The doctors decided to step my husband down to a nursing home. Why do I feel angry?

My son is in ICU. They Intubated and slowly let him breath on his own. He is fine . Now they want to put a trach in him and send to rehab . They want family permission. No proxy

My Son is Intubated in ICU almost breathing on his own . They want to put a Trach and send to rehab .

Good for you! If you can find anywhere that takes ventilators. It doesn't necessary be a respiratory hospital. Vents are the highest reimbursement by Medicare and Medicaid. You may find them in the better NH or Skilled Nursing Facility. I don't know what part of the country you live in. Some parts are better than others. I live in the Boston area if I can help you. Good Luck!

SOME nursing facilities DO medicate to keep patients quiet and under control...how awful.
I'm POA....She refers them to me on everything.
Sorry Anna you are being so rushed. Sometimes it's best to be assertive and just SAY so. You are being rushed! Ask for more time to get your head together with what your rights and options are. Get an attorney or call the dept of aging for attorney advise...someone to talk to. I know how it feels to be rushed. Sounds like they are hiding something even if they aren't. Why rush so? If you tell them that this action makes you unconfortable and you need advise and direction...can they hold off a minute?? They should. Take care of yourself. I've lost a lot of sleep before I found I needed to speak OUT and get what I need first. My best to you.

Step-down choices are limited for tracheotomy patients. My husband lost precious recovery time from a severe stroke because the only sub-acute facility within 30-40 miles from my home or work that would take him (a tracheostomy and g-tube patient) after ICU discharge basically ran the clock on our insurance. Yes, he had serious conditions when he went in, but what we were told would be done to help him at the subacute did NOT get done -- OT and speech therapy. Their response was that he was in quarantine, so they basically left him alone all day despite what was on the chart. The covering doctor at the time he was admitted told me, before they had even evaluated him, said that if he didn't improve within a very short time frame, he should be admitted to a nursing home and I should also arrange for palliative care (which is not the same as hospice, though often confused with it). And despite having both my family (elder-health professionals) and a non-family medical advocate constantly at them, they failed in the following: didn't provide therapy that was on his chart, didn't give him painkillers when needed, didn't do basic hygiene so he developed a fungal skin infection, and didn't splint his paralyzed left hand once it went into contracture. Most of their explanations for failing to administer therapy were that he was in quarantine for a respiratory infection, which he did have when he went in -- but that's what they were supposed to be able to deal with. He also told me that one of the aides told him he was 'evil' because he was incontinent, a patient abuse situation that'd be hard to prove in court if the patient was cognitively impaired, which he was at the time. If we had had the time, money and energy to file a lawsuit, I surely would have, and wouldn't have stopped until I'd driven them into the ground. But that wouldn't have helped either of us. I was trying to keep my job, move us to a handicapped accessible home, apply for and get SSDI for him, and plan for his aftercare at home. He spent seven months in a (very good) nursing home trying to make up for what the subacute facility didn't do. He's partially recovered and I am glad he is home with me, but I often wonder what could have been done if he hadn't been drydocked early on by an institution that was supposed to be able to address trache patients, and which completely failed on the therapy component of his care.

If it's not hospice, arrange a doctor appointment for your husband with his doctor, have a transport company get him there if you qualify for it or can afford it or have the nursing home provide the transportation, you can even ride with him. Talk to the doctor about your husbands condition and tell him your husband would like to go home. He'll release him to go home under most normal circumstances. Either your husband is very very ill, on hospice or you're being railroaded into paying nursing care out of pocket. Don't know which, but as his wife you do have rights, you need to enforce those rights. If he is unable to sign anything, you have the right to take him home if you can reasonably provide care for him. Good luck.

The hospital violated the rights of the patient by shipping your husband off to a place of their choosing without your (and I assume, his) consent. If there is a family member or close friend that you trust, let them take on the financial aspect of your husband's care while you focus on his health.
Depending on his state of mind, it may be too late for power of attorney (POA), hence the need for legal assistance in becoming your husband's voice.
VA gives new meaning to disjointed confusion! If your husband is a vet, call the nearest VA medical center and ask for the Social Work department (that's "Work", NOT "Worker") that deals with Long-term Care (LTC). There's a form that a doctor fills out about the patient's health that has to be submitted to enroll them in the LTC part of the VA Health System. For us it took less than two months from application to approval - too bad it took us a year to find the right person to speak with!
If he's not a vet, contact your local area on aging to see what resources are available for home care. With the expansion of Medicaid (they're taking higher incomes and adults who don't have children), your husband may qualify for nursing home care at home, if that's what you would like. Remember that getting Medicaid does not mean giving up your house or (most of) your Medicare benefits. Then there's SSI if the trach is going to be long term.

In short, PLEASE DO NOT try to manage all of this on your own! Even going to elder law, you need a second set of ears - that family member or close fried - who will take notes and ask questions you may not think of at the time. This is NOT something to do alone!!!

State resources: ombudsman, Office of Health Care Quality (for complaints/concerns about the care received in a hospital or nursing home), Area on Aging (or Office on Aging, provides resources for seniors on a state and/or county level)
Federal resources: Medicare, Social Security (disability), VA (if applicable)

I think you have gotten some really good answers. Everything moves so quickly in hospitals now. Once your husband no longer met the criteria for acute care the hospital had to transfer him to a lower level of care or they would not have been reimbursed for his care the nursing home must think he can get a bit better since they are admitting him to a rehab unit (I don't know his diagnosis) they are monitored to see if patients are achieving their rehab goals so they must have some goals in mind. I'd ask what they are. I think the acute hospital should have given you more notice and a chance to visit SNFs in your area that take vent/trach patients. As others have said they are hard to find. They have to employ respiratory therapists. More R N's , more aides etc. I'd ask for a list of SNFs with vent/trach patients & go look them over maybe a friend or relative can come with you. Meanwhile, I'd follow the advise some of the posters gave you especially visiting often speaking with the MSW about any questions you have especially the mattress and rails but some states don't allow rails to be up. And the candy bowl is a great idea!

Telling you that you have to come in a get your husband's newspaper is wrong. Refuse to do it. Someone in the NH can do it and should do it. Bed rails. I have never heard off it. Ask them it put a set of railings on both sides. Look for a hospital that takes patients with emphysema that are on vents continous oxygen. They will take your husband. But, I have never heard of a facility not being able to care for a trach. I would talk to a Social Worker about all your issues and have your husband transferred closer to home. A NH can never dictate to you what you should do.

What does POA mean having difficulties with family member being tranfer to a nursing home far away from the family hospital, ready to release a below the amputee with mental health issue.We are trying to find a facility close to us, but a facility close to hospital is trying to transfer him to their facility, what can i do to get more time

You feel justifiably angry because the situation is out of your control, and no one in the system seems to empathize with your confusion and sense of powerlessness and helplessness. Anger is a perfectly natural response and will help you steer through the storm that is the healthcare system. Just understand that you need to channel that anger appropriately; use it to give you the energy and momentum you'll need to advocate for your husband's care. He is lucky to have you, there are so many people without an advocate who are tossed about the system as if they were an abandoned car that has been towed to an impound lot.

Lots of good advice here. Some stuff I learned:
--Being there a LOT and having lots of people coming and going to visit a patient is the best way to keep the staff on their toes about your loved-one's care. They have to budget their time, and they will spend it where they think they are being watched. If there are outsiders visiting a patient, then outsiders are paying attention. The staff will respond.
--Bring candy or nuts in a bowl (dollar store?) with "Thank you from *patient's name* in room XXX" written in sharpie on the bowl itself (so even staff that doesn't see the original package knows who donated it), and put it on the nurse's station closest to your husband's room. Ask for the bowl back, refill it and do it again. If you can, get a new bowl whenever one goes missing, write on it, refill it and leave it for the staff. They *will* remember you and your patient.
--Label all his clothes and shoes before bringing them in to the facility, and, as mentioned above, do his laundry yourself. Otherwise you'll go broke replacing the clothes that go missing.
--If you don't like the mattress they have for him, bring an egg crate foam pad in yourself. They don't like you to bring your own equipment, but sometimes you have to do what you have to do. You may need help putting it on the bed, and if staff objects, see if you can't leverage your "candy" points into a new mattress.
--As mentioned above, don't let the "on-staff" Dr. forget that you care about this patient either. Ask for a meeting with the Dr. his/herself. Talk to them about your loved-one's care and your concerns.
--Get in touch with the Ombudsman at the facility and let them know you are going to be paying attention to what is going on. Let them know that the bedding isn't acceptable, and bring up all your concerns. Hopefully they will address your issues in a timely manner.

Lastly, and most importantly, find yourself an attorney that specializes in ELDER law. It is imperative that you have the right paperwork in place and that your home and other assets are NOT in your husband's name -- BEFORE you have to apply to Medicaid. Don't go to an attorney that "knows" elder law as I did. Go to one that SPECIALIZES in it and can walk you through the mazes.

Good luck to you; I hope you can find a way to use your well-deserved anger to help you advocate for your patient. Remember not to take it out on the staff if you can help it. It's the administrators that need to hear your angst. And get a lawyer!

J - so is he ventilator dependent? If so, I am totally going to go with the viewpoint that Isn'tEasy posted. You are going to find that the options out there are very very limited for facilites who will take tracheostomies & ventilator dependent residents. This place probably has the expertise on staff to manage his care, it will just take time to adjust & adapt for him, you and for the staff to get the rhythmn of his care needs.

Now at some point you are going to have to deal with how to long term pay for his care. The 20 day Medicare is fixed, if he has a good BCBS or other secondary policy then they may do the required co-pay for days 21 - 100. So look into that.

Then there is the whole VA system. I have no experience with all that, it seems to be a paperwork mice-maze worse than Medicaid. If there is a VFW or other military organization in your area, call them to find out who does VA ombudsman work - there are folks who have made dealing with VA their mitzvah.

If you go the Medicaid route, please keep in mind that you do NOT have to impoverish yourself in order for your spouse to get Medicaid. You are the considered the "community spouse" and as such are allowed & expected to keep assets to enable you to stay in the community and maintain your lifestyle. Most state have the cs asset limit @ 113K in nonexempt assets and then you can apply for MMNA - monthly maintenance needs allowance (kinda like alimony). In my mom's state, the MMNA is set low but you can file for an increase if need be for MMNA to about $ 2,100 a month but you really need an attorney to make it work. So instead of your hubby having to do a co-pay to the NH for his SOC (share of cost required by Medicaid) you can get it diverted to you for your MMNA. All this can be overwhelming, I'd really suggest getting an elder law attorney to go over your options and do the changes needed. LIke most couples have their insurance polices as each other's beneficiaries, once one is on Medicaid you do NOT want this to ever be possible. Need to change all that & asap. Lots of other things too which you will be too overwhelmed to deal with or evaluate, For community spouse applications the date of the application is the "snapshot" day and your financial situation is based on what is there on that day. So if you need to pay down or payoff a mortgage, or trade in your 2 cars for 1 newer car, or pay off other debt, all this needs to clear the bank before the snapshot day. Really good legal & their paralegal staff can be invaluable in getting this done. You can't do it all.

Also please check with the facility to see what their emergency plan is. We went through Hurricane Katrina - and one huge issue was what to do with patients who were ventilator dependent and how back-up generators were to be allocated, etc and then the whole lawsuits & Dr. Pou incident afterwards. So many NH in my area were so affected by all this that now it's only a few will take a ventilator dependent resident.

Oh the reason why to change the beneficiaries is that if something should happen to you and you predecease him, you don't want him to then be made ineligible for Medicaid due to the insurance money. & who would be there to deal with it too.

There are strict licensing and staffing requirements for SNFs that care for trach patients. That's why there aren't as many of them. Also, not many elderly opt for life support. There are more options for patients who are able to engage in a full rehab program (3 hours of therapy per day). Those facilities typically do not accept frail elderly.
A nursing home that accepts trach patients must immediately establish the wishes of the patient's family regarding resuscitation because arrest is an ever-present possibility. It can be harsh for the family of the patient, but necessary.
Your observation about weekend check-in is spot on. Weekends are not a good time to check in anywhere in the health care system.
I understand your frustration, but you should direct a portion of it towards the hospital which ditched your husband on a Saturday and without managing your expectations about the rehab facility and process. You were guessing that the weekend admission MIGHT have been part of the problem. The hospital KNEW it would be. Why didn't they transfer him on Friday?
Give the place a chance for a couple of weeks. See if issues can be ironed out.

Sorry, I asked about your dad. I meant your husband!

Was your dad in a hospital? If he was then he or whomever his POA was signed a form that says the family has the right to refuse to have the patient released if they need more time to search for appropriate places or if they feel the patient isn't ready to be released. This happened with my mom. It's the case managers and doctors who want the patients out the most. They get bonus checks from medicare for "timely" releases of patients, whether the patient is ready or not. But you have to file the petition as soon as there's talk so that the advocates have time to call and say no. Then the hospital has to abide by it. I'd also get an elder law attorney lined up. The hospital moved our mom to some hokey facility in Tampa that was so incompetant and they just let her languish there. She died about 1 1/2 months after being transferred out yet again. If I were you, I would search out nursing homes (if your husband has already been moved) that are closer to you. DO NOT take the recommendations from a hospital. Sadly, this facility in Tampa hired some shady liars because someone there stole my mom's ss# and filed a fraudulant income tax refund in her name 2 weeks after she died. We found it was filed from a house in South Carolina. So I would also get all the names (first and last) of all nurses (even at the hospital) who are taking care of your dad. That way you'll know who is responsible for him and if things get bad/better to go after/thank. But take the time to research and definitely look at the ratings, visit the facilities, etc. to get your husband closer to you. As soon as they know it's takes you x amount of time to get to the facility, that gives them plenty of time to clean up their act. You want to be able to show up unexpectedly to keep them on their toes. I sure hope things go better for your husband. You can also approach the hospital director and say your rights were violated, that they trumped you as a family member who's the advocate for the patient. And fill out the survey the hospital sends and put that in there. It goes to the gov't for review of how the hospital/nursing home treats its patients. I wish you well and your husband a speedy recovery.

You've had the "rude awakening" I'm afraid. I went through the same thing with my mom. One difference, I had all the POA and Living Will documents in place having gone through this with my aunt.

See a lawyer! Don't overpay for an "expert" who wants several thousand up front, but find a reasonable lawyer who you can pay by the task. Get that DPOA.

It helps to be present a LOT at the nursing home, advocating for your loved one. I believe the crappy beds and such are pretty standard. As to his clothing, better if you do his laundry if you can ... put a hamper in the room with his name on it.

If you aren't liking what you see at this nursing home (and it's not near you, even worse), there are sites on-line that allow you to search. See what else is available in your area, and you have to visit to get a real idea.

The 20/100 days is standard as we all find out. My goal with my mom was to get her into Assisted Living (half as expensive) as soon as possible. As much as possible, get involved with his medical care... what meds are they giving, are they doing adequate PT, etc. Question everything!!! Some of the doctors associated with nursing homes are awful... give unnecessary expensive meds, overmedicate, don't even SEE the patients (go off records from the staff). Once I got my mom into AL, the first thing I did was fire their doctor and take her to mine. Got her off half the meds in the process too!

Is this a VA center he is in?

There is a great need for more qualified nursing homes that care for People who have tracheotomies . Only perhaps one in ten have a respritory team to care for these people. That is why my husband is where he is because this place was the only one with a trach care option. I am working on getting him out of there because there are things that are just unacceptable and he is 100% service connected veteran with all the rights that are supposed to go with that. I'm making noise so we'll see.

This sounds like Hospice care, is that what he has? And if you can't cash his check, are you transitioning to Medicaid?. I hope you have family member who can help you get through this. And please contact your family attorney, too.