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Okay here's the story, let me know what your advice is:
I have an 82-year old elderly father with remarkably good health and no signs of dementia. He does however have severe arthritis in his back and legs and it's to the point that he can hardly walk, pull himself up from a chair, etc. Last Sunday (8 days ago) his pain was so severe that I did what I truly thought was best and took him to the ER.


The hospital admitted him, did every test in the world and found nothing wrong except severe arthritis and weakness from "deconditioning" because he's been spending lots of time in bed (because of the arthritis pain). They gave him really strong pain meds, which he had an allergic reaction to, so they also gave him benedryl in a large dose. Three days into his hospital stay he was so loopy and confused from the meds that he couldn't even compose a sentence.


After a week in the hospital under "observation," (being drugged up with strong pain meds), he was discharged to a "rehab" facility to get stronger. I had such wonderful hopes this would be great--that he'd get off the pain meds, get his mental faculties back, have therapists to help him get stronger, etc. . . .


But, because of COVID he's alone is a crappy nursing home/rehab room, they aren't giving him therapy, they have him laying in a bed with a brief on because they won't even get him up to help him to the bathroom. They said he has an "altered mental state" and keep asking me if he has Alzheimer's. (side note, my mother died of Alz and I know what Alz looks like--believe me, dad's mind is sharp as a tack). What they are seeing as an "altered mental state" is the loopiness still from all the pain meds in the hospital.


Long story short, a week ago he was living independent albeit in lots of pain. He was mentally cognizant and mostly happy. After a week in the hospital he's confused, agitated, and now laying in his own pee in a crappy nursing home alone in COVID isolation. I was able to visit him today and he sobbed like a child saying he'd rather die than stay where he is.


What should I do??? I want to just pull him out of the nursing home/rehab center and bring him to my house, but after a week of laying in the bed in the hospital he's very weak and I know I'm not trained to help him get up, go to the bathroom, that kind of stuff. I could afford 3-4 hours a day of home health care, but what would I do the rest of the day? I've expressed my concern to the nursing home/rehab center, but I think they look at his state now and think he's always been that way. They don't realize that a week ago he was 10 times better just in lots of pain and needing pain management.


Oh dear lord, I thought I was doing the best thing for him when I took him to the ER, but I think I just killed him. Advice please???

OK - I am an RN and here is my advice.

1 - Take him home. He will not get off the medications that LTC are giving him that cause allergic reactions as long as he stay there.

2 - Ask his primary care doctor for consults:
A - Physical therapy - to strengthen his muscles to protect his joints and get him back to being ambulatory. They can come to the house several days a week. You will need to be relentless in having him do his exercises several times a day.

2 - Orthopedic surgeon - to address his arthritis that is causing the pain problems. These doctors can suggest several treatment options besides surgery. I know; I have arthritis in my hands and knees. If your dad's arthritis has any rheumatoid factors, he would do well to see a doctor who specializes in this to try therapy to "dial down" the immune reactions in his body that cause the arthritis.

3 - Pain specialist doctor - to find alternative therapies and medications beside heavy doses of narcotics. He/she or the orthopedic surgeon may have success with TEDS unit, braces, analgesic medications... If a "a pain pill" is needed, this doctor will monitor the dosage and side effects to maximize good pain control and better quality of life.

4 - Home health care - While he is getting physical therapy, home health care aides can come to help with the tasks that are difficult for you to complete. If your father reaches a plateau in his rehab at home, physical therapy can advise you on home health care devices and their use. Home health care aides should be familiar with these devices as well.
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11/23 update: Thanks again for everyone's answers and advice. I wanted to share what happened. The rehab place he was in was a such a god-forsaken hole! It was made worse by the fact that he had to be in isolation for 14 days because of COVID, and I could only visit for 30 minutes 3 times a week. He had a catheter in him from the hospital. After a few days the rehab place tried to take it out but their nurses were unable to do so! (Hello! Nursing 101, people!) He contracted a urinary tract infection. A few days later they called to say that they "found him on the floor beside his bed." My sister called over immediately to ask how in the world that happened but they wouldn't give a straight answer. They won't use the word "fall" because it was unwitnessed, so they can't say for sure that he fell. Well, they can't say for sure that he DIDN'T fall either, and how else would he have ended up on the floor???.
They did say after they "found him on the floor" that they contacted his doctor (this was about 9pm last Tuesday). The next morning I spoke with his doctor who said she was in fact not informed until Wed. morning. I had a fit and asked that he be sent to the ER to be checked.
We took him to ER, where he was admitted again, and I begged them to not discharge him back to the crappy rehab place. They agreed and kept him. For a day I thought we were out of the woods and things were on the up. But he wouldn't eat and actually continued to decline. By Friday he had failed a swallow test at the hospital. He failed again on Sunday. He hasn't eaten since Friday (today is Monday) and is sleeping almost 24 hours a day now. Doc suggested a nose tube to give him nutrition for a few days and see if his strength comes back, but 2 teams at the hospital were unable to insert the tube as apparently he has a (previously unknown) hernia that prevented the tube from correctly entering the esophagus. So, here we are, with him not eating, unable to get nutrition, and sleeping 23 1/2 hours a day.
Also, yesterday the doctor saw some signs that made him want to run an abdominal CT and d-dimers test. He found a 5cm aneurysm in his abdominal aorta and signs that it may rupture. Doc said it was time to call Hospice, which I did today.
Dear Lord, 3 weeks ago my father willingly got into my car so I could take him to the ER for severe pain. Now he's on Hospice after the worse 3 weeks of his life, with one awful thing after another. When my mother died of Alzheimers a few years ago, we were all ready for it. She had been gone really for a long time, and her death was seen as the kindest thing the Lord could have done for her. But this feels so different. I can't help but feel like I just drove him to his death 3 weeks ago. He trusted me so much, and this is what happened. I think deep down in my heart I realize this is one of those things that was nobody's fault--just a series of crap things that no one saw coming, but it's so heartbreaking, and I'm not ready to give up. I feel like I started this and I'm the one that needs to make it better. But at this point there just doesn't seem to be any "better." We just go from bad to worse to holy crap. Apparently rock bottom has a basement!
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SnoopyLove Nov 23, 2020
I am so sorry to read this! How horrible for you both. You are right, you didn’t cause this; sometimes awful things happen.

Your dad is blessed to have such a loving child doing all she can for him. It speaks well of you both!

Please keep us updated.
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Imho, you may not want to bring your father into your home (I did see your November 9 update) as it may be more difficult than you originally perceived it to be. Suggest consulting his physician. Prayers sent.
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Some great information below. My dad went through a similar situation after two toes were removed. After the anesthesia and drugs for sundowning both in hospital and rehab the staff all thought he had dementia. He finally got back to his senior apartment with my mom. We had a hospital bed, walker and wheelchair. Home health included speech, OT and PT. Insurance covered those expenses. He needed agency CNA's during the day and private sitters for the evening. It took a while but he did regain some strength and thankfully his head cleared. The drugs are brutal for the elderly!
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Your father may be suffering DEPRESSION from being in the hospital which will accelerate decline and pain meds asked for to mask it. He may also have other nasty problem known as pain med addiction.

I would have asked for a psychiatric evaluation and treatment if deemed necessary. Further there are psych meds like Elavil (tri-cyclic antidepressant) which is also used for chronic pain and without addiction issues. So something like that (if he is able to take it) will fix not only depression but chronic pain.
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I have severe osteoarthritis and have for many years, so I especially sympathize. You and your father have been through a horrible sequence of events. As others have said, you have done all the appropriate things. It's very probable that sparse staffing because of COVID helped to make your father's care so terrifying. Your plans sound good. What I want to emphasize is that a big part of treatment for the pain of osteoarthritis is usually exercising the affected joints appropriately and regularly. So doing is very likely initially to INCREASE pain, not to decrease it. This is especially going to be the case if you've been mostly immobile for some time. PTs/OTs should know this, but it would be best if your father had a knowledgeable orthopedic surgeon who gave the PT/OT prescription and reiterated the situation to the PT/OT. Also, your father needs to understand this, assuming you can get him back to a mental status approaching that that he had when he went in, so he won't panic if he initially feels worse after therapy, especially the day after. If you have any qualms about the therapy he's receiving, be sure to let the doctor know; therapists can be changed.

I'm mentioning OT as well as PT because if his doctor agrees, ASAP an OT can help him with things like getting into a wheelchaor, getting to the bathroom, etc. These are not usually part of a PT's practice.

I'm concerned also because the main response throughout seems to have been primarily throwing meds at your father. Meds are important, but the quality of life is not much improved, if at all, if your pain is lessened but you're living like a zombie! Also, it's not realistic to expect to get to a state of no pain, just a state of manageable pain. Assuming again that you get your father home and that he improves both physically and mentally, you might look into a pain management program for him. Such a program can be useful in teaching non-medical strategies for dealing with pain, such as mindfulness meditation. (These are not likely to be useful for someone with dementia.) Such programs are often found in university-based medical settings, and are normally covered by Medicare. I know I'm very much ahead of things, but I'm getting ready to reduce my time on this forum, so I wanted to bring it up now. Good luck!
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cherokeegrrl54 Nov 13, 2020
I too live with the at times unbearable pain of osteoarthritis in hands spine, hips and knees. Just waiting for covid to be better i have need of total knee replacement. Im 65 and some days it’s terribly hard to even get outta bed. But i keep moving forward. I may have to crawl one day but i WILL keep going forward!!!
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I like your answer. I would also get him off whatever pain killer they have him on. You may have to wean him off though. I would get him to his PCP ASAP.

Gets me that even us lay people know what symptoms pain killers can cause but the Pros say " can't do PT because he is too weak." And family says "he didn't have this problem until he started pain killers" and the Pros don't say "maybe we have to look into that".
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cetude Nov 13, 2020
You cannot get him to his primary care physician if he is bed ridden,
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Update: thanks to those who have responded. I truly appreciate your advice. I have a sister who lives 3,000 miles away but she's a hospital RN and I spoke with her at length tonight. We both feel like no option is ideal, we just have to choose as best we can. I do think I'm going to call his primary doctor tomorrow and see about a script for home health care and home PT and just bring him to my house. My mother had Alzheimers for 15 years and I never took her in because I knew her care was overwhelming and I still had young-ish kids at home. Now all my kids are 16 or older and I truly feel like with a couple of weeks of PT and some good nutrition and care that Dad will be strong enough to go to assisted living, which is my goal now.

Of course the problem becomes what I do if he doesn't actually end up stronger in a few weeks and then I'm right back to where I am now. . . . Oh, this is so hard!

On a different note, when I said I could afford home health care, I actually meant I could afford it by using Dad's money. He has the funds to cover a few weeks of home care. And as long as it stays just a few weeks, we should be good. But again, the problem becomes what to do if it ends up being more than a few weeks.
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cetude Nov 13, 2020
I hope you know how to take care of a bedridden person. Consider he may be suffering depression and have become addicted to pain medication to mask depression. Ask him if he is feeling depressed. He probably is. Get a psych evaluation and treatment if necessary (tri-cyclic antidepressants are also used to treat chronic pain like Elavil).
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Another thought; ask one of his doctors if he qualifies for a different level of care.  Select Specialty is a longer term care hospital; my father spent a few months in one, then another one, while recovering from massive and complicated physical breakdowns.  He had to recover enough to be in rehab, and the interim stepdown hospital was the option of choice.

That was when I first learned of stepdown, long term care hospitals.

There are some in Florida:

https://www.selectspecialtyhospitals.com/patients-and-families/admissions/special-information-for-florida-hospitals-only/
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NLH, tomorrow I would contact preferably his orthopedic doctor, or a PCP if he doesn't have an ortho doctor, or the hospital doctor who scripted for rehab.  Explain the situation and tell him/her you need to find a better, more responsive rehab facility, but you understand that Medicare may question the move w/o a doctor supported recommendation.

This is what I had to do when what I thought was an outstanding rehab was just the opposite, with more problems then I could have possibly predicted, including losing Dad's chart and failing to give him Warfarin, which almost caused repercussions.

I called his ortho doctor; the PA said they'd write a letter of support to Medicare if it challenged the change.   I rushed around, found a really good rehab and advised the crappy rehab we were leaving.   And we did.  It was a horrible experience.

Medicare never challenged the move, Dad got good rehab, and we both learned a lot.

If you know anyone whom you can trust who can recommend a good rehab, visit it (if you can during the pandemic), bring a list of questions and consider changing.

If this doesn't work out, and b/c your father is probably physically weak, ask your doctor about home therapy, including home care such as washing, etc.    The PT and OT will address the weakness, but if you can also hire home care it will help both of you.

I got recommendations of home care companies from the Alzheimer's Assn., called them, and finally found one that met standards.  

Are there any relatives, church people, friends who could help on a light basis when PT, OT, nurse and home care aren't there?   Your father probably will sleep a lot as well.

Another possibility is to request DME supplies; PT and OT can bring catalogues and arrange for commodes, walkers, possibly a rollator, grabbers and other assistive devices.

I can't imagine how distressing this must be; I feel your sense of panic and anxiety.  I've been there  a few times and know how unsettling it is.

Please let us know how this works out?
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How sad--and what a Catch-22 situation your dad is in!

Can't function due to extreme pain, but can't GET the pain under control unless he's being monitored and dosed 'round the clock...hence the NH.

My mom, in her late 80's, suddenly could not tolerate any kind of pain medication. She would fall every single day--amazingly never broke anything, but she was unable to get relief--anything stronger than Tylenol made her sick.

I hope you can find a listening ear at the facility and try to get dad more relief and get him back home--IF that's what you feel is best. Sadly, the pain from arthritis is demoralizing--I know your heart wants to bring him to your home, but you yourself sound doubtful that you have the 'tools' to have him live with you.

I can only wish you luck as you navigate these waters.
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Your Dad was taken to the hospital because he was off his feet because of severe pain, and because he needed help, not so that you could kill him, and you DID NOT KILL HIM. The fact that this has gone very wrong is awful, a tragedy really, but it is not your fault. You aren't a felon. You were trying to help.
It seems clear to me that returning home without pain meds is not an option, because you already had to take Dad to hospital because that wasn't working. Is he still on medications now? Are they opioids? Find out first what medications he is on. Is he on anti anxiety meds. Until these meds are withdrawn, you can't know if Dad is reacting to hospitalization and rehab (MANY MANY elderly DO) or to side effects from meds and confusion and being out of his own place.
First thing to know is this happened, you were doing the best you could, he needed help, and it has gone wrong.
Second thing is to decide what can be done going forward, because he cannot stay home unable to move around.
Do know that you may have just bumped up against something that cannot be fixed. What complicates all this also is Covid-19. Start with talking to Rehab, someone who is CASE MANAGER or ADMIN or Social Worker. You need someone on the case so you can ask about medications. You need someone so that you can explain that he was FINE before going in except for the arthritic pain.
I am so sorry this has happened to you. Talk to everyone you can. I am likely wrong to assume you have POA. So if you do not the Social Worker can almost certainly help you get an emergency temporary guardianship so you can speak with people and help in making decisions. You are between a rock and a hard place and I couldn't be more sorry for you; just take it one day at a time. If your Dad can come back mentally there may be a chance to return home even if wheelchair bound with help, until he improves.
Don't pay for care; you may have need for your money in future. Don't take him into your own home; things aren't going to get better and you cannot make the decision to take on 24/7 caregiving lightly.
I am so dreadfully sorry you are facing all this, but one final "THIS IS NOT YOUR FAULT." Please don't burden yourself with THAT as well, or you will paralyze yourself with it.
I know just how frustrating this is. Before my bro died the hospital he was in kept saying "he is perfectly fine; he agrees to all we are doing". He wasn't fine. He had Lewy's dementia. And he didn't want all the things they were doing, and every day I had to try to call and get things stopped from Heparin Drip to Cardiac Cath. I was one half a state away but it was like being in another country where we didn't even speak the same language, nor could I speak to the same person twice. It was a crucible.
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