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?
I'm glad Melatonin is working for your mother; my understanding is that it's relatively safe, so said my sister who was a nurse. I used to take it occasionally and found there were no aftereffects, which was really nice.
I'd be interested in hearing more about your efforts with the county; I hadn't even thought of contacting ours for respite help, although I can't say that I really need it since I'm not a live-in caregiver. But I wouldn't mind help with some of the chores; the driving all around gets to me.
Whatever happened to that massive bill the rehab center dropped on you like a ton of bricks? Were you able to work out something more reasonable, and on a more reasonable time scale?
It gets stressful sometimes (especially during the winter months), right now she doesn't have the funds to pay for any kind of help so it's almost all on me. The grandaughters are still pretty much useless, in fact they haven't been by since Christmas Day. The bills keep coming too, right now I'm (still) going at it re: her last rehab bill which IMO was an outrage esp. considering the lousy care they provided.
Her doctor recommended melatonin to help her sleep and so far it seems to be helping. That's probably one of my biggest concerns, as when she doesn't sleep she gets positively goofy, asking strange questions and generally being confused all day.
Right now I'm navigating with the county re: respite care for a few days or so, as I really could use a break from the routine. It's a grind but I'm holding up pretty well thus far, but man, would a nice long weekend be a blessing right now.
Medicare is at times notoriously slow at paying, so my SIL, who handles my mom's money generally calls and says " we're waiting for Medicare to catch up". That goes for the hospital and ambulance .
The rehab is trickier. Didn't the rehab fail to realize she had a fractured spine, causing her NOT able to do PT? I would be inclined to play hardball with them. File a complaint with the ombudsman and the joint commission.
I'm not even sure what some of those bills are for to be honest. I'm haggling with them right now as I thought she was covered. Again, payments are fine but they have to be realistic, she's on a fixed income and you can't get blood from a stone, as they say. There's a priority list and whatever's left after the necessities is where the bargaining begins.
I think I might try writing the rehab business office that mom's lawyer will be contacting them about the poor quality of care she received.
Please remember that it's mom's money that pays these bills, not yours.
Have you talked to an eldercare attorney yet? Good to hear from you!
The rehab bill is especially galling, as her last stay there was a joke. Because she was "loudly complaining" all night, their solution was to toss her in a room with an even louder patient, as opposed to maybe finding out WHY she was complaining all night. Turned out it was a blood clot in her lung. And not only that but when they discharged her they never told me that she complained ALL NIGHT, literally for ten hours straight at a stretch.
I'm holding up too LOL, it's challenging at times but honestly she's not really all that difficult. For me the most stressful aspect of it all is the endless phone calls, bills, paperwork, applications and etc. Today's big drama was that the visiting nurse's group is discharging her already, so now the task is to line up another service to work with the visiting physician re: blood work and etc. The home health aide has been coming three times a week for an hour and she's been a help (and Mom likes her too) but it's not an insurmountable loss, as it is only for an hour. Other than the HHA the service was as disappointing as the last one IMO. The PT was a poor match for Mom but then again she doesn't really cooperate much. He did offer a few decent tips but otherwise not much else. Otherwise they really didn't do a lot, the nurses were in and out and the social worker mostly just left pamphlets, which I kind of expected anyway.
So right now my goal is to bring someone in a few times a week, which should be financially feasible in a month or so. As nice as the current HHA is, she's only here for one hour three times a week first thing in the morning, which honestly isn't much. Mom can be trusted home alone long enough for me to zip to the bank, the grocery store and etc. but I need someone who can stay for a few hours and keep her busy while I get a break. And it'll be even more important once the weather turns ugly and cabin fever sets in LOL. The oldest granddaughter has been more helpful as of late, although she's really only good for "supervision" and not anything heavy like bathing or changing. So that's where we stand right now, holding up well and trying to keep it that way.
Glad to hear things are going better for you and your mom. I haven't been here for awhile either (been on vacation - much needed), but glad to be back. Hope the search for companions/aides goes well, and you find someone well-suited for your mom. Take care.
Glad to hear that things are otherwise going well though, especially with the home aide. You and your mother both deserve a break.
Right now I'm looking into and screening a few home companions/aides who can come by and keep an eye on her while I'm out. After a while I tend to get kind of squirrely being in the house too much LOL. Still though, it beats the heck out of hanging around the hospital or the rehab home.
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.
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.
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.
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.
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.
They also handle prescription refills, calling it into the pharmacy as soon as I call them for a refill.
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.
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:
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.
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.
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.