your plate. Without humor and the ability to put a positive spin on things now and then it's only a small step over a very thin line to a rubber room and a straight jacket!! Kudos to you...and (((hugs))). Give one of those to your daughter...when she's feeling receptive!
My next door neighbor is CEO of a large visiting nurses business. It is "not for profit" but if you knew what he, his family and friends take from that business, you would want to string him up. Forget about the "Board", they are well appointed to make sure no one snoopes into how things are run. How do I know these things, he cheated on his 3rd wife and she spilled the beans.
In hospitals, they are constantly under the guns to make profits. Medicare is paying less and making it harder to recover expenses. Alot of the money goes to, once again, CEO's and administration.
You have to be your parent's advocate.
One time these creepy repair men came -they just gave off a bad vibe and I was alone with my infant girl ( husband was at work) so I said really loud to my HUGE golden retriever ( he was huge-he weighed 140lbs at his biggest. The vet was amazed by him) within ear shot of these guys--- "Sandy-no biting this time!!!! You stay back. NO ATTACK. NO!" He was such a love bug. He would not have hurt a flea. But they kept their distance. I pretended to hold him back when they came up to talk -actually I did have to hold him back --from him wanting hugs!
My sister is worse. Someone cut her off in line and she turned to her toddler son and said -"see , honey, she must be a very important person because she can just get in line where ever she wants"
And---she took Mom shopping in her wheel chair and Mom stood up to sign the receipt -she has very limited ability to stand but can --and my sister yelled "It's a miracle!! It's a miracle!!!" Mom laughed her butt off. She said no one eles did.
And , one time at my grandpa's funeral this one yucky older uncle-second cousin or something of mine -during the family viewing before the final closing of his coffin-came in with his grandson and said-" see,Jimmy, this here is a dead body" as he pointed to my grandpa so I turned to the boy and said -"Yes, Jimmy and this here is an asshole"and I turned and pointed to my uncle /second counsin/whoever. No---I didn't actually say that to him. I was too stunned to at the time but later the comeback came to me and to this day I wish I would have!!!!!! I hate when good comebacks come too late.
I am babbling. Too much sleep. I actually slept. And I want to make you smile.
Oh, and jeannegibbs,once again, I find your post awesome.
Hope everyone's day is better than yesterday's even if yesterday was good.
Horserider, I've actually been toying with the nanny cam idea for a while now... it just feels so intrusive. Wish there was a way to keep an eye on her without feeling like I'm invading her privacy. (Although I have to admit there've been times when I REALLY would have liked to rewind a video just to see "how the heck she did that"! ;)) And I agree totally about falls can happen anywhere. The one that landed us in this situation could have EASILY happened with me right there in the house with her. Even sharing the same living space can't prevent them all...unless one chooses to never sleep, shower, or use the loo!!!
(After my husband was hospitalized for pneumonia I figure it took another 2 weeks at home to fully recover from the disease and 2 months to recover from the hospital experience.)
I suggest that you tell the staff that you intend to take her back to her house when she is released, with increased monitoring. Their therapy goal should be to get her back to where she was before she fell. And then do monitor even more closely for a while, maybe even one of you sleeping there for a few weeks until you get a better sense of how she is doing.
When my mother (late 80s at the time) was in TCU after she injured her arm, we were told in a family meeting that she needed to go to a nursing home. And, whaddya know, they happened to have an opening in there NH wing. My sisters and I said thanks but no thanks. One sister took Mom into her home and arranged to work from home for two weeks. By then Mom has able to return to her apartment, where she got along fine for an additional four years.
MIL will probably not be able to stay at home indefinitely, especially if she has some form of dementia. The decline may be slow or rapid. Start giving some thought to additional help she could have in her home, to prolong her stay there, and then what you will do when that is not enough. But don't be bullied into it by care center staff!
Haha
I am kidding. Actually I am sorry you have to deal with this. I think you are a super DIL!
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.