Mom's stubbornness is confounding to me...

I'm heading back up to the hospital shortly. I'm not really 100% sure what's going on anymore. One day it's one thing, the next another. I'm getting conflicting information and I need to get a grip on what's up here. Hopefully I'll have something good to report later today.

Dm, how does your mom get assigned a doctor in this hospital? Is this a hospitalist who is treating her? In any event, I'd call the Patient Advocate and ask for a medical review of her treatment.

I'm gnashing my teeth for you. This is ridiculous! You describe the flitting in and out of the room and then vanishing for hours routine that they do a bit too well - it's put my blood pressure right up.

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….

This doctor says Mom needs to be "under observation" for a while, yet she's well enough to discharge. This makes no sense at all to me. She's either well enough to discharge or she isn't, even if she goes to a rehab there's no guarantee that they'll be watching her closely enough to notice that there's a problem. Very confusing and not very comforting either. Tomorrow I've got to head off to the hospital first thing and speak to the SW, as I think a second opinion is in order here. If she's still ill enough where sending her home is potentially dangerous, is she really "better" at all?

Wow, another banner day today. I got to the hospital early to go over my options with the SW. It turns out that the Medicare "clock" doesn't reset, so home is the only option as Mom simply doesn't have $157 a day to fork over. But according to what her doctor told me on Friday she's "medically fine" so no worries, right?

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....

I'm just doing what I have to do, trying to look out for Mom's best interests as well as my own. I also must add that the doctor in question also works for the rehab she used previously so his interests might not always be focused on his patients, at least IMO. The SW seems to believe that keeping him as her primary matters somehow although honestly I do not, as any doctor can glance at her vital signs and say "she's OK". I might feel differently if he was especially proactive and easy to reach but he is not.

1. What a bunch of idiots you seem to be dealing with!!!!!!
2. Your ability to advocate for your mom's care deserves an A+++.
You tell'em, sir!

Thanks, I mean it's just ridiculous to do that to someone. That doctor had all day (not to mention the rest of the week) to speak to me and he waits until late Friday afternoon? In fact I might even demand a second opinion on Monday morning, as I really don't want to bring Mom home or ship her to rehab only to have her end up right back in the ER again a day or two later. I'm no doctor nor do I pretend to know better than they do, but I need to know he's not being hasty here. And I am most definitely going to let his employer know about his shoddy communication skills too. I mean he's telling me "she hasn't been critical for a few days" and it's news to me. He has no excuse at all for not picking up the phone and letting me know that, none.

Boy you could get a job as a patient advocate at this point. You've had an education in the school of hard knocks with your mom's care. Kudos to you (once again) in learning how to speak up and stand up for yourself and your mom. You're a role model!

So I visited Mom this afternoon and she seemed marginally better. Her vitals are fairly solid and she was slightly more "with it" although not by a lot. I stayed for around an hour, asked for the doctor and was told he was busy. I asked them to let him know I wanted to speak with him, then I left.

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...

Oh boy, you ARE going through it.

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 :)

Thanks for the update D. I'd be super cautious in your shoes also. You are so nice to keep us "in the loop".

Hey everyone, quite a busy week. To be totally honest, for most of the last six days I wasn't sure that Mom was going to make it. She doesn't look good at all and I couldn't help but feel that any visit might be the last one. The last few times I don't think she even really knew I there, she was fading in and out, mostly out, the whole time. On Wednesday she had some sort of nasal infection going on so masks,gowns and gloves were required in her room, which made it even sadder and more surreal. I tend to be an optimist but it's been pretty grim and I've been preparing for the worst.

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.

Hi all, thanks so much for the kind words and well-wishes! My mom is still in ICU and pretty out of it right now. her vitals have improved over the last few days but it's a struggle for sure. She finally slept for a significant period of time, her appetite is decent but she's tired and weak right now. I'm not sure what the future holds but right now I'm just taking it day by day, difficult as that is. I will certainly keep you posted, thank you again to everyone who took the time to post here!

Considering her agitation and considerable pain, I would discuss a daily medication with her doctors, like Cymbalta. It's for mood and pain. Activan didn't help my LO with anxiety either and Tylenol, only did so much. The Cymbalta really addressed bone and joint pain and lifts the mood. There are other options as well.

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.

dmanbro - I don't know if this helps, but when my mom was in rehab and then eventually a nursing facility, she would "act up" when I went to visit. Since I was the major caregiver for many years and her only living child, I think she felt comfortable acting up with me because she knew I would keep coming back. The love was there and she knew that just like when a child acts up for the parents, but not the sitter, etc. When others visited, it was like she was a different person (as much as she could be). I never gave up though, because I knew she really couldn't help it deep down. The dementia is an ugly disease, and it makes people change so much. Sometimes I didn't even believe this was the same mom I had growing up. Hang in there dmanbro and know that you're doing all you can. (P.S. - I stayed away very little because I wanted to spend as much time as I could with her since time was so limited and I got to know the staff really well - it made it easier for the days I couldn't go, but I would call and check in on her). Each person is different, and dementia/alzheimers and other ugly diseases can affect people differently and be in different stages. Take care of yourself, take five (if you can), re-charge your "batteries" because it will make things more tolerable. God bless.

dmanbro, I feel so bad for your mother. She is quite the lady. She is a fighter I can tell. I can't say enough good things about you for taking such good care of her. I can tell you have the same fighting spirit. I wish my healing thoughts could make things better for your mother. I know I won't be alone with having her in my prayers tonight.

Has the cause of the clot been determined, and has action been taken to stabilize her? Any estimate on her discharge date?

Hang in there; just focus on your mother and yourself; you both need each other especially at this time.

Sure hope things stabilize quickly.

Sunnygirl: Oxycodone, just a regular dose, nothing really major or anything. Until last night it was serving her pretty well, seemed to really calm her down in the evening. She also has Ativan but for whatever reason it doesn't really do much for her.

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.

What is she taking for pain?

Your poor mother - she's had a rough summer. Things were looking so good for a few days there, but think of this as a setback and another learning experience to put a good spin on a bad event.

I hope your mother, who is I think a lot stronger than we realize, comes through this well and is back home soon.

Dmanbro, so sorry to hear this upsetting news. Please let us know how you get on.

I'm so sorry to read this! One step forward and two steps back. My mom has had a lot of clots over the years - some in her lungs, which can be fatal if not caught early enough. She finally got a filter put in her leg years ago and has been good since. Fingers crossed your mom can get back home and settle down and start a recovery.

Hello all, hope everyone is well! Unfortunately Mom had a setback today, she's currently hospitalized with a clot in her lung. We'd made very good strides regarding her night cries, but last night around 1AM she just went into overdrive, moaning and crying about pain in her back. I eventually fell asleep but I woke up around 5-530 or so and she was still going to a very alarming degree. She finally passed out from exhaustion but she just wasn't looking or acting right and I decided I had to call the EMTs. She put up a fight and resisted, denying everything, but I insisted. They took her in and after a CAT scan she was admitted again. Poor woman cannot catch a break lately. I will keep you posted.

Just to note, ambulette services can be a blessing for non ambulatory patients.

Without detailing the grandkid's whole long and strange saga, I'd prefer it if they'd just say "we don't want to visit" instead of texting me a dumb excuse followed by "how is grandma today?". Right now I'm just ignoring them completely, they know where she lives. The worst part is hearing Mom asking me why they never visit, I just don't know what to tell her.

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.

Dman, how old are these granddaughters? I was thinking they were in their early 20's or so but if they don't drive they're presumably not even at the age of taking driving lessons. That puts a whole different spin on their behavior.

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?

Countrymouse: Thanks, I appreciate that. I'm not allowing any more group visits until Xmas, I think they're counterproductive and annoying. The three granddaughters pile in, at least one of them with her boyfriend in tow (none of them drive) and suddenly they're showering Mom with pity and getting all upset and emotional when she does or says something weird (which has been the norm for a while now BTW). And not only that, they seem to want me to preside over these visits so I can reassure them that she's OK and explain why she's doing this or saying that. It's the opposite of help, it actually ends up giving me more to do (and a cat hiding under a sofa all night to boot).

And I'm glad she's home :)

Yes it is time. How tiresome they're being, I'm tutting away for you - and I especially feel anxiety and frustration at the thought of their turning up mob-handed for an emotional homecoming party and then vanishing without trace - there just long enough to unsettle her when what she needed was to get home and get her breath back, and not long enough to do anything useful. Grrrrrrrr.

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.