Mom's stubbornness is confounding to me...

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.

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.

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.

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.

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.

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!

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.

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

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 :)

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...

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!

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.

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!

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.

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....

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?

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….

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 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.

I'm not challenging, questioning or criticizing anyone's viewpoint here, but I do see a different picture, especially since so many of my family and friends were and/or still are in the nursing profession and share issues (not patient specific) with me to help me understand.

If you're familiar with CPM programming, think of 2 tracks here - one working toward discharge around a specific time, and the second insuring that the discharge can take place by doing UPDATED testing. Track 2 is the critical path activities - it might be running the blood work, getting x-rays, etc., based on the THEN EXISTING DATA suggesting a discharge is in order.

Results come back which dictate otherwise, but do not rise to the level of Medicare standards for keeping the patient in the hospital. Hence, recommendations for rehab.

And that can change as well after getting, e.g., a vascular specialist involved to address a potential clot issue.

I've been through this scenario a number of times. One was after a pacemaker replacement. Everything looked good, "all systems go", I was called to pick up Dad as he would be discharged, based on the data results at that time.

An hour later when I arrived, a chest x-ray had been done reflecting CHF. Change of plans: stay overnight for observation.

Would I have preferred to take him home that day? Of course. Would I have preferred more that he stay to ensure that the CHF was resolved, even if meant a change of plans and some quick reorganization? Absolutely, hands down, no question.

Here's another situation to indicate how quickly something can change. My sister had a port put in prior to her first round of chemo. Things went well, her surgeon told me she was in recovery and it would only a short while before she was ready to go home.

Time passed, surgeon later told me what had happened, as did my sister as well when she was stabilized. She had had an accident several years and suffered clavicle bone injury. We had both forgotten about it - it was decades earlier and off our mental radar.

The surgeon had some difficulty threading in the port because of the scar tissue but it was successfully inserted.

I don't recall the specific routes of port direction, but my sister told me when she began having difficulty breathing and the anesthetist yelled out for assistance that she knew she had a collapsed lung.

So instead of going home, her lung was "reinflated", she was weakened more than she was from just the port insertion alone, and she spent some time in the hospital recovering before she could even start chemo.

I was just sooooo thankful that it happened while we were still there at the hospital, as she was otherwise almost ready to be released from recovery. Had it occurred on the way home, we would have really been in a bind, calling for an ambulance on the freeway and rushing back to the hospital.


I would look at this whole situation as one of being in dynamic flux, responding to updated conditions, and not necessarily that the medical staff aren't all on the same page and/or aren't coordinating their efforts. Just be glad that they are addressing these "impromptu" diagnoses before your mother is released.

Well, Mom is staying another night, today they did a "minor" procedure to install a "screen" that will help prevent any future clots from traveling and doing more damage. She is apparently very sensitive to anti-coagulants and will have to be monitored going forward but she does seem to be responding well so far.

I prefer to err on the side of caution, so I insisted that she should stay another day and the cardiologist agreed. He also agreed that she definitely needs regular monitoring, however there's no reason it can't be done at home as opposed to a rehab. The issue I was having with her primary was that he claims that when he declared her fit for discharge, he "meant" to a rehab facility, which unfortunately Mom cannot afford right now. The thing is, the doctor in question works for a few rehabs. This troubles me, as I feel it's something of a conflict of interest. I've been to rehab more times than I can count and while some of them might offer constant observation, the ones in Mom's price range most definitely do not.

So after all this I spoke to the hospital SW who, much to my surprise, was totally candid and honest with me. She said that after speaking "off the record" with other doctors and nurses on staff, the general feeling was that this doctor suggested rehab for nearly everything and that there was nothing specific a rehab would offer that couldn't be offered at home. It was refreshing to get some actual candor for a change.

It's going to be a dicey situation regardless of where she is. However, like I've said, I've been to rehabs before and IMO if they can't manage to keep a cup of water within a patient's reach at all times, how can they be expected to continuously monitor a patient for a condition that has no visible symptoms? I've also seen the doctor in action at the rehab and it's normally a quick three minute assessment, again, something a doctor could do for her at home. So for now I really don't have a choice but to have visiting nurses do regular blood work and either have a doctor do home visits or use a transport service to bring her to appointments regularly.

As far as her health is concerned, she's doing pretty well considering how bad-off she was a week ago. I'm under no illusions here, but she's clearly more comfortable and honestly it's the most anyone can expect right now. So unless there are any complications (and there's always a chance of that) she will probably be coming back home tomorrow.

Glad to read that at least there are some clarifications and that your mother will likely be back at home tomorrow. Let's hope that she has a relaxing respite and chance to get back to a normal routine.

I think the Dr. Rehab might be like some of the doctors who pull out pads and prescribe medicine for so many situations. On the other hand, rehab is certainly helpful. Dr. Rehab may in fact be a member of one of the ACOs which "work with" Medicare to minimize return visits after hospitalizations. These ACOs are another story in an of themselves.

Just some suggestions on home monitoring of PT/INR for the level of anticoagulants, assuming your mother will be taking Warfarin/Coumadin....

1. In our situation, the prescribing cardiologist used to have blood drawn at his office, but eventually decided to refer it to a local hospital clinic.

2. There are about 4 hospitals in this area that have anti-coagulation clinics, with on-staff and rotating pharmacists. They use the "little prick" needles, get a reading on the spot, and adjust the dosage if necessary right then and there. It's a lot easier for the patient because the "little prick" needles aren't as invasive or painful.

And the monitoring device displays the levels in a minute or so. No lab needs to be involved.

3. Visiting nurses for my father have also suggested drawing his blood, indicating they could collect the blood sample and take it to the prescribing doctor (or anti-coagulation clinic) for testing to eliminate the need for Dad to go monthly (now 6 weeks since he's been stable). However, the pharmacists at the hospital advised they cannot and will not be involved in monitoring blood collected by someone else.

4. On a separate issue, you're probably aware that foods with Vitamin K offset the anti-coagulation effect of Warfarin. This is one list of foods and some medicines that contain K or are an offset:

nationaljewish/healthinfo/medications/cardiology/anticoagulant-and-drug-food-interactions/.

The U of Michigan had a better list but I can't find it on their website.

If she's going to get the newer medicine that doesn't require monitoring, do your research on it, and be careful. Our pharmacists advised that it's harder to manage and there can be stronger reactions b/c it's not being monitored. I researched the issue and we decided to stick with Warfarin.

5. One of the most interactive medications which actually led to hemorrhaging is Diflucan. The doctor who prescribed it failed to caution us that it would affect the PT/INR level and a week after taking it Dad was in the hospital due to heavy internal bleeding.

Some of the antibiotics don't affect Warfarin levels as much, but Diflucan does.

6. Our pharmacists advised, and we've seen the results, that it isn't necessary to completely avoid Vitamin K foods, just maintain a consistent level of consumption. And doing so seems to help regulate stability of the PT/INR values. But a big dish of coleslaw or other K foods once a week or irregularly is more likely to change the levels.


I do hope your mother does well at home and that your long journeys proceed on a safe and healthy path going forward.

GA: the Coumadin clinic suggestion is great, thanks for pointing this out to me as it sounds like exactly what she needs. There are a few in the general area and I'm going to start researching this first thing in the AM. the non-invasive blood testing would be terrific as Mom's veins are in pretty rough shape and blood draws are often a challenge with her. Again, the folks on this forum are as helpful as anyone I've dealt with since this all began, much appreciated!!!! Yes, her cardiologist did explain the Vitamin K issues with me as well.

It really was heartening to have a real, honest and candid discussion with a SW after all this time too. I've listened to canned advice and half-assed "suggestions" too many times already, so it was refreshing to hear one speak to me candidly and with Mom's interests in mind. Pamphlets and brochures are all well and good but getting a honest opinion really helps me in the here & now.

Just thought of something else. A Coumadin clinic might need a referral from a cardiologist or whoever is providing the script for the Warfarin.

They also handle prescription refills, calling it into the pharmacy as soon as I call them for a refill.

That last post doesn't make much sense. Let me start over!

The cardiologist or whoever feels she needs Warfarin would probably have to make a referral to a Coumadin clinic. This doctor would probably also be the original one to write a prescription for the Warfarin.

Once the clinic is involved, at least in our case, they then take over refilling the prescription and contact the pharmacy which you choose. They also send reports on each blood draw to the doctor who ordered the warfarin on the PT/INR values.

I remembered that we eventually switched to a clinic which was closer to us. Before doing so, I contacted the cardiologist and explained our desire to switch so that a script/referral could be written for the new clinic, which unfortunately was eventually closed and disbanded when the hospital was acquired by a for profit corporation.

Sounds like it's quite a relief to be cutting through the medical BS and getting to the truth. I've found that sometimes physicians feel they need to sugar coat things b/c they're uncertain how well patients and families will take bad news.

Hey everyone, things have been a little hectic but going pretty well thus far. They sent Mom home on Wednesday night, she didn't actually get in til around 10:30 that night which I was none too pleased about. It threw off the sleep cycle for a few days but that's working itself out. I have the visiting nurse thing in motion (again, as you have to start from the beginning after each hospitalization), found a visiting MD (hasn't come yet), weeding through the endless bills, sure you know how that goes. But Mom's quieter and definitely not in any non-manageable pain this time around.

I'm holding up well, discharge day and the next day were really stressful, with the countless calls and settling in and all. I actually got the oldest granddaughter to sit with Mom last night, as I had a social commitment I really didn't want to miss. It went pretty well, although Mom started carrying on after I left and managed to scare my niece a bit, which she has done before BTW. IMO if she'd spend more time with her she'd understand it better, but water under the bridge. I definitely have to find someone reliable to stay with her here and there, working on that now.

Dman, you're doing better than I did! By the end of Week 1 at home after rehab my hair was in rats' tails and I looked like Lady Macbeth on a bad day. Hugs and pats on the head to granddaughter, even if there was a touch of melodrama to it (and of course you're right that practice makes perfect); but again you're right to keep her as a nice-to-have extra family option rather than a practical, reliable solution. You're doing SO well! And I'm thrilled for her that your mother's made it home more or less in one piece. Hope things settle down nicely, thanks for the update, hugs.

Dman, check with your insurance company and mom's doctor to see if in home IN monitoring might be an option. My husband has a nifty little machine that was sent to us. He does a once a week finger prick, the drops of blood get sucked into a special little glass slide thing which is inserted into the machine. It gives a digital reading which he calls into an 800 number. They notify his doctor if it is out of range.

we have found that as long as we ear the same level of green vegetables week to wee, things are fine. Seaweed is the big no_no.

Babalou, I like that idea, especially in the wintertime. I'm never comfortable taking Dad out in frigid weather, even if the car is packed as if I'm running the Iditarod (no huskies though).

Was that kind of in-home monitoring scripted by your husband's cardiologist, or a lab? And I assume the doctor is the one who does the monitoring? Are there any anti-coagulation clinics involved along the line?


DMan, I forgot to mention that it's not unusual for fluctuation to occur for the first few months or more after traumatic events. After both my father's femur surgeries and rehab, it took about 2 - 3 months before he was back into therapeutic range.

So don't be surprised if your mother's levels aren't always close or in therapeutic range for a while.

And facilities may not be using the same manufacturer of Warfarin or Coumadin as you'll get from your pharmacist. We've observed that can also cause fluctuations in values, especially after rehab stays as I wasn't always able to gt the same brand of Warfarin or Coumadin as the facility used.

That teminds me; they kept my husband in the hospital for several extra days to get his inr stabilized.

My husband's internist wrote the script for the home testing equipment. The company is called Raytel cardiac. He was going to a regular lab at first for testing ( brand name will not be mentioned here) and they got a false reading of 15; th he doctor called us at 5am and said "um, get him to an er right away, but it must be wrong or he'd be dead
We have neen very happy with the home testing.