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It's confusing in these days of healthcare that uses what they call "step down" from acute care to rehab or long term care. The case workers and the doctors etc talk to each other but unless the caregivers are proactive they get lost in the decision making. My concerns are that number one , my husband doesn't hear well with hearing aids and he is a gentle and good patient that never asks questions or says no. That causes me to feel like I have to be there every day , all day and because of that I get nothing done at the house. The time that I have to be away from the hospital, I am fearful that they will decide things that will affect us both. There is a time for trusting the medical people ad a time to be cautious. What do you do? It stresses you but you have to try to keep your fears from your spouse so they don't worry as they try to get better.

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After a long process of trying to get someone to return my calls from the V A, I got 2 inspectors from Washington, D.C. who called me and were pleasant and gave me some advise that was helpful. The most important response was when I told the Case Manager and the doctors that I was in contact with D.C., they found the time to be proactive and respectful to me. That squeaky wheel? ( Perhaps). The problem I am having now is getting a straight answer as to what the long term prognosis is. There have been positive things such as finding out that there should be no payment from a veteran who is 70% or above service connected disabled for his or her care. I hope that is helpful to other veteran families. Please check this out. Medical care is very expensive and frightening for families on fixed incomes. I will continue to pass information on as it becomes available for us all. Thank you all for your concern. My family, though large is useless in the help department.I understand that we all have lives and it is difficult to reach out but if your family doesn't try to be there for you, then who? This has nothing to do with finances; just the phone calls or texts or emails to ask how you are. It would be lovely if we all had relatives who could come and sit with the one in the hospital to give you a break. It would be wonderful just to know they care with that call or card and if you're close enough, reach out with a cup of coffee or some soup. I will be ever mindful of that if the shoe is on the other foot one of these days. Bless you all.
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A suggestion I have which works is to get a notebook- and write down everything the nurses, doctors, specialists tell you - date it and make them slow down so you can write it all down. YOU are in charge and you will need to command their attention or they will walk all over you and your husband will not receive adequate care. I agree that the Social worker and advocate are good resources, but you need to have all of your questions written down every day so that you don't forget them. If you ever feel that you are not getting the answers you need or want, go directly to the Hospital Administrator - see how quickly you will get the attention you need. Remember that you need to advocate for your husband. I know how difficult this can be doing it all on your own, but you will feel worse later if you think that you could have done things differently. Once you get into the mental state of "I control this, not them" - you will be a warrior !!! Good luck and know that many of us have walked this path and wish you and your husband well.
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All very good advice. With my dad, we asked the nurse to tell the doc we wanted a family conf to discuss care. So he told the nurse when he planned to be there. He was late but we met with him once. After three weeks, the hospital said they had done all they could..it was time for long term care hospital...not the same as nursing home. A specialty hospital that provides long term hosp care. Insurance and Medicare will stop paying for acute care at that point so he will have to be moved. but should pay for some for some long term HOSP care.
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JMiller49: Yes I believe any of us who have had loved ones in the hospital are faced with the exact same issues. My mother was hospitalized in August and September of 2013 and although I told them over and over and over, that Mom has dementia and will not be able to give you an honest or truthful answer, every single nurse or doctor that walked in would look at her and begin asking her questions. It drove me nuts because they would be writing down her answers and taking what she was saying as gospel truth and I would have to pipe up and say, "I am sorry but my mother has dementia and has given you incorrect answers to almost every single question you have asked....then I have to go through and tell them the truth about the pain she has been in, bowel movements, you name it. When their memory lasts 10-15 minutes you are NOT going to get an accurate answer! It honestly made me want to shake them and ask them what the heck they were thinking or did they even realize a dementia patient is not giving them correct feedback!

It does make me angry as well that the doctor walks in asks a few questions and walks out while you are sitting there and they act like they never even saw you. There is no conversation no telling you how the patient is. If you do not speak up and make your presence known...they will tell you nothing!!! Even with speaking up you feel like they are only giving you half the truth. These doctors are hospitalists anymore, not your own personal doctor and they do not know you from Adam, nor do they care. It is cold and impersonal.

You do have to make sure that you are sitting in that room when the doctors walk in, because in California with hospitalists, there is no picking up the phone and calling the family doctor to find out how Mom is doing. The family doctor's do not know, because they don't see you anymore!

A couple of years ago Mom was admitted for Pleurisy and we knew what it was prior to admitting her and knew she needed antibiotic. The hospitalist doctor saw her a couple of times but she was getting worse because HE NEVER PRESCRIBED ANTIBIOTIC!!!!! My sister ran across the street to her doctors office and demanded to see him immediately and told him that Mom had been sitting in the hospital for 3 days with Pleurisy and was getting worse due to a lack of antibiotic! Her family doctor jumped on the phone and called the hospital and paged that hospitalist and chewed his butt out and told him to get antibiotics ordered for her IMMEDIATELY! Within 10 minutes antibiotic was in her hospital room and being administered.

I know you have things to do at home and while they are gone, it is the perfect time to play catch up (I've been there too) but when they are in the hospital you MUST be their advocate. You have to read about whatever the problem is on the internet and ask questions and just stay on top of their care.

The last time Mom was in the hospital, I was told I could not leave! If I left, I had to hire someone to come and sit with Mom because she could not be left alone! I had been up with her for 36 hours and I needed sleep....too bad for me!!!
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Sorry, that got away from me. Anyway, it works about half the time. I call the nursing station every afternoon for an update and have the nurse get the doctor on the phone if the orders aren't clear. It would be great if I could be there all the time, but I'm doing this from a distance.
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I want to add that, although my mother's chart says that she has dementia and aphasia, that my brother has POA, that I am her Health Care Proxy and that she goes NOWHERE without one of us there, medical professionals still come into her room when she's in the hospital and ask her questions that she can't answer. I've taken to putting a large sign above her bed that says PATIENT HAS DEMENTIA AND EXPRESSIVE APHASIA CALL DAUGHTER AT (CELL PHONE NUMBER TO DISCUSS CONDITION).
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Hi JMiller49,
I think you're very right to be proactive and persistent, although it's certainly not fair that most hospitals make it so hard for family caregivers to be involved.

NextStepInCare.org has some resources about safer transitions, and what you can do if you aren't sure your loved one is ready for discharge.

Also, many hospitals are starting to pay increased attention to the patient and family experience. You can certainly work with the social worker and patient advocate, but you might also want to consider writing a letter to hospital management...I also know some patients and families who have written to the local paper, and that has sometimes motivated a change in how a hospital does things.

Good luck!
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Most long term care facilities have resident/family councils, which are worthwhile participating in. They should be having regular care planning meetings with the resident and their family. If that doesn't happen, I would call for one.

When my cousin was in a SNF, I would phone the medical person who wrote the order. Funny thing happened: they started calling me when something changed about her care. Unfortunately, the squeaky wheel syndrome still seems to work.

Family members still have every right to ask questions of the medical and nursing staff and get answers.

Also, each state has an Ombudsman program to advocate for residents in all types of care facilities. Find out who is your local ombudsman and make contact.
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Have you talked to the discharge planners? Those are the folks, usually social workers or runs who can explainthings in plain eEnglish. Also do you have a friend or adult child you can take along? Sometimes another set of ears is a good thing. All my best to you and you husband.
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I think doreenblue's advice above is excellent: unfortunately, YOU must take action into your own hands and call repeatedly, personally make appts or "drop in" on those "in charge" and with a firm attitude, gently demand information. Gently. Keep doing it. Again. And Again. And Again. This is what I have done, and do, and will continue to do.

Yeah, it's tiring. Frustrating. Makes me angry. But I make myself push my personal feelings aside and Keep Bugging Those Who Don't Fill Me In.

When you are in their face in a manner that does not come off as obnoxious I can assure you that you will be taken notice of.
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As long as your husband doesn't have dementia, he has a right to be involved in any decision-making. Do you have MPOA? If you do, tell the doctors and staff you do not want them talking with your husband without you being present as his hearing aids do not work well, he won't hear them correctly, and he will just be compliant. If you don't have MPOA, ask your husband to tell medical staff the same thing. Either way you need to act as his advocate and the house work doesn't really matter. Your husband's hospital care is the most important issue and you should stay by his side. If you get tired, go take a shower, but come back and watch t.v. with him, talk, and while he is sleeping, read. That way, you will not miss anything that happens. I've done this many, many times. Best wishes!
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I'm not sure this will be very helpful, but I just want to validate your situation. I have done it all..arriving at the hospital at 5:30 or 6:00 am and staying until 9:00 pm to try to see a doctor. Sometimes I would get lucky, sometimes not. But boy do I understand your worry and frustration! I repeatedly asked for a phone call, even kept my cell phone turned on in the overnights, but never received one. If I had the energy at this phase in my life I would advocate for MASSIVE change in how communication is handled during hospitalizations. With that said, I just want to encourage you to hang in there, take care of yourself especially with this being such a long haul, and utilizie the patient advocates and social workers as much as possible. In a long range situation they are your best allies, and never seem to resent daily phone calls. Hugs, and strength to you, and yes, the household chores will wait. Taking care of the both of you is the best thing you can focus on right now.
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This is such a long, frustrating process, JMiller. My heart goes out to you. You are right about the house things - just do what you can. You'll figure out shortcuts for now. If you have family who can help that's good, of course.

The social worker and patient advocate will be your best helpers here. Doctors are hard to pin down anywhere. Carry your DPOA in your purse at all times. The hospital has a copy but if you can present it when needed that doesn't hurt. You've gotten very good advice from the community. We wish you the best in this very difficult situation.
Take care,
Carol
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He had to be admitted to a local hospital in the beginning because it was an emergency situation. Then I began a process of trying to get him into a VA facility and that was before Thanksgiving .
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I have all the papers that I think I need Legally such as the DPOA but in this case I have a spouse who gets better and stable to an extent and then goes backwards in his stability. They are trying to force me to choose somewhere to step him down to in as little as the next two weeks. He is a 100% disabled veteran and they say there are no beds available in a VA hospital.
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You should be able to get one "family meeting" out of them and yes, the key people are d/c planner and SW. You'd have to get a 6-foot high butterfly net and pop it over the doctor's head to make them stay in the room and answer all your questions...that's a recurring fantasy of mine for a few of the surgical and the chemotherapy services around my place, they tend to think no one else really needs to know THEIR plans for my rehab patients. And some of the post-acute rehabs tend to be a little cookie-cutter in nature and seem to think that each different discipline's staff (e.g. PT, OT, ST, nursing, rec therapy) can kind of operate in a vaccuum, which often does not work out very well. They are supposed to be pulling together and working on YOUR (patient and family) goals, and if you don't know what's possible and they don't know what you are thinking and needing, that becomes pretty difficult. Make an appointment with the social worker and/or d/c planner and set up a time to at least meet with them. They need to know what hubby has to be able to do in order to function with you as caregiver at home, and you need to know if that is not going to be possible, and get started on any home modifcations or equipment you might need. Bear in mind I am in a lower-volume pedatric setting where we have the luxury of a half hour meeting done *with* each patient and family every two weeks at a minimum, and that might be too much to ask of an adult sub-acute. But in nearly all settings, an assertive and informed caregiver as advocate is very key. You should not have to spend 24 x 7 to accomplish that, and checking in frequently with whoever they designate as a case manager for him should keep you from being blindsided; also, ultimately, they can't just decide stuff and shove it down your throat if you do not agree, e.g. new meds, surgeries, etc....other than maybe discharge for lack of progress which they have to tell you about with a reasonable amount of time and assistance to prepare for.
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ive read extensively about the state taking elders over. front and center keeps coming up the subject of elder self determination. judges dont take that sh*t lightly. they listen and respect the preferences of the elderly.
well except in texas. in texas the parking meter reader is sometimes the executioner. sorry texas, rocks and lizards render youalls a little pinpoint focused. i mean that in fun. please dont shoot anyone today. ill read the elpaso times later to check on y'uns,.
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You ask them to add you in via phone if you are not at the hospital when decisions are imminent. You ask for a patient advocate if you feel you are ignored. You interrupt them with questions if they are talking around you and ignoring you. You get the phone number for the nurses station and call them daily for updates, who was there, what did they decide etc.
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We have both Dpoa's on each other and advanced directives but that's a piece of paper if you can't be in place when the doctors walk in. They know all about the hearing problems and they have been told that I have the last word on these things. I have had to let the house go and I survive on lots of soup and that's fine. I wash my clothes and all these things get done late at night . The bank thing and paying bills is something that can be done anywhere, thank the Lord. It's just the not know what comes next when you are dealing with insurance companies and case management at these hospitals and acute centers.
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Ah yes, the chasing of the Dr. I've done it many times too when my dad would be hospitalized. The goal is to always be there when the Dr. gets there and it IS usually in the morning but not always. You could get there at 9am to see the Dr. and not see the Dr. until 1pm or even later. Which is your problem, nothing getting done as a result. When our loved ones are in the hospital it's difficult to sit there all day everyday. I didn't sit with my dad in the NH all day everyday. I think there are ways around that like the above person said. I've called the RN many times to find out if there are any new orders or to discuss what the Dr. said (if I happened to miss the Dr.). I've found the nurses more easily accessible and after the Dr. has blown in and out he/she charts the details of the visit so the nurse will have access to that information.

Caseworkers and social workers are also great sources of information although the information they have may be a little dated as I'm not sure the Dr.s orders gets passed along to a caseworker/social worker as quickly as it does the nurse. But people get into the social work knowing that it's a thankless job that doesn't pay well but they do it because they want to HELP and are usually very nice, proactive people. They have a passion for what they do. Find your husband's social worker, get his/her number, and stay in touch.
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I've faced this when my Dad, Mom, and ward were hospitalized. I ask the nursing staff when the doctors make their rounds. It is usually in the morning, and I make every effort to be there for rounds. When I get to the hospital I ask if the doctors have been by yet and if I've missed them ask the nurse to put in a call to the doctor so I can be briefed.

Tell the nurses and techs about your husband's hearing problems, make sure they know he may be agreeing to things he hasn't properly heard or understood. It would be good to get a medical power of attorney or advance directive in place. If you can get your husband on board, perhaps he can tell them he doesn't want to make any decision until he's talked it over with you.

Is there anyone who could help out at home, come in to do chores for you? I just let things go at home, knowing all the dust, dishes, and dirty laundry will still be there. My priorities were rest first, food, clean clothes, pay bills, everything else was catch as catch can.

I wish you all the best.
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