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LokiGrrl Asked June 2016

Worse after rehab?

The lady I take care went to inpatient rehab recently for her decubitus ulcers. Good things that happened were we got a hospital bed for her at home and a new home care company. Bad things: When she went in, she was frail, but lucid most of the time, had a sense of humor, could feed herself, and we had made progresson the contractures in her legs. She came home dehydrated and nearly catatonic, the leg contractures were worse, with new ones starting in her arms, and she's unable to feed herself or drink water by herself. We literally have to feed her with an eyedropper. What did those people do to her?

Llamalover47 Aug 2016
LokiGrrl: I hear you! My mother was being kicked out of a Nursing Home because she was "deemed too well to stay there." Less than 48 hours later, she suffered a stroke there. They transported her to the hospital where she deceased.

PattiRaeT123 Aug 2016
My father was at a rehab and was discharged with dehydration, overmeds, and a raging UTI. The hospital was amazed he was still alive. They couldn't even draw blood as it was too thick BUT he was on blood thinners. First and foremost, these places do not make sure elderly patients are hydrated. Also, check their medication dosage and if it's being given correctly. Request monthly blood and urine draws. I asked for medical records and because I didn't have POA I couldn't get any info. GET A POA FOR EVERY SENIOR CITIZEN IN YOUR LIFE. IF YOU DON'T YOU CAN'T HELP THEM. ASK AN ATTORNEY. DO NOT USE ONLINE POA FORMS.

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LokiGrrl Jul 2016
I didn't mean to blame anyone here for what happened. I was scared and frustrated when I posted and I appreciate all the responses, because they calmed my fears and helped me formulate a plan of what to do. The lady is still in the hospital because the rehab sent her home malnourished, dehydrated, and with a massive infection to boot, which they still haven't found the source of. We're hoping that when she is hydrated and nourished a little more, she will be able to pass a swallow eval. Otherwise she will have to go to SNF. I only want this lady to be healthy, or, if she is going to go, I'd like her to go easy and in comfort. Sorry if I offended anyone.

Llamalover47 Jul 2016
ThereIsNoTry: Yes, of course we all care here. Excuse me, but the OP said "what did those people do to her?"

ThereIsNoTry Jul 2016
sorry, my comment was addressed to llamalover47...

ThereIsNoTry Jul 2016
Loki, what is your point? She got a good explanation that she needs to be careful that she is not overlooking the inevitable decline and if that's not the case she should get the nursing notes from the facility. Do you think that if she just said to the facility "what did you do to her?" they would offer any information at all? She needs to know what she is looking for ..... the nurses daily notes. Yes we do give a care here.

Llamalover47 Jul 2016
LokiGrrl: Well, first of all, I think you need to ask your question "what did these people do to her?" to the rehab facility and not us. We are a caregiving forum. I am glad that your LO went to the hospital and got the needed tests done.

ThereIsNoTry Jul 2016
I really wish I could take advantage of hospice for my Dad who is not going to die any time soon but whose quality of life is rather low. Hospice is a service, not a place, and I hear they offer emotional support for someone who needs it, like he does. If there is any chance that they are eligible please interview different hospice companies before you commit and find a good one who isn't in it for the money. It sounds like she is getting all the emotional support needed from you you guys and maybe doesn't need more. But they might help your friend as things get worse. I think you are doing a marvelous job.

LokiGrrl Jul 2016
Update - she really perked up after some IV fluids. They are keeping her for observation, hopefully not for too long, and as soon as cultures are back they will begin more antibiotics. I think at the rehab they mistakenly attributed her lethargy and unresponsiveness to the Alzheimer's, when it was really infection and dehydration. She does have Alzheimer's, that's not really in dispute, but she's always been talkative and interested in what's going on, even if she does tell me about how her dead husband told her it was perfectly all right to drink Clorox (she has no access to the Clorox, rest assured) and that we have another house right next to this one. So I am hopeful, but will take yall's advice and try to be more proactive about being informed and keeping my roommate informed. Also I am going to go through the discharge papers with a fine tooth comb, since they include some daily notes and things. I really appreciate the help and support!

vstefans Jul 2016
If the Alzheimer's diagnosis is correct and not a misinterpretation or assumption, yes, it may be time to think about comfort rather than rallying to recovery. But seriously, do let them treat the infection and then again question whether psychoactive medications have been addded that could be knocking her out. The deterioriation sounds a little acute to pin it on Alzheimer's.

I hope you can find a sympathetic physician who will go over things with daughter and fully address the possibility of anything reversible, in a compassionate way.

pamstegma Jul 2016
Loki, as I see it you have two problems. The mom's time is very short. The daughter does not understand the medical terms and has simply opted to block out any possibility of her mom dying. If you talk to her about Hospice, she will accuse you of wanting her mother to die. Let the nurses and social workers work through her emotions with her.

LokiGrrl Jul 2016
I appreciate all the answers - I was in total freakout mode. She went to the actual hospital today; apparently she has an infection but they don't know where it is, and that's the cause of the unresponsiveness. So, CT scan, chest x-ray, blood, urine, etc., and they started IV fluids right away. As far as her prognosis, one nurse suggested hospice and my roommate kind of flipped out and said no way. Other than that I don't know, except that in her discharge papers she's got a diagnosis of end-stage Alzheimer's along with the ulcers and contractures. I hope she's able to rally from this. :( My new action plan is to take over the paperwork. Roommate doesn't know what half of it means and also doesn't like to think or talk about the illness, so she just lays it down somewhere and half the time I never see it. I work in medical records, so I can translate it for her and also keep myself more informed. Then maybe I won't feel so helpless! Thanks again everyone.

pamstegma Jul 2016
Did anyone give you a prognosis or recommend Hospice? Sit down with your roommate and get details that I think you may not have.

Countrymouse Jul 2016
I'm sorry for the shock you must have felt at the state she came home in. Keep an open mind, though, won't you, until you have all the information; because if you assume that something must have gone wrong and can therefore be put right, but it sadly turns out instead to be an unavoidable progression that can't be reversed, it will be harder to accept what's happened and focus on making her as comfortable as possible.

I'll keep my fingers crossed for her, all the same! And your roommate is a lucky person to have a staunch friend like you with her in this.

LokiGrrl Jul 2016
Thank you vstefans - my son's name is Stefan :D - I have asked my roommate to get the medical records so we can get an idea what's going on. I appreciate the responses from people soooo much!

vstefans Jul 2016
Either her underlying condition has gotten worse, OR there are unrecognized drug side effects - did they by any chance add an antipsychotic medication?

LokiGrrl Jul 2016
Thank you - she has wound care nurses three times a week at home, and I work at home so I am always here. She is *supposed* to be getting home PT, but we haven't been told when this will happen. In theory the home care company is also working with the rehab social worker to get a home health aide to help with feeding and changing (she is bedbound and incontinent). Her daughter, my roommate is the POA. We are busting our butts taking care of her because we love her (I've been a friend of this family for almost 20 years). It's so hard to get help. I kind of feel like I'm at the end of my rope and I am really frightened at her current condition.

GardenArtist Jun 2016
You might consider asking her family, especially if any are proxies under a medical or legal POA, to order a copy of the records. This sounds like a bad case of neglect.

You can also do some research through a local ombudsperson (individual or agency) and learn more about this facility. Some of the bad ones are well known.

Is she getting any home care nursing or physical therapy? This would the ideal situation, especially since the home care company would receive limited care information (which should include meds) that could shed some light on what happened.

If the prior facility won't script for home care, ask one of her physicians. This lady needs some help.

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