Learning some harsh frustrating truths during this journey.

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.

The one person in all of this I won't forgive is the social worker I spoke to during her first hospital stay. The second one couldn't have been nicer or more helpful, but the first one was awful. My mother, who less than two WEEKS earlier had been happy, active and peppy was obviously not feeling well and needed to be evaluated thoroughly. After meeting mom for five minutes this vulture was already suggesting a FT nursing home and urging me to sign over everything to put her in one, which is something my mother made me swear I'd never do. While I was attempting to explain her situation she was just looking at me with this disgusted sort of pity as if I was just a delusional child who couldn't see "the truth". In hindsight I think she started me off on the wrong foot and put me in a bad frame of mind. Bear in mind that this was Mom's first hospital stay in forty years so I had NO idea what to do or what the options were. It really sucks when you're trying to focus on health-related matters and someone in the system is all about money and assets and costs.

Again, thanks for all the great input, it truly does make a difference. I tend to be reactionary when I'm stressed so I appreciate being talked off the ledge, so to speak!!!!

Dmanbro, I've met a few like the brusque social worker. Was she also the discharge planner? They seem to be a different breed. One last week was pushing me to make a decision on home care and choose one of the recommended agencies.

Although I repeatedly told her I wasn't going to choose any of them without doing some background research, she kept pushing, changing the outside deadline threats to force me into making a decision. Of course she didn't get what she wanted.

That's not the first time I've had to be firm with a discharge planner. That's a position which should be one of help and compassion, not someone who's domineering and aggressive.

And thanks for the earlier explanation. It helps keep everything in perspective.

GA, I know what you're talking about. The SW at the hospital where my father died did the same thing to me. I spent the day before my father's death looking around at nursing facilities for him to be discharged to. I felt it was a silly task, because they knew my father was dying and I knew he was dying. Why was I doing this fruitless running around.

The morning of the day he died I said the words that made all the madness end. "I want to call in hospice." The SW nodded and got on the phone to them. Hospice showed up later that afternoon to take charge, but it was a few minutes after my father died. It taught me a lot about what to do in the future. Just let them know that I want to call in hospice (if I haven't done that already).

Sometimes I wonder if they end up in Discharge Planning positions because they weren't very good as social workers. But they're in pivotal positions as discharge planning is so critical. Wish I had some insight into why they're so difficult to deal with.

The fact that the SW felt you should be looking at nursing homes makes me wonder if they really have any ideas what the admitting conditions and diagnoses were. I'm assuming they have access to all the patient's electronic records, so checking the status and diagnoses shouldn't be that difficult.

The one I tussled with last week also asked me to consider a rehab facility for short term rehab, apparently without checking the admitting status because despite having been told he was admitted, I was later advised by the nurse when I did feel that a short rehab was appropriate, that he couldn't be referred because he was only on observational status.

Don't these people communicate with each other? It's easier than ever now because of electronic records and the pager communicators they wear.

Actually dmanbro I totally empathize with you. The last week of my dear Mom's life was spent in hospital. I was totally exasperated by the treatment or lack there of she received.

One doctor stated she had a stroke and was paralyzed on her right side. The next time he came in to see her he said she was paralyzed on her left side. Then the neurologist came in and told us she had not had a stroke. She was not paralyzed on either side, which by the way we had already as a family figured out ourselves.

Then the first doctor in question bullied us in to end of life care. Let me preface this by saying we were in the midst of coming to that conclusion ourselves but he pushed his viewpoints on us when we were conferring about it as a family and he wouldn't back off. He was callous and insensitive in his treatment of my mom and of us.

Once we started end of life care we were told a different thing every day, depending on which nurse we spoke to.

All in all an upsetting experience made even more so by insensitive doctors and incompetent nurses and no I am not overreacting or being overly sensitive. I am a very logical, level headed person who is not wont to sensationalize situations unless its warranted.

So dmanbro I feel your pain.

It's certainly difficult when you're concerned about a loved one's health and well being and you're immediately being pressured into handing over everything that loved one owns just to secure them a little care and assistance. It's tough to not see it as a racket, to be honest. Again, it isn't to label every health care worker, as so many of them are awesome people. She wasn't hospitalized for even eighteen hours before the hard-sell started.

Actually dmanbro I get tired of the way everybody pussyfoots around Doctors, like they are some kind of Gods are something. There are good and bad doctors and nurses just like there are good and bad (insert profession here).

Just like you would stick up for yourself and your loved ones if they were being duped by a slimy salesperson or whatever. You have every right to stand up to medical staff. Just be sure that before you do you arm yourself with as much knowledge as you can so they can't pull out the" we are so superior than you cause we know more card."

I fought for my brother's rights when he was dying in hospital, I fought for my Mom and I would do the same for anyone I cared about.

GardenArtist: I was just floored that someone who spoke to my mother for maybe three minutes (while she was zonked on pain meds no less) was suddenly an "expert" on elder care options for her. And those "options" immediately centered around "how much is she worth?". I hate the way "the system" instantly turns everyone and everything into a commodity to be exploited for profit.

Gershun: I think I've reached a happy medium in that regard. Now that the staff knows us I think they've been pretty good overall. I've been complimented on my knowledge of her specific issues and the timeline, apparently a lot of people simply expect them to figure everything out for themselves, then they complain that the staff is failing, which is pretty stupid and unfair IMO.

But sure, I'm fighting for her, just like she did for me when I was little and ill. A lot of people (even in the family) wrote me off when I was a toddler and here I am pushing fifty and healthier than the lot of them. I believe you get back what you put in and I'll keep working it that way until the end.

Good for you dman. Just keep on fighting the good fight!

I am a caregiver and had a client in the hospital. The client passed away in October. Since 9/6/2014, I learned so much about behind the scenes at the Hospital, that I would know how to handle myself if I was not delirious, but I worry so much about my parents. Great article. Thanks

Livelifefull: thanks! Oh yeah, it's a real education.