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boy oh boy! 2 wks ago my partner and I took my 80 yo mother to lunch and she was doing really well. Occasionally she shes things - like puppies that aren't there but all in all not bad. Then she got pneumonia (again) dr. admitted her and we go downhill from there. She spent a week in the hospital - and was changed to a different room every other day which I'm sure adds to confusion. Then she gets discharged to a rehab center. I go to see her there the day after she gets there and she's half asleep at 3:30 pm (in her clothes) because they said she was up and down the night before. She was VERY confused, though she did know us. My brother saw her yesterday and she's getting 2 percocet for breakfast and 2 for lunch! She has never taken this much pain medication before. She has back pain - but this is too much! She was eating tossed salad and anything else in the hospital - now they've got her on pureed food. They say she's pocketing food. Seems that when she goes to these places she gets worse! They've got male attendants changing her depends and she doesn't like this. Does anyone think we can get them to use a female? I'm worried about talking to the dr abt the drugs - but I've never seen her look this bad. She normally lives with my brother and his wife and eats well Am I wrong in thinking that issues like drugs and pureed food might add to her confusion? Previously in a 2 week period she took all of 12 pain pills - and now...!

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I'd like to endorse Vikki's approach regarding talking to doctors about side effects, etc. I'm sure there are exceptions -- I know of some --, but in most cases giving the "wrong" medicine is not a sign of incompetence or carelessness.When we embarked on the journey of finding medication to ease the symptoms of Hubby's Lewy Body Dementia, the neurologist showed me a list of drugs that have been found effective for the vaious symptoms. He explained that for each symptom (one at a time) he would start with the drug that seemed most likely to be effective based on Hubby's history, but not to get discouraged if it turned out not to work -- there were still all the other drugs on the list to try. By its nature it is trial-and-error prescribing. It took a year of careful titrating the doses and trying drugs one by one, but that hard work has given my husband (and me) a greatly improved quality of life for 7 years so far. I know other CGs who get frustrated and disgusted if a prescribed drug doesn't work or makes things worse. They assume the doctor screwed up and they approach the doctor that way. I don't think that is fair, and it also isn't likely to get the best results.

Now, if the doctor won't listen to carefully observed side effects or isn't willing to try something else, then I think a little disgust is called for, perhaps even changing doctors. But do recognize that the science of medicine only goes so far, and we can't expect every single decision to be perfect for every single individual.

The very sad and extreme exception I have heard of over and over usually involves emergency room doctors who administer certain antipsychotics even the patient's chart indicates an allergy and the patient's family pleads against it. That can and has caused permanent harm to persons with Lewy Bodies in their brains. That, I think, is beyond incompetence. It is morally reprehensible.
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You wrote, "I'm worried about talking to the dr abt the drugs - but I've never seen her look this bad." It can be seem awkward to say anything, but you need to. It may be that they need the feedback that the meds are too much, and more importantly that the person was not like this before the medication. I think you are going to hear this multiple times - YES, people can be overmedicated -not everyone reduces does appropriately for the elderly - some patients will not tolerate given medication even in reduced doses - and if you CANT get them to listen you need to get her out of there. I have unfortuantely run into chronic "side-effect deniers" and even "side-efect IGNORERS" among my colleagues, but most of us seek, welcome and need the feedback. When I have to advocate for myself or a loved one, I almost comes across apologetically if I can, to say that I'm sorry we just often don't seem to tolerate the usual meds anyone would have tried for this condition - you are reassusring them you don't think .they were wrong to try to manage pain better, or whatever, just that it did not work for you. It's not necessarily good for to assume that because they had a bad reaction to a med that its a bad med and bad doctor for prescribing it, but its even worse to assume you should keep taking something that makes you sicker.
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thanks for all your responses, meant to get here earlier but have been going back and forth from the nh to the hospital. turned out my brother was misinformed, she is not getting that much percocet. they wrote down that we prefer that she try tylenol first before something stronger. her fingers are so purple and have such poor circulation that they can't get a good oxygen read there. feet - incredibly purple and painful - so yesterday off she goes to the hospital. we went to check on her and found her still in the er. they were very busy. they had to draw blood to get her oxygen level. don't know what they are going to do about her feet, she has chf which I think is why the feet are purple and painful. she's confused too, but that, too is probably the chf. when she goes back to the rehab/nh I am definately going to say they need to have a female attend to her personal needs!
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Listen to your inner self - it is telling you something! The descriptions you shared need to be looked into ASAP Her needs are NOT being met. Pureed food, lethargic, strong meds - red flag alert. Male attendants for personal needs?
Sometimes the male attendants are needed for lifting a patient etc but not for bathing her. Go to her doctor, go to the head of the nurses, go to the rehab manager
keep going up the chain til you get a response - daily. We fought for my sister in law as well - it takes persistance, determination, daily contacts. Keep a journal
dated when you visit or talk to someone - so you have a way to keep up with
all your efforts - carry it with you. Also note in it when you visit her - her conditions, the staff response, list names!! etc. Take photos! You need documentation!
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When my mother-in-law fell and broke her hip she had to go to a nursing home/rehab place. She did really good with the rehab part, but she started going down hill fast. I would visit almost every day and I was the one that volunteered to give her a shower since she said some GUY had done it and he was rough. Whoa, I don't care how many old women's naked bodies a male attendant sees, old ladies don't like that. Then I noticed that she was starting to get a BED SORE! For a broken hip? I got all her caretakers together for a meeting and told them that this is crazy, SHE HAS A BROKEN HIP for Heaven's sake. She's not in there forever. Come on already. My sister-in-law was kinda weirded out with me getting in their faces, but I wasn't mean or anything just determined to change things. And they got better. They made sure she was getting up on a regular basis and moving around. I got her into a wheelchair in between PT and she wheeled her little self all over that place looking around. I also started bringing a plate of cookies every Friday while she was there for the people who specifically cared for her. Point is, I believe that it's easier to just drug those old people in order to keep them in their beds, and quiet. All the nursing homes that I've been in, are under staffed and overwhelmed. By being hands on I was able to keep her motivated and cheerful as possible to keep her physical therapy going in the right direction. It's the squeaky wheel syndrome I think that works best in a nursing home.
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Talk to the social worker assigned to her each pt. is assigned a social worker and become an advocate for her ask questions you have the right to change doctors until you find one who has her best interest in mind and talk to the nurses you have aright to know what meds she is getting and get involved until you feel secure in the care she is getting-I was a nurse and people use to ask me what is a good nursing home and I would tell them the closest one to where they live so they can be involved often and I still agree with that from personal experience-a good nursing home will want the family involved.
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Yikes! When my husband (85, LBD) was hospitalized with pneumonia they wanted to discharge him to a transitional care unit. I said no. Been there, done that, would rather have the work to do at home than the work to do advocating for him in a setting where they do not know him. Yes, you should talk to the doctor about the medications. Yes, you should demand female assistance with the depends. Yes, you should ask for a swallowing test and a therapist to coach your mother on how to avoid aspirating food.

It is sad, but I truly believe that an elder cannot be left in a hospital or transitional care unit without constant family supervision.
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My Mom went to rehab for a shoulder injury. She was in a lot of pain so they gave her Vicoden...which she had never taken before. The pain went away, but she started having hallucinations. The doctor walked in, looked at her, then pronounced her with Alzheimers (which she does not have.) I took the doc outside and told him that if Mom has Alz. then we both do. I asked him to slowly take her off the Vicoden and replace it with extra strength tylenol. The hallucinations went away, and she improved both physically and mentally.
I am not a fan of these heavy duty pain medications and sedatives for seniors. It is a way of controlling them.
As Carol said above, ask lots of questions until you are satisfied. Monitor her meds like a hawk. Also, if there is a better rehab in your town, have your mother transferred. (we had two in our town; one was great, the other was terrible)
good luck
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You are completely right. It's possible the pnuemonia set her back. Getting seriously ill, and being hospitalized can push some people over the edge into dementia. However, this amount of medication seems quite alarming. I'd definitely talk to the doctor. Try making a list of things she could do before that she can't do now - such as eating. Then talk with the doctor to see what she needs. If you aren't satistied, try another doctor.
Take care,
Carol
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