Learning some harsh frustrating truths during this journey.

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If any of the alleged health care professionals my mother has dealt with had actually listened to me instead of ignoring me and treating me like a delusional doting son I believe she'd be on the mend already. If they hospital staff had listened to me during her first stay, the second might not have been necessary. If they'd kept her there for a few more days during the second one and given her time to recover a bit before shipping her off someplace else, she would have coped with it better. If the rehab center staff had listened to my very reasonable suggestions instead of worrying about their routine, she wouldn't have suffered a panic attack and wouldn't have wasted a day under sedation.

I thought that a few weeks in rehab would be great for her AND for me but apparently I have to be there most of the day in order to prevent them from trying to push her too hard too fast. I have to be there to ensure that the meal delivery person puts the tray within her grasp. I have to make sure she gets her proper BP meds BEFORE she undergoes the stress of exercise. I have to make sure the therapist of the day (always a different one) gears the plan towards HER needs and not the therapists schedule.

I made sure I was there today for her session and lo and behold, no need for sedatives. She sat up and stayed up under her own power for longer than she has in weeks. She worked muscles she hasn't worked in weeks. Afterward she looked better, moved better, felt better, moved her bowels better, made more sense and demonstrated improved memory. All of which I predicted.

It's kind of maddening. I thought that maybe I'd get the chance to catch up a little and be temporarily freed from having to do all the work but now it's actually going to be harder. But whatever, I'm on top of this and I'm going to make those people work for their money, they're not going to load her up on xanax and let her rot in a corner on my watch. From now on I'm the boss where she's concerned, not disinterested therapists, bossy nurses or quack doctors. Sorry, but had to vent. There are some kind helpful souls there but I'm not letting their stupid corporate mentality screw her over, no way no how.


Those of us who grew up watching Marcus Welby et al expect that once our loved one is in the hospital, rehab, assisted living or wherever we can step back and let staff take care of everything. I'm not sure if that was really true back then, but it is for sure not true now. In some countries it is expected that family will provide much of the nursing care when someone is admitted to a facility. With soaring health care costs that model is becoming a reality in North America as well. Even with the best of care someone needs to be on hand to advocate for their loved ones, most people will have a hard time negotiating the system alone while in the midst of a health care crisis or suffering from dementia. Just be glad you could be there, what about the poor folks that have no one?
I am a retired RN and I am in the hospital as a patient often. I am fine by myself. But I would never let my husband with dementia be left alone in the hospital. And for any of the rest of my family I would try to be nearby. It is true that every person who goes in the room is not up on everything about the patient. But you sound so angry. You sound like the dr, the nurses, the physical therapist and everyone else who goes in the room is ignorant and doesn't know as much as you do. And most are truly trying to help. That is why most chose this profession. . When my 82 year old father was in the hospital we encountered some sour apples but for the most part everyone was great to him and some cried when he died. Your mom probably feels much more reassured when you are there and you should be when it is possible. But the more upset she sees you, the more she will be less likely to cocperate with the very people trying to help her. And yes you can bet patients get sent home before they are ready but that is not the dr, nurses or hospital that does that. Thar is the insurance company or medicare with their DRG;s. Diagnoses Related Guidelines. I don't want this to sound harst like I am criticizing you because believe me I have been in your shoes with both my mohter and my father.
But if you try to be more of a silent observer and only speak up when absolutely necessary you will see that most of he people there to help your mom are competent.
Much really depends on the hospital. Some hospitals are well staffed and have highly qualified people. Some hospitals are not so good. We have one hospital near here that pretty much lets the people lie in bed all day, coming in just to do the mandatory things. There are too few nurses and those who work there are often not considered the best. The better ones are hired by the better hospitals. Knowing what I do about the hospitals in the area, if my mother became ill, I would have her taken to one of the three that have excellent reputations and shun the one that has poor patient care. It would take a lot of the load off my shoulders in advocating for her.
I agree 100% with what SondraO said above.... you don't want to create an environment where your Mom becomes scared when you leave be it the hospital or rehab center because you are so upset with everything.

My Dad was in a rehab center for a couple of weeks for physical therapy after having a heart attack, no problems because I let the center do what they needed to do. I am not a physical therapist, nor a cardiologist, nor a nurse or pharmacist, thus I let the pros do their job. If there was something that didn't seem quite right I would have asked.

Don't forget, you are one person with one patient [mother].... the rehab centers have dealt with thousands of patients, thus they are familiar with what works and what doesn't.

Just curious, I thought blood pressure medicine is time released? The BP meds I take are solid form, but are time released.
Well, I was definitely venting and when I'm there I'm nothing but respectful and polite to everyone, even the ones I don't especially care for too much. I just wish that, for example, when I ask them to leave the food tray within her easy reach they'd note it and DO it. I'd like an APPROXIMATE time frame for when she'll be getting therapy so I can plan accordingly. I will say that it's slowly improving a little, but sometimes you get the one who gives you the "I dunno" answers or the one who shrugs away your concerns and it's frustrating.
I blame a lot of the problems in our health care delivery to lack of uniform standards. Schools training people to become health care professionals lack uniform standards. Programs training health care professionals after they graduate lack uniform standards. And hospitals, clinics, and medical offices lack uniform standards. Health care is comprised of so many different elements that it can hardly be called a system. The result is that hospitals, clinics, and medical offices differ widely in their quality. It is ridiculous that this is the state of one of the biggest "industries" our country has. It's disgusting that hospitals, clinics, and medical offices have been allowed to run wild and do pretty much whatever they want for this long and still get paid. There is no patient lobby on Capitol Hill and there needs to be.
The hospital definitely angered me, as they discharged her and sent to to the rehab on a Friday at 4pm which meant she caught the cusp of a shift change for the weekend, which meant it was all unfamiliar faces for two days. Today was better, her therapists do great work with her and listened to my concerns. She was beat afterward and dropped off to sleep, then one of the assistants tells me she's going to put her in the chair and take her to be weighed. Her heart was racing during therapy and honestly there was no possible way that 120 lb woman was going to get her in a wheelchair right then not to mention that it'd be bad for her to get all panicky again right away. The lack of communication between departments and people is annoying.

One thing that really does bother me is how at first no one was taking the panic attacks seriously. I warned them all and I wished they'd listened but I guess they had to see for themselves. Thanks to all for your helpful and kind comments.
There are a lot of issues raised in your posts, some of which are legitimate and others which reflect what it seems to me is a contempt of health care professionals. I note also that in your first paragraph you've used the phrase that "if they'd listened to me..."

It's not my intent to be critical, but you appear to have so much contempt for the health care profession. And frankly there's a sense of arrogance as well. I'm emphasizing that this isn't intended to be critical, but to offer response to the advice you seek by posting.

As to discharge from the first hospital stay, as well as keeping her longer during the second stay, these are Medicare issues, which mandate that hospitals discharge when patients reach a certain level of stability. The goal is that their recovery continues elsewhere if the hospital staff can't certify the patient needs more in-hospital treatment. I just went through this and it was frustrating for me as well.

Then you refer to your "very reasonable suggestions"....Are you a health care professional? Are you a therapist? Do you know how tough their jobs are? Yes, it's their responsibility to provide care, but they have both Medicare and hospital guidelines to follow. It would be more helpful if you could acquaint yourself with these so that you understand their perspectives.

Therapists in rehab facilities may see patients in the morning or afternoon. I don't know how their schedules are determined, but flexibility is required, of both therapist and patient. It's not like outpatient therapy with set schedules.

"I have to make sure she gets her proper BP meds BEFORE she undergoes the stress of exercise." Were you told by a doctor that this is the proper order? If so, talk to the Director of Nursing (DON) - she can handle the issue with her staff.

"I have to make sure the therapist of the day (always a different one) gears the plan towards HER needs and not the therapists schedule." Guess what? That's the way it's going to work. Therapists have numerous patients; they have to juggle schedules and workout to fit everyone in. Better to get used to it and work with it. Is it really the worst thing that could happen?

It's a delicate balance of give and take. If you don't accept and work within that framework, your frustration will only increase.

If the food trays aren't placed close, talk to someone who supervises the kitchen staff. They will have orders as to dietary restrictions; perhaps they can note that placement of the trays is too far away.

Complaining to the staff will only put them on the spot; they're employees, doing difficult work. Try to find ways to complement them and ask how certain things can be done and you'll get better response.

I would try to start off on a different foot and bring in a tray of bagels or donuts for the staff just to show them you're not as critical as the impression you probably created. And ask yourself how you'd handle those kinds of jobs - could you? Could you and would you put up with what nursing home staffs deal with regularly?

When I've had problems, I document them privately and then discuss them with the Administrator or DON, approaching it that there's a concern or issue and I wonder if she/he could assist, or help with handling the issue, or give me advice on what I can do to help.

Take a different approach; you may see quite a change.
GardenArtist: very valid and reasonable response. Let me say first that I'm nothing but respectful and polite to every staff member I deal with. I realize they know more about medicine and care than I do, arguing otherwise would be silly.

However, that said, I raised some valid concerns during her first hospital visit and I believe that if they'd have been taken seriously at the time the second visit might not have been necessary. While I had no idea what the problem was, it was clear to me that there was one and the second visit confirmed this suspicion. I also believe that her trip to rehab could have been timed better, as she arrived on a Friday afternoon just as the weekday staff was leaving for the weekend, which undeniably led to some confusion and miscommunication.

I was venting and perhaps this was hasty of me. I suppose I was venting more about the "system" in general than about any one specific person or facet. I am an active participant in her care and as it's begun to progress I feel I'm seeing the level of care improve. Today we had some productive therapy and talks with the doctors, nurses and staff and I'm seeing some positive things. I appreciate the thought you and everyone else put into their replies, it's great to have a forum to discuss these things and yes, even to vent frustrations and etc.
dmanbro, regarding your mother's placement at rehab... please note that depending on how many hospitals are in your area and how many in-house rehabs there are, maybe that was the only open bed available so the discharge nurse grabbed it.

I learned all about that when my Dad needed to be placed in rehab... we wanted him at a facility near the house but no bed was available, so the nurse told me what places had beds and yikes some of them were over an hour away, so we said *yes* to one that was a half hour away.

Plus insurance companies want patients out of the hospital as quickly as possible, this cuts down on germs being passed around. Even serious surgeries are now out-patient... you go home the day of surgery or within 23 hours.

Keep the conversation going (or start a new one)

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