So she's in her second week of rehab. Every time I visit she just wants to "lie down". Plus she has a completely unbelievable fear of falling, I mean she's comfortably in bed and gripping the railings like she's on a boat being tossed at sea. She says there's no vertigo or dizziness there either. Today I merely tried to raise the bed a little so she could eat properly and see me and she starts carrying on like it's the worst torture imaginable.
So I was talking to the therapist and she tells me that on Friday they had to change the mattress so there was no other option but to get her in the wheelchair for a while. This has been a goal since day one. She tells me that after a brief struggle she did get in the chair and remained there for a few hours with no issues. I was astonished as Mom never mentioned it.
So today I'm there and we figure let's go for it again. They sit her up and immediately the death grip begins. This little old lady who's always too weak to move was fighting off three people and resisting with everything she had. There was no risk whatsoever of falling. Eventually the therapist had to give up and i could see the annoyance there, as I felt it too.
I'm wondering if maybe it's me. When I'm there she never stops with the hapless routine and the fear of falling, then I hear that while I wasn't she's actually doing something. Perhaps i should skip a few days and see if it helps?
Any chance of getting the SW, the attending physician and the nursing service rep all together in the same room with your mother? Why do these people not communicate???!!! Aaaarrrrgggggghhhh….
Wrong. I sat there all day waiting and waiting for the doctor to arrive so we could expedite the discharge process. The SW was very helpful. Then she set me up with a different visiting nurse group and the rep visited with me. Then she disappeared, came back and told me there might be an issue with the blood thinner meds Mom is on. Then she vanished again. Meanwhile the doctor was nowhere to be found. Plus Mom has a PICC line in her arm that's supposed to be removed before her discharge as well. Finally, at six PM, I told the nurse on duty that today is a wash, can't wait any longer and they're not sending her home at eleven o'clock at night so tomorrow it is.
Then I get home and of course the doctor calls. He tells me that Mom needs to be under observation right now, like at a rehab. I told him that financially this is just not possible and anyway I was at the rehab he works with every day and I seriously doubt they're going to 'closely monitor' much of anything. Then I asked him to re-define "medically fine" for me. Then he informs me that there's a procedure the hematologist has recommended that will alleviate the risk of another clot and that he'd like to do this tomorrow. So why was I waiting to bring her home all day?
Then I check the mail. During her second hospital stay in July they screwed up her insurance info so i was greeted with a gigantic ER bill. Then I opened an ambulance bill, a fee that the rehab SW told me was "covered" at the time. Unreal. Looks like I resolved the huge ER bill but not the ambulance charge so far. Gonna be a long week folks....
2. Your ability to advocate for your mom's care deserves an A+++.
You tell'em, sir!
While driving home he calls me. He informs me that Mom hasn't been "critical" for several days, she's only still in ICU because they don't have a regular bed, she's "medically fine" and he wants to discharge her...now. I told him "huh?" as it was already 4 in the afternoon on a Friday no less. He asks me if I'm sending her to rehab or taking her home and I said "neither today, no way no how". Then I asked him why he waited until 4PM on a Friday to relay this information to me and why he expected me to make these decisions while driving in rush hour traffic. Then I told him I'd talk to him again AFTER I spoke with the hospital SW, not before and certainly not now. I don't think he appreciated it but hey, too bad, there are these things called "phones" that one can use to communicate and exchange information and too bad for him if he just didn't get around to reaching out to me until the week was over. Mom's first rehab stay began at 5:30 on a Friday afternoon and it was a disaster, mainly due to the lack of communication between the weekday shift and the weekend one. If she goes to rehab again it will be during the day on a weekday, no if ands or buts.
So she called after I got home. I told her that first of all, I needed to know whether the Medicare clock would reset re: rehab. Then I explained that her previous rehab facility was a no-go and I'd require a list of other places and that I'd need at least the weekend to look that list over. Then I told her that if I need to bring Mom home again I needed everything in place first: a list of medical "dos and dont's", a list of all necessary medications AND the corresponding scripts which I'd have to fill BEFORE she arrives home, transportation (which I am not paying for) and all "home services" set in motion before she leaves the building. Non-negotiable.
If I can get her into rehab again my expectations are low, I'll do it mainly to ensure that she's relatively stable and not require another ER visit after a day or two at home. So Monday morning I'll be meeting with the SW to hash this all out again. While being a hard-ass isn't really my style, I can't allow anyone in this process to bully me around and force me into making snap decisions anymore. I told the SW that I simply wasn't going to allow them to just boot her out on a weekend and to her credit she was reasonable about it. So we'll see...
There just is no knowing. Do what you're doing, taking reasonable care of yourself - well done, sensible man - and let it be. Guarded is right: I hope it's good news, but it could also be compassionate care: ICU is a h*ll-hole where you don't want to be unless there's a treatment objective. Either way, I'm very glad your mother is getting out of there.
And you were right to defer discharge decisions. One thing at a time, eh. I know SWs have their difficult work to do, but they can sometimes think their priorities come first for everyone and overlook what's going on in the here and now.
Hee! The incredible, indomitable toughness of some sweet little old ladies is astonishing. May your mother be one of them :)
On Wednesday morning a SW from the hospital called and went into the spiel about shower chairs and transfer boards and hoyer lifts and discharge planning and I just wasn't in the mood, as when I saw that hospital number on the phone my stomach dropped. I basically politely blew her off and told her to leave me be for a while as I wasn't going to make any decisions right then and there anyway.
Then today (Thursday) I came down with a splitting headache early in the day so I pretty much crashed and tried to sleep it away, which I eventually did. Not feeling well enough to drive yet, I called the nurses station to get an update and the nurse tells me they're putting Mom in a regular room as soon as they have one and they're planning on doing some PT with her to get her moving again. And this information kind of shocked me, as just yesterday she looked as sick as I've ever seen her and I was legitimately concerned that she wouldn't make it through the night.
So now I have no idea what to think. Obviously I'll be visiting tomorrow to find out what the deal is here but apparently they must feel she's on the mend, somehow. Which is great, of course, but even though I'm usually an optimist this has kind of caught me off-guard a little. And shell-shocked me a lot, too. I mean it appears to be good news, but I'm guarded about it.
If she's been up all night, I would be concerned as to whether her pain is being handled or that her anxiety is being controlled.
Hang in there; just focus on your mother and yourself; you both need each other especially at this time.
Sure hope things stabilize quickly.
Thanks all, she's not too pleased to be back in the hospital but she's as comfortable as can be expected. She was up all night so she was exhausted and not too coherent today. I had no idea about her lungs, although I knew something had to be up based on how agitated she was last night. I insisted that she be taken to the same hospital where they did her back surgery as I feel the level of care there is better than the one she went to for her first two visits, I was absolutely dreading them sending her home again without really doing anything. This time around, though, they were on the case.
I'm holding up OK, it's just so sad seeing Mom go through all of this in such a short span of time. Hopefully she'll be able to get through this setback and manage to find a "comfort zone" again.
I hope your mother, who is I think a lot stronger than we realize, comes through this well and is back home soon.
Right now I'm waiting on another visiting nurse again and honestly it's already frustrating. This one is doing an "eval" regarding physical therapy needs and equipment and etc. and based on her phone call I already know it'll be next to useless. I don't know how many times I've had to explain that my mother cannot use her legs right now, yet all these PT people seem to be interested in is "sliding boards" and ramps. I just really want to get to the part where someone actually attends to actual medical needs.
And I had no idea how difficult it'd be to find a in-home physician. She'll need her scripts refilled by the beginning of October and right now there's no way I can get her to her primary doctor without an ambulance transport. I think I've found one, however there's some issue with her insurance now. If we have to just pay out of pocket we will, as in the long run it'll probably break even anyway.
I'm thinking you might have to help guide them to learn how to behave under the circumstances. I don't know offhand of specific articles here or on other sites that help people understand how to interact with someone your mother's age and who is also recovering from a complex medical event. Maybe someone else here has suggestions. But I suspect that they're kind of flighty young pre-teens with boys on the mind and little experience in dealing with situations that require maturity.
One thing comes to mind is to let each of them know what your mother's particular interests are....cooking, reading, etc. and they can decide which one they want to focus on, study a bit and then plan to have an adult conversation. That's a way to turning the situation into something more positive, but it depends on whether the girls can and will make the effort to channel their interests.
You could also give them homework assignments on the topics that interest your mother. That will give them a chance to learn how to study in a nonacademic environment. And when they are conversant, they'll be better company for your mother.
I'm also wondering where are the parents of the granddaughters? Can't they provide some guidance on behavior with an older adult recovering from illness?
Give them a schedule and say turn up at this time for this purpose or stay away. They have GOT to understand that right now you've got enough on your plate without being appointed communications officer for the entire family. Be ruthless, villain be dam*ed.