How do you cope when your husband is hospitalized and you feel dismissed from the decision making?

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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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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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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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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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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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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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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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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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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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