The Patient Claimed He Was Getting Worse In Rehab. Could He Be Right?

Last updated: January 08, 2010

The case: "If I don't get out of there, I'm going to die."

Those were Mr. Z's actual words. He's not a drama queen, so I took him seriously. He was talking about the convalescent home where he'd been staying since being discharged from a hospital three weeks earlier for diverticulitis (a common inflammation of the colon, which can cause bad belly pain). At age 85, he'd otherwise been doing fairly well. Despite pretty bad congestive heart failure, he'd been proud of his ability to get out of bed on his own and take his four-wheeled walker for a jaunt through the mall.

But a week in the hospital left him feeling weak, so the hospital doctor had offered Mr. Z. a choice: He could return home and have a physical therapist visit him there -- or he could go to skilled nursing facility for "short-term rehabilitation."

Mr. Z. opted for the skilled nursing facility. He figured that he'd get more physical therapy there and would be able to build up his strength faster.

Somehow, though, things hadn't gone well. Instead of getting better, he'd gotten worse. He wasn't sure he was getting the right medications. He couldn't get the attention of a nurse when he needed it. He couldn't sleep, because his roommate had the TV on all night. And the physical therapist, he said, was "terrible."

After a few weeks, Mr. Z. felt scared. He asked to go home, but the facility staff told him he wasn't strong enough. He started to worry that he was going to die there.

The challenge: When someone's getting worse instead of better

Rehabilitation, or "rehab," is the process of gaining back one's strength and abilities. Older people often need rehab after the ordeal of a hospital stay, and Medicare will usually pay for it. It's possible to get rehab at home, through a home health service. But many people opt for an inpatient rehab facility (often located within a skilled nursing facility, typically a nursing home), which can provide more intensive physical therapy and more medical monitoring overall.

Unfortunately, although many wonderful rehab facilities exist, others end up feeling like a clichéd "terrible nursing home experience." This isn't surprising, given that rehab often takes place in nursing homes, where quality can range from excellent to spotty.

Mr. Z. didn't know what to do. It didn't help that like many older people, he had no family in the area to visit him and help monitor his care. (Mr. Z. had been paying to live in a board-and-care home for the past several years.) And no one had told me, his primary-care physician (PCP), either that he'd been hospitalized or that he'd continued on to rehab. Most hospitals aren't good at communicating with PCPs; Mr. Z. hadn't thought to tell me himself.

The solution: Sometimes, it's the comfort of home

Fortunately, Mr. Z. insisted that the rehab facility arrange transportation to his regularly scheduled follow-up visit with me. He looked terrible: pale, thin, and unhappy.

We got him out of the rehab facility that very day. Although Mr. Z. was much weaker than his usual self, he was still able to get around with his walker. The manager of his board-and-care, bless her heart, was willing to take him back. We arranged for a nurse, physical therapist, and occupational therapist to start seeing Mr. Z at home.

"But they say I'm not well enough to go home," Mr. Z. said, worriedly.

Well, that's what staff at facilities say sometimes. It's understandable that they'd be concerned about a frail older person who's getting worse instead of better. But often there are more options for high-quality rehab care at home than people realize, such as the variety of professionals we enlisted to come and visit Mr. Z. And sometimes it's the comfort of home that provides an added measure of strength to boost a recovery.

Why? Nobody really knows for sure. But have you ever had the experience of feeling better physically when you're also feeling good mentally and emotionally? Most of us do. Perhaps the varied stresses of a new environment were just too much for Mr. Z. Or perhaps his particular facility or physical therapy program truly were lousy.

In the end, I didn't spend too much time trying to figure out why inpatient rehab wasn't working for Mr. Z. It works for many. But in this case, he wasn't improving "“ even though he wasn't so sick that he absolutely couldn't leave. It made good sense to give the comfort of home a try.

Mr. Z came back to see me a week later. And I was relieved to see that indeed, he was finally starting to look, and feel, better.

My prescription for caregivers:

  • Know that inpatient rehab doesn't always work better than home rehab. It can be a very individual thing.

  • If you or your loved one feels like things are getting worse instead of better in a rehab facility, trust that intuition. Get help. A second opinion from a doctor outside the facility can be a good start, especially if it's a doctor who already knows you or your loved one.

  • Be persistent about asking what kinds of help would be needed to make home rehab successful (such as visits from a physical therapist, a nurse, and so on).

  • Make sure you keep the primary care doctor in the loop about changes in treatment, progress, and medications.

Don't expect the hospital to take care of this important step.

Has inpatient rehab worked in your experience? Or have you found that you or loved one did better once you got home?

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9 Comments So Far. Add Your Wisdom.

4 months ago

My husband had his first stoke in 2006 then August 2014 he had a stoke and left him with a limp. December 8th, 2014 he had a bad stoke. Left him unable to use his right arm and his right leg. Messed his speech muscles and bowel muscles, had no push to have a BM. He went to a Rehab center twice and got C diff. I kept him home when he was not at Rehab or in the hospital, but couldn't transfer him to a doctor, because he didn't have medicate, was over the income. Home Health was coming to the house to see him. He got to where he could walk good with 1 assisting. Then his kidneys started failing him, his kidneys are only working 40%. He went back to the Rehab Center for the second time for PT, but got C diff and didn't get his PT like he did when he was there the first time. The first time at the Rebab, they hurt his arm, by lifting under his arm to get him back in bed after a shower.. Set him back, and just now starting to move his hand again. He spent about 2 months altogether in the Rehap, and now he is in a nursing home, near where we live. I cared for him at home most of the time since December 8th, 2014. It is so hard to take care of our loved ones at home, because of the system. Husband is over the income for Medicate and Medicare will not pay NetCare to transport husband to doctor visits. In the nursing home he is considered full lift. I got him up when he was at home, with the transfer board, but it is just so hard for one person caring a for 24 hour patent. Don't know what to do. He had problems with one of the aids and they changed aids for him, she rubbed his butt raw, (sore butt). And His Right big toe got messed up in the hospital and yesterday the ether aid ran over his left foot with a shower chair, but didn't mean to. His toes may be broken, they haven't gotten back with me yet. He just made up his mind today to stay up to 80 more days in the nursing home, but I am thinking he needs to come back home. We can give it a try for a year and see how he does at home, if his doctor will continue to give his medicine without doctor visits. Home Health can pick up where they left off in the nursing home, PT, OT, ST and two days nurses visits. Bills are piling in but now I have a supplemental insurance for him, but still can't get transportation. Any information to share that could help him at home?

Anonymous said over 1 year ago

All I can say is God bless those poor souls who live out their lives in those nursing homes. My poor mother who fractured her hip was sent to a skilled nursing/rehab facility. Not only was it terrible for my poor mother, but the utter stress and intense worry on my behalf was surreal. My mother's life was in jeopardy in that facility. The horrible errors: from medication screw ups to giving my narcotic Mom meds she wasn't supposed to have, causing her to have a severe bowel obstruction that could've ended her life! It was HELL. If only I knew my Mom could've been at home to rehabilitate. Oh, dear God! What life throws upon us good people. I'm pleased to say my Mom is in her own home!! I'm her guardian and caretaker and I'm very, very proud to be able to care for my best friend! My Mom is in very good health for being almost 90, though she sleeps a lot but sleep is important too. I'm thankful to God to be with my Mom and she is with me.

over 4 years ago

Wonderful posts ! I went through a very, very similar experience with my Father following a severe stroke. At first it seemed like he was getting good care .. but that proved to be "only when we were there to observe". The first time we varied our visiting schedule .. we found him tied in his wheelchair and down by the nurse's station (along with many other patients).. the vacant look on his face made Mom cry and me angry .. I told Mom to go tell him he was going home while I went to the admin office. He was out of there within 3 hours .. with a big smile on his face. We had, thank heavens, invested in an insurance policy that paid a great daily rate whether he was in a nursing home or at home. I cannot stress enough the need for this type of policy if it is possible to insure your loved ones. It enabled my Father to remain a viable participant in his home for 8 additional years .. :) I will never regret the opportunity to be with my parents during this time of their life .. and I miss them.

Anonymous said almost 5 years ago

Just today I had my mom discharged from a rehab facility back to her assisted living place. i've had experience with two rehab places now - this one was better because they did give me list of meds she had been given and told me her blood sugar, weight, and when the paid meds were given. The first place was more organized with PT - but was not open to any input. They did not believe me when I told them she walked with walker - because she can bearly see or hear she doesn't speak often so they just wrote her off. This new place was going thru transistion with PT companies so the information was not passed along very well. I had her pulled out a few weeks earlier than planned when the staff and patients all of sudden were getting ill. I was fortunate that I visited almost daily and could over hear conversations and could notice the double shifts that people were having to work. I hope being back at her assisted living place will work out - so far today she ate two full meals there and they helped her sit in her usual easy chair. They said they would do two person transfers as long as it was needed... I would be best for her to be here, but that would not work out with my family so this is best I can do now. Pls think good thoughts for us! I have to say though that in both cases being in rehab did help my mom - it gave her time to heal broken bones. The first one though the time lasted longer than it should have because she got c-diff while she was there - that made the recovery last months and months longer. Now my mom will be able to return to her exercise classes as soon as the semester starts again so we are lucky...

almost 5 years ago

Thank you for this article. I am caregiver to my 89 yr old mother (live with her) who has Alzheimers. She has me. But we live in a retirement community where several of our neighbors have been put into a rehab by the state, against their will. They have no living relatives and did nothing ahead to set up a health care support system. When one neighbor got sick an ambulance showed up called by a neighbor. The sick person refused to leave home. The police and a social worker were called. Two hours later the social worker said she was a danger to herself and was removed from her home against her will and put into a nursing home. She now is so confused that she cannot return home. A disturbing set of circumstances. Please give thought to what you want to happen if you have no one. This article made me realize how important my family doctor is. I have Medic Alert Safe Return bracelets for my mom and myself as her caregiver. If something happens to either of us, the family doctor is listed as having to be notified right away. You need someone to oversee your health care when you can't. Now I need to have a conversation with my family doctor to make sure we avoid what happened in this article. Thanks again!

almost 5 years ago

Doing the marketing for one of the top elder abuse and nursing home neglect attorneys on the West Coast, i know Mr. Z's and Daisy's husband's experiences are not isolated incidents. Too many convalescent hospitals are snake pits. Often they are merely adjuncts for nursing homes to make a profit. I wish the expert above had notified the State's regulatory department, complained to the facility, and let her local medical community know of the poor care her patient received. Daisy, it's good you filed a complaint with the healthcare provider, and, in addition, there are other entities with whom a complaint should be filed. Some states have ombudsman programs for seniors and vulnerable adults. Notify them of your complaint. If your state or city doesn't have an ombudsman program, then file with the regulatory department of your state. It could be the Dept. of Health or the Dept. of Public Health. As Daisy learned, you must be an advocate for your loved one. Show up unannounced at various times of the day and night, make sure your loved one is getting the correct medication as often as he/she needs it, as well as the rehabilitation services he/she needs. Be a squeaky wheel. Don't hestitate to talk to the director of the facility if your loved one is not getting the services he/she needs.

almost 5 years ago

First the hospital should know what "home" is for the patient. Does this mean the patient is going home alone? Does the patient live with a spouse who has limited ability to assist? In Mr Zs case he was living in an environment where he had capable people to assist, this can often eliminate the need for rehab. As with hospital stays patients are also exposed to other illnesses at a rehab (communicable pnemonia for example). When patients have assistance at home and physical therapy, occupational therapy and RN visits can be arranged at home this is often times the better alternative.

almost 5 years ago

THANK YOU so much for writing this--my Mom, 84, had a very similar experience last year. Generally quite healthy and independent but suffered serious health problems after an adverse reaction to a generic bp medication. Was shifted from intensive care to hospital long-term and finally into 'best' nursing home in our area for short-term rehab. Luckily brother and I alternated visits to be with her as much as possible in person. From the beginning I found staff weirdly intrusive in useless ways and totally absent when needed. They also treated Mom as a helpless befuddled old person though cognitively she was doing quite fine and since she used to be a banker, knew more than they did about the financial aspects. BTW, after some strange exchanges I finally figured out they were actually listening in on our phone calls?!?! (on the phone they charged us for? and 'installed' for $36 by sticking the cord in the wall?). At one point staff 'confronted' her for 'talking to outsiders' (me) about the horrific SLOP they were feeding these people--and a nurse called me at work to do the same?! Mom was supposed to be on a restricted diet. Though sick, Mom was clicking on all pistons and stressed her concern about the diet, set by her doctor. We'd been led to believe they worked in tandem with the doctor only to have one of the so-called nurses tell me 'if he has anything to say, he can call us'--which I immediately relayed to her doctor and his wonderful nurse. The "home" then insisted their diet was heart-healthy (slop, ice cream and oh yes, ice cream). When there in person, I ate with Mom on most occasions and almost gagged at some of the offerings. She generally ended up with canned soup and then the twice-daily ice cream. They actually gave some patients insulin shots at the table while shoving thickly iced cake in front of them--how's that for healthy? I'd love to know how many of their patients *develop* diabetes after eating there too long? Mom had agreed to this stay with the understanding she'd get intensive, twice daily physical therapy. For the period when Medicare supposedly helped pay, she got very half-hearted PT and the home insisted she could not walk on her own, had to have a helper--but try to find one. Lovely tiny garden outside -- but nowhere to sit for these older, often ill residents. When the Medicare money ran out, the home assured us Mom would still get 'rigorous' PT and it would be included in their regular charge. Guess what--she got NO PT whatsoever, even 'pretend' PT, except that by then she was able to leave with me and could walk around the mall a little. Oh yes, at that point she had to use an oxygen tank as well. One day while I was with her, she tripped over the base (easy to do) and ended up falling on top of it so that the handle really banged against her skull-- a horrible fall, though thank God, after a few seconds she appeared to be all right. Staff told me they'd check her every hour or so--I went to the charge nurse to confirm this?--but in fact they only did a couple of times and ignored her comments about her arm hurting badly. I blame myself I didn't call her doctor; Mom seemed ok and made it clear she did NOT want her stay extended due to this--but when we saw him soon after, he was incensed. Protocol was, she should have been taken to an ER and they should have called him immediately--as he had told them to do, even at home--but they didn't want that 'on their record.' After about a week, when it became clear there would be no real PT, spoke with my brother (who'd also spent time out there with Mom) and then Mom. We already knew she was eager to get out. Her doctor at that point agreed she was getting no value from the experience and 'could buy a lot of help for that money.' Had she stayed at the home for PT, I am sure she would only have deteriorated, though the staff insisted they were 'worried how she would get on' when she was OK'd by her doctor to leave. BTW they later charged her a humongous amt for 'their' PT (though not provided) and Medicare later 'retroactively' greatly reduced the PT benefits--so she'd have done as well staying at home with a phalanx of helpers (and much cheaper than what that stay in H--- ended up costing). BTW after being paid $9000 for her 5? weeks, the home attempted to put the same claim through her secondary insurance. The home had told us they routinely dealt with short-timers but clearly didn't want to lose customers. (They also didn't really seem to understand how to bill for this.) They told Mom a few times that they 'assumed' a 6-month stay?! -- which isn't exactly individualizing care. As it was, the only help she ended up getting, upon coming back home, was a twice-monthly maid service --which she really has come to like. Very motivated, she quickly got back into the swing of a morning breakfast at McDonalds--where they now look out for her, since it's hard to balance things on her walker--and then a whiz or 2 around the inside of the mall, sometimes stopping, sure, for a breather. When she was finally cleared to travel recently to visit out my way (and brother's), Mom was moving pretty darn quickly on the walker and only needs to use it due to dizziness caused by a medication she has to take. The other critical aspect was, like the fellow in this story, she is still lively, interested in current events etc. but at that nursing home, other than me or brother, had no one to talk too. Many of the folks there (probably without visitors?) appeared very sedated, propped up in wheelchairs...there was an activity director and room--but just one huge TV set, no books, no computer, no games. TVs in the rooms had not been updated for digital so had mostly infomercials. Magazines we brought were thrown out by staff! If you have someone go in, even temporarily, make sure they have a phone from Day 1 (I finally got Mom to accept a cell phone after all this)--and make sure you or someone who cares is there to show up, each and every day, several times a day--or at the least, let them know you will be calling. A lot. And make sure as you point out here, that the GP is aware immediately of your person's admissions to hospital, to long-term, and establishes contact with them. (This place seemed upset that we ensured Mom got out for doctor appointments--but in fact they had no doctor on call, one RN as charge nurse and a great many people called nurses who in fact had taken a weekend certificate course.) Sorry to go on so long--but this is so important and I am still haunted by the folks out there who didn't have someone to watch out for them--Cassie

almost 5 years ago

My husband was also sent to a rehabilitation facility supposidly for three days to build his strength after a two week hospital stay. He was transferred on Friday. Supposed to come home on Tuesday. He was left in bed for all three days and the only contact he had was for meals. When he had to use the bathroom, instead of getting him up to go, as they had done when he was in the hospital, he was given a bed pan to use instead. Those three days did him more harm that good. When I questioned why this had happened, they said because it was Friday, the staff had not checked the orders and it was not done until Monday. I admit I did not go to the facility every day because I thought he was getting adequate care. What was supposed to be three days turned into two weeks. After he was released, I did file a complaint with his health care provider. When you have someone in one of these care facilities, be sure to check on how things are going from the first day. I will add that he was in this facility again for care and they were very good with him. Sometimes people just fall between the cracks unfortunatly. (My husband passed in April of last year.)

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