My Mom tells me she isn't feeling well but when NH staff ask she says she is fine. Anyone else experienced this and how was it resolved?

Keaton how right you are!! We nearly lost my Mom in November and all my siblings came running. One of my sisters in particular said "Oh we should all feel so guilty, except you. Blah, blah, blah" Now my mom is stabilized and they all scattered to the wind.

I visit her at the nursing home once a week, more if she needs something they can't give her and phone every day and I still feel guilty sometimes. I imagine if their conscience was really bothering them they would try to do more.

I never know if mom actually feels "well" or not. She can hop out of bed one morning, fully cooperate, take her pills, drink her coffee, cooperate with dressing. The next two days, she may want to sleep till nearly noon (no meds given the night before to account for that), and once up refuse to even drink a sip of water let alone take her pills or eat a decent lunch for me for maybe the next two days. I ask her if she hurts anywhere, is dizzy, nauseated, can't swallow, you name it and I get "I don't know." Very depressing some days. Today started out bad and now we're up and running and waiting for the PT girl to come, not that mom wants to exercise. She may hear voices all day long some days telling her we're gonna be arrested, that we're gonna be killed, you name it. The next day or evening may be calm. All I know is I'm relieved if I can get her to drink something at least. Is she lying? No, but sometimes I think there's a tiny element of playing me. When I can sit with her when not working my 5-night shift in the back room, she will be mostly fine the whole evening, little jabbering or worrying. I can leave her in the front room for 15 minutes alone and she may or may not get angry with "those 3 guys in the front yard" or the police, etc. A party every day.

And Gershun, as far as visiting too much--or being too attached--you will not regret that you did that.
What you would regret, and most likely your siblings will go through this, is the fact you could not share more time with her. People who don't or can't visit go through much more torment when their loved one passes away.

Pain is subjective. Your mother feels more comfortable telling you how she really feels. Yes, she is not feeling well--psychologically or physically--but she is not feeling well. She probably just wants to see you. I know my mother sometimes would tell the nurses that she was fine because she didn't want any more handling from them. When I was there I could get them to slow down and be a little more sensitive. Good luck and love!

Yes, I think it is a politeness issue, too. I've had Mom moving slowly and groaning in pain (her back-degenerative arthritis), but when I take her to the pain treatment doctor and they ask her how bad it is on a scale of 1-10, she will say 'oh, maybe a 4'. (!!!!???!). Very frustrating! In her defense, on their 1-10 chart, the high number symptoms include pain so bad that she has used illegal drugs to control it. My mom wouldn't do that if she was rolling on the floor in agony, so she won't give them one of the high numbers.

I'm pretty sure she is not telling staff the true feelings. I notice that in my husband, and he will tell me what is really going on, however, family members are subject to the sympathy card loved ones can give. Try asking her how she is in front of staff and see what her reaction is. If she has just told you she wasn't feeling well, and then tells staff she is "fine", what does that tell you? You know your mother better than we do. Stay calm, it is a common event.

Gershun, the one that set my teeth on edge not long ago was that they "had to redecorate the spare bedroom." Which in my mind became:

"… you would *literally* rather watch paint dry than come and have lunch with your mother..?"

Yes it would make for interesting reading wouldn't it? NOT!!!!!

"Too busy" is such a stretchy term, isn't it, Gershun. Too busy doing what? That's actually a serious question, one I'd quite like answered with a list. As in, what are the activities that take up your time, hour by hour, day by day, and take precedence over your mother's very natural wish to see her kids every so often?
Please state in order of priority, showing hours required.

It'd make fascinating reading, I believe. But not for our mothers.

Amen to that, Gershun.

When my mom was still living at home her doctor would give her 60 tablets of tylenol 3's with instructions to take as needed. One time when we took her to emergency the doctor there was going to send her home with percocet. Imagine.... a ninety year old taking percocet as needed.(I'm probably spelling it wrong) but you get the drift. My mom has failing kidneys so painkillers are not something her body can metabolize as it should. But having said that a tylenol now and then (regular strength that is) shouldn't hurt I'm thinking.

As far as my siblings, yeah they justify their actions and also claim they are busy with their lifes. Fair enough I guess but this is our mom we are talking about here. She raised 7 of us on her own as my dad died when we were very young. Sacrificed every day. So when they say they are too busy to see her....forgive me if I can't stomach that.

My theory of life is that when you're in your 90s, you must be in pain from alot of different stuff (my mother certainly is) and you need and deserve general, scheduled pain relief. Tylenol works for my mom in general, right now she's on Tramadol, which is stronger, but whatever it is she's on, I very sweetly insist that it be scheduled and no "on request". With regards to your sibs, Gershun, I'm not sure I understand their attitutude-"don't get so attached to mom, she's not going to be here much longer"? Have I got that right? Sorry, I find that a bit odd. But it might explain what's going on with my younger brother! My other brother and I are acutely aware of the fact that mom's time may be short. At least statistically, the fact that she's survived a year post stroke and post broken hip at 91 is remarkable. We visit, we keep her up on the gossip and grandbaby doings and pictures and we monitor her care to make sure she's comfortable, not distressed and not over-treated. I think it's fine of you to do for your mom!

Gershun, (just checking, Tylenol is paracetamol, isn't it?), I have SUCH mixed feelings about this! Every doctor will tell you that paracetamol works more effectively as prevention rather than cure, therefore give 1g every 6 hours (or as close as you can get to it) consistently to keep pain levels damped down.

Ok, got that, I'll do that. So I do that.

Just one more problem then: in my layman's view, and based on lengthy observation, paracetamol is about as much use as a chocolate teapot when it comes to arthritic pain. It may be better than nothing - hope so, or I really have been wasting my time - but that still isn't great. It makes me spit! I just wish someone, somewhere, would come up with effective systemic pain relief that doesn't have disastrous side effects (not that I'm unreasonably demanding or anything…).

I understand how you feel about your siblings' attitude. It's not that they don't care, it's that they don't do anything about it, don't you think? - and presumably then there's some kind of self-justification going on, whereby they come up with 'good' reasons why it's a 'bad' idea to get too closely involved. Makes one gnash the teeth a little; but as you say they can help or not help, as they please; we still all have to do what we think is best.

Thank-you for clarifying ba8alou. My mom has mentioned that when her arthritis is especially bad and she asks for a pain pill they make such a production out of getting her one she is hesitant to ask again.

Gershun, just to be clear, my mom's pain meds (tylenol) had been written as to be given only when she requested them. Since she always tells staff she's not in pain, I had them start giving them to her on a schedule, every 8 hours. My mom has arthritis, compression fractures and residual pain from hip fracture. She has difficulty asking, so why not just cover what pain might be there? Hope this clarifies.

I've talked to my Mom since and she can't recall telling me she had a sore throat.As some of you have said I do believe she had a sore throat when she told me this but.....well you know.

I've been struggling with the fact that I have siblings who see me as a person who needs to distance myself from my mom in order to protect my heart for when she dies. But at the same time they rarely go to see her or get involved when problems arise.

I guess what I'm trying to say is if I had some support from them maybe I wouldn't get so alarmed when my mom says she is feeling bad but since I feel like I'm responsible for her it falls on my shoulders to make sure she is well. (not that I'm complaining) I adore my mom and that would never change whether I had one or fifty people helping me.

I will continue to monitor my mom's complaints and see if there is a pattern of any kind and will phone her doctor this week and ask him to look into this. Someone on this forum had mentioned (I think it was you ba8alou) that you had gotten them to change your Mom's pain medication to an as needed basis. I will try to do the same.

You guys are all so great!! Thx for all your advice.

Gershun, something else occurs to me. There seems to be a subset of older doctors who say things like "nice people don't get dementia and your parents are nice people"(from my uncle's doc, believe me, he had dementia). And my mother's doc, who didn't get to see her after her stroke, but assured me that she didn't have vascular dementia, she was just stressed out. I think it's a self protective thing.

It is extraordinarily difficult, Gershun, I agree. So many fine diplomatic lines to tread. The thing is, even if you adapt a strictly assertive, patient approach - the sort of broken record technique one is advised to adopt with stroppy teenagers - and keep on firmly and calmly asking your questions until you get satisfactory answers, there are still some doctors who can go off in a huff about it and then where are you? Shut out of discussion, is where.

I don't know if this might work for you, but doctors in the family, when speaking to doctors treating family members, tend to say something like "I wonder if you think such-and-such might be worth considering." Translation: oi, fathead, why haven't you tested for xxx? - only of course they wouldn't ever be anything but courteous.

Again, the thing is, no doctor should EVER take offence at being asked questions by a relative. And yet, and yet, we all know some who do, all the same, don't we?

But how is your mother doing? If she's still complaining (I mean in the clinical sense, not in the whiney sense) of a sore throat, then the only thing to do is speak to the doctor, on the phone or in person, and tell him how concerned you are that his respected patient (and I agree it is a good sign when they treat the person, rather than the dear little old lady) still seems to be in discomfort. I hope she's soon feeling better.

Hey C M. I've met this doctor briefly. The time I mentioned earlier and then again when we were first looking for a nursing home. I know that he has told me that Mom is a very respected patient of his cause of her strength and how she has withstood so much in her life. I have been unimpressed with the fact that certain doctors have treated my mom like an infant instead of the intelligent, strong woman that she is and this particular doctor does not do that. I do believe he is on her side but I have also felt at times that he may have that "God complex" that a lot of doctors have as well. Not open to my opinion maybe? I don't know. Its hard to know what to do. I don't want to step on anyones toes.

Hm. Gershun, I don't want to make mischief but you have got a bit of a 'who guards the guardians' situation going on there, haven't you. I think I too would have, not suspicions, but reservations. Are you otherwise happy with this doctor's care?

No, not at all ba8alou. I appreciate the criticism if it is constructive and it is and has been. Its nice to not feel alone in my concerns.

Gershun; I hope that you don't take the criticism too harshly, it certainly isn't meant that way! Your Mom is so very luck to have you on her side!

I guess I should never have said my Mom possibly lied. My bad!! The dear old thing doesn't lie. You are all right in your responses. I remember way back when before all of this started taking my Mom to visit her doctor where I voiced my concerns about Mom's failing memory. He was very protective of my mom and I almost got the feeling that he thought I was trying to manipulate the situation in some way. Having said this though the memory test he gave her in office was laughable and he said she passed with flying colors. I of course know differently but his original diagnosis has never been questioned and since he is the director of medicine at the nursing home where my mom lives I've been hesitant to voice my concerns as he is lauded and respected by the staff there.

You have all made some excellent points and I will definitely have to be more assertive in making sure my Mom is heard (not just by me) but comfortable voicing her concerns to the staff there as well.

Sore throat? Well, have them check for lymph nodes in the neck and look at her throat, and if she does not have a pharyngitis they can see, I'd bet on reflux (stomach acid) and get them to try treating that even if she won't say the word "heartburn." Failing that, get her an ENT to look in there a little better. We picked up a Candida esophagitis or two that way that had no other outward signs.

You'd be amazed what people will tell anyone BUT the medical and nursing staff..or won't tell anyone!!

My mom will complain to me but will always tell the doctors she's feeling fine. My aunt (her sister) was the same way. It's not lying, they just want to present their "best" selves to the doctor (or anyone in authority). They're the opposite of people who complain at the drop of a hat.

So I've learned to speak up to the doctor to report what mom has previously told me. When asked about what I say, mom will agree. My mom has no short-term memory, so she will also forget that an hour ago she complained of pain in her foot or leg. So it's enough to make you crazy!

But I know with mom, her complaints in the moment to me are real and not manipulative. But they could change 20 minutes later.

I think my mom has a similar problem as cm ' s mom. We have very polite proper mom's and the correct answer to "how are you feeling?" is, "just fine thank you". Gershun, I seem to recall in one of your other posts, you said that your mom doesn't know that she's in a nh? Has she been diagnosed with dementia, and is the staff aware of that? My mom has vascular dementia from a stroke but does not present as having dementia to the casual eye. I took me a couple of go rounds getting the swallow and nursing staff to get the message to all the staff that mom was telling us she was in pain but telling staff she was fine. I had them change her Tylenol from "as needed" to scheduled so that her arthritis and occasional headaches get covered. It's a marathon, Gersun. Talk to the unit manager and the social worker about what you're observing and you'll solve it together.

Gershun, I've sat with my mother in the ER and listened to her tell a Triage Nurse that she's "very well, thank you." I think she just has a very odd idea of whose business it is how she's feeling.

It could be, as Maggie says, that she's just (what my father used to call) "wingling" at you, like that sound of generalised discontent that babies put out when there isn't really anything to cry about but they'd like some attention; but on the other hand it could be that she's happy to confide in you but clams up when she's asked by someone she doesn't know very well.

Are you able to get to her NH? Because if possible, seeing as there is something in particular that she's mentioned, you'd want someone to come and examine her while you're physically there to encourage her to she speak up. And ideally, get her favourite member of staff there too, so that next time that person knows how best to get answers out of her in front of the doctor. Best of luck, and hope there isn't anything to worry about.

Maggie I guess I should of been more specific. I did ask my Mom what was wrong and she said that her throat hurt and that she had told the staff and they were going to get her a pill. I realize that elderly people have vague complaints sometimes and everything probably hurts but my mom is the type who never complains and it is out of character for her to mention anything. Usually when I ask her how she is she says she is fine. In fact if she had been more of a complaining person to begin with she wouldn't be in a nursing home to begin with but she had neglected herself so much that she nearly died at home.

This happens to us a lot. It's very frustrating. With my mom, it seems to be part of the ongoing issue that she can't figure out or remember who is who. When she calls and says she's not feeling well, I ask "have you told the staff?" Usually she'll say "no" or 'who would I tell?" I then tell her to ring the bell and tell them she's not feeling well, or in pain, that it doesn't matter who she tells. It it gets better and worse, but we all stay on the same page of getting her to inform staff of what's going on, as long as she's able to. Please don't frame this as lying if your mom has dementia. It's brain fog not purposeful.

Personally, without knowing your mom and knowing absolutely nothing about her condition, I'd say she's lying to you . 'Cept I wouldn't really call it lying. I guess I'd call it lookin' for a little sympathy from you.

Get specific with her when she says that. "What hurts?" "Well, what doesn't feel right?" "What do you think the probem is?"

Mom was in a nursing home for 2-1/2 months in rehab -- with many other health issues to go along with recuperating from her broken hip. I personally can't imagine calling the nursing home if mom said, "I'm not feeling right." I'd be asking more questions.

Please!! No offense!! It's just that MY mom is 87 years old. She's never "feeling right." If I had nothing more specific to go on than that? I wouldn't be bothering staff. "Oh, that's too bad . . . I hope you're feeling better tomorrow." This assuming I'd asked questions like, "What hurts?" "What's going on?"