I'm confused.

I have been very worried about my mom recently. She is in an ALF, and no matter what time of day I call her, she complains about being in pain. I know she is getting pain meds PRN, but doesn't understand the call system to ask an aide for help, so I worry that she's not getting pain meds when she actually needs them. She also says the pain pill doesn't take the pain completely away, but "it takes the edge off."

I'm confused because I spoke to her hospice nurse today and he said that every time he sees her (also at different times of day) she is up and walking around, coherent, and not complaining of pain. He asks if she is okay, if she is in pain, and she says, "No, I'm fine. When I need a pain pill I ask for one, and they bring them to me."

The nurse told her I have been calling him and describing that she is in continual pain, and doesn't remember when or if she got her pain pill. She said, "Oh, he doesn't know what he's talking about. I'm fine. He must be exaggerating."

Has anyone else experienced anything like this? Any idea why my mom would give me such a different impression than she gives her nurse? I didn't think she was capable of doing something like this on purpose, but maybe I'm way off base.

I have had similar problems with my mom. Who knows why it happens, sometimes I think it is just an excuse for my mom to call me or that perhaps it will inspire me to whip right over there. Sometimes she may indeed hurt and she is not likely to really be asking for meds when she needs them. Who knows? You just have to play it by ear. Watch her yourself, find out what all the aides, think, etc. Be sure everyone knows you are concerned. I actually spied on my mom at one point because she had been complaining so much about everything. She looked like the "belle of the Ball" - happy and busy, and being fussed over by the other ladies. The aides had told me that was the case, but it helped for me to see it for myself.

I don't know why it happens but it does. When mom broke her hip we stayed with her 24 hours a day (long story) at the SNF. She'd complain that she really hurt and needed something for pain. We'd track down the nurse and tell them mom needed something for pain. They'd come to mom's room and say "you need something for pain honey?" And mom would say no, I'm fine! They'd leave and she'd start complaining of pain again. It wore me out and I never did figure out where the disconnect was other than during one lucid conversation mom said well I had a bad headache and I only wanted a tylenol not a pain pill! ???
Marie

After similar disconnect between conversations and stories, I also spied a number of times on my mom when she was in the ALF. Each time mom was quite different from how she had described her situation to me. She went through a period of several years where she would say mean things about me behind my back, terrible things. Now I know why I got such dirty looks from people who had contact with mom! It wasn't funny then, though. Not at all.

I don't think she was really capable of planning out that kind of manipulation. It was just part of her disease. It took some of her quirks and made them a lot worse. Looking back to even before she was diagnosed, this exagerrated quirkiness was part of the early disease process. It lasted well into the middle stages for her.

My mother's ALF kept track of every single medication they gave her, OTC or not. Perhaps you could have a look at the records if you are her Health Proxy.

Journeywriter,
Can you visit very often to see if she seems to be in pain?

Our solution: we give my mom pain medication on a regular schedule rather than seeing if she asks for it. Frankly, it would pretty unusual to be 80+ years old, extremely sedentary, and NOT have some level of aches and pains that would benefit from painkiller.

Same story as yours:

My mom has a non-healing fracture that is very painful when moved in certain ways.

But if the doctor asks her if she ever has any pain or discomfort, Mom says "absolutely not."

Then the doctor says, "OK, I'm going to raise your arm."

She barely touches it and my mom says "Oh, that hurts!"

Similar story - my mom complained frequently of back pain. Tells doctor she never has any pain at all!

Same thing happened when she had an acute fracture.

So doctor and I discussed it and that's when we decided to just make pain medication a routine part of her meds. People in the moderate and beyond stages of dementia are simply NOT good self-reporters.

Me too, me too - same story. My mother would always constantly complain of being in pain. When she sees me, she's always in some sort of pain. To everyone else, she is fine.

I realize that this was part of the beginning of the process for her. She had this "phantom" pain. It was in her jaw. It would prevent her from going out. When she went outside, the pain would be so severe that she would throw up. Doctors visits after doctors visits. Testing, MRI's, botox injections, no one could find any reason for the pain. When she slipped into the next stage, the pain miraculously disappeared. She doesn't remember ever having that pain.

When she sees me, she has some pain somewhere that she insists on telling me about, I mean horrible pain. The nurse can walk in and ask my mother how she is and my mother will reply that she's fine and has no pain.

The problem is that I don't know if she really has any pain. This whole thing is such a "pain".

When the complaints about pain are just directed to the closest LO, doesn't it seem likely that it's partly a bid for attention? Maybe mixed up with the relaxation that comes with talking to someone you're close to? Remember how little kids can hurt themselves and hold off on crying till a parent is available?

I've noticed that I do the same thing. Sometimes I get frustrated or upset about a project I'm doing for work, but I don't really start complaining and ranting about it till I have my partner's attention. If she goes away, I usually straighten up and just get the job done.

When my kids were little, we went to a Dreikurs-based child guidance clinic in Chicago. We parents were told to do our utmost to give our kids a lot of positive attention when we could catch them NOT doing the things that had been driving us nuts. It seems to me that this could sometimes apply to dealing with our older loved ones, too. It's hard to practice, but it couldn't hurt.

Journeywriter,
Is this pain expected to continue as is? will it get worse? Can your Mom tell you where her pain is? Has it spread? Is it localized or is it general? Has your Mom been on the same level of meds for a while? (Has she developed a tolerance?) When was the last time the doctor examined your Mom and assessed her pain area/level? Lots of things to consider...just thinkin'

In one experience with my Mom, she complained to me about pain in her back. Dad didn't think it was anything, but she winced and complained and fussed and I insisted that she needed to be seen. (Here I was thinking kidney stone, kidney infection, UTI, etc.) So, under very loud protest, we took her to the doctor's office. (Now, for sick visit's you have to see the NP, which is fine with me, because they're great.) When we got to the office, Mom told the NP she felt "fine". I was the one who had to run through the list of Mom's complaints. The NP didn't find anything on exam, but went and got the doctor, just to be sure. When he came in, Mom told him she felt "fine". He examined Mom, stepped back from the exam table and asked Mom to take a magazine from him (she had to reach for it). Well, she yelped like a little pup! He figured out what was wrong with her - she had pulled a muscle in her back. No one had any idea how she had could have done it.

Why did she did not admit it to the NP/doctor? Was it because (1) she had to impress and cover her deficits for the "others"? (2) she wouldn't admit there was anything wrong for fear of hospital admission? or (3) when she was sitting still, the pain wasn't intense and she didn't remember how much it could hurt when she was being questioned? I have no idea. All I know is that I'm the person she complained to - loudly and clearly - so I was delegated to be her voice. Three days of heat and tylenol and she was much better.

I think we have to trust our instincts with our ADLOs. We know them best. If you feel the circumstances/situation isn't right trust your gut. Keep speaking, if it falls on deaf ears, look for another set of ears. Just because someone is a "professional" nurse, doctor, therapist or social worker doesn't mean that they know everything in the situations we will face. Don't forget YOU are the "professional" when it comes to knowing your Mom.

I really appreciate all the similar stories and helpful suggestions. I didn't think I was the only one who had experienced this, but it's good to have that confirmed.

For those of you who asked for more specifics, here's a brief synopsis of Mom's condition. She has stage IV colon cancer with a colostomy and multiple metastases in the lungs, dementia (not formally diagnosed as far as I know, but appears to be stage 5/6), and diabetes. In September, her oncologist gave her a prognosis of "about six months."

She complains of severe pain in her left shoulder and arm. A recent x-ray found nothing remarkable (indicating no bone cancer, thank God). She has mild arthritis which may be causing the pain, but nobody is really sure what the problem is. Hospice has prescribed the "smallest possible dose of morphine" PRN. They seem to think the problem is somehow related to the spread of the cancer, and have told me it will only get worse. Because I am worried about Mom's ability to subjectively describe pain, her morphine has been changed to 7:30 a.m. and 5:30 p.m. with mid-day PRN, so we know she will be getting it at least twice a day, even if she forgets to ask.

Given Mom's prognosis and dementia, there are no plans to perform extensive diagnostics to determine the specific cause of the pain. She is at the palliative care level, and knowing the cause won't change the treatment.

The hospice nurse and ALF staff have been incredibly responsive to my comments and concerns, despite the fact that they don't witness the same behaviors I do. When the nurse takes Mom's vitals, he surreptitiously moves and rotates her left arm and shoulder, and gets no complaints whatsoever. (Last Sunday, I rubbed some Aspercreme on her shoulder and she sounded like I was ripping her arm off.) Sometimes I wonder if the staff thinks that I am the one with dementia.

I intend to continue reporting Mom's complaints, because that's the only thing I know to do. I also appreciate getting their feedback, because it helps me worry less. When I talk to Mom, I worry about how fast she is progressing in her various diseases. When I talk to staff, I can sleep at night.

Again, thank you all for making me feel less paranoid about my paranoia.

Journey.
If you are willing, I would encourage you to talk to doctor/hospice about getting your mom a patch. The most common one is Fentanyl, but there are others.

This gives them a more constant dose of the pain medicine throughout the day, and as the condition worsens, if you think she is in more pain, they can increase the dosage of the patch, or add another one PRN.

the possibility of her upper arm/shoulder pain could be referred pain from the cancer inside her body, especially if it has metastasized to the liver.

I'm concerned that they are only willing to prescribe a 'small' dose of pain killers. Are they worried that she will become dependent? I mean come on! But this is an age old battle.

I had to do battle with several MD's as I took care of both of my grandmas as they were dying. One from metastatic Breast Cancer, and the other from a non-recoverable head injury from a fall in the shower.

I was glad I was a nurse and wouldn't let them bully me down and not listen to me.

I wish you all the best as you continue to care for your mom.

quote:

When the complaints about pain are just directed to the closest LO, doesn't it seem likely that it's partly a bid for attention?

No, I don't agree at all.

First, some people with dementia have delusional pain. Johanna C. has written about this. To them, it feels real and antipsychotics are the only way to address it.

Second, for us, I think it's far likelier that my mom sees me as her most trusted connection in the world, and counts on me to know how to fix everything under the sun, whereas she sees her daily CGs simply as helpers and doesn't feel any attachment to her docs at all.

Either way, I'm not going to play amateur psychologist with my mom's comfort by denying pain reports while I speculate about her motivation!

Since I know she doesn't communicate pain and discomfort consistently, we watch for non-verbal indications AND give pain meds routinely.

Oh boy, I am dealing with the same thing. Mom refuses/can not admit to pain. Last Fall when she crushed two vertebra, it took two trips to the ER and 5 days to determine that she was in severe pain, but did not even wince when she got up.

We have decided that Mom has a disconnect between pain and her ability to verbalize it. The only way we know that she is in pain is that she will say she needs to see someone - ususally about her teeth, not what is really wrong.

So consequently, Mom is on Tylenol every 6 hours. Does she need something stronger? Can't tell, but it is driving me nuts worrying that she is in pain.

Nonnie:

I had the same experience, after the fact, of learning that my mom had been telling the staff bad things about me. They too had been treating me coolly. Finally when she had been telling them that I had taken her from her home and that I was living in her home because I had always wanted it, she mentioned that her home was in the state of California. Someone finally realized that there was no way I could be living in my mom's house.

I agree that for many with dementia, there is real pain. It is quite often the case that they can't tell us when they are in pain.

I know with my mother, she is constantly telling me about pain, but that pain is usually not real, so to speak. I can tell when she is really in pain by the way she moves - and of course she won't tell me - I have to ask. I just came back from visiting her, I spend my time rubbing her hands, her feet, her arms, etc... She will show me different parts of her body to say they hurt because she wants me to massage - so I do. When anyone else walks in the room, my mother says she feels fine - has no pain.

We know our loved ones best, we have to monitor them constantly, and monitor their care.

Journey,
Sorry you are having the pain issue.
So hard to find out what is hurting them as alz pt. do not connect pain verbally at all. I can ask and 'no I don't hurt" but in next breath she is groaning and can't get comfortable. The pain patch that DSM mentioned is what he finally put her on after I insisted she have something for pain. Turns out she has compression fracture. Doc ask the hospice nurse if we planned on keeping her on the patch forever....I do if I think it improves the way she feels. She is on the tiniest patch I have ever seen so if that dose gives her relief so be it.
Have tried without and she become restless and less responsive so...I think she has pain. She is 80 and if she becomes a flaming drug addict I think I can live with it.
When she is not in pain I get glimpses of my mother a little more often than when she hurts.
Lots of company on this site isn't there
We are all in this together.
Sheryl

There are pain assessment checklists that pediatric healthcare people use with non-verbal and pre-verbal patients.

It's everything from elevated heart rate to body language.

If your ADLO's nurses and doctors aren't familiar with these, they should promptly educate themselves

quote:

Originally posted by Grassflower:
There are pain assessment checklists that pediatric healthcare people use with non-verbal and pre-verbal patients.

It's everything from elevated heart rate to body language.

If your ADLO's nurses and doctors aren't familiar with these, they should promptly educate themselves

This sounds like something that could be very useful to us as caregivers, too.

quote:

Originally posted by Cathy J. M.:

quote:

Originally posted by Grassflower:
There are pain assessment checklists that pediatric healthcare people use with non-verbal and pre-verbal patients.

It's everything from elevated heart rate to body language.

If your ADLO's nurses and doctors aren't familiar with these, they should promptly educate themselves

This sounds like something that could be very useful to us as caregivers, too.

No kidding! I was thinking that very same thing.

Journeywriter,
Your plate is certainly full, as your Mom's diagnoses are each individually significant, and collectively make the picture quite complex. Given her history of diabetes I wonder if some of her pain might be due to diabetic neuropathy? Hopefully the links I'm including will post completely...

http://diabetes.niddk.nih.gov/DM/pubs/neuropathies/

http://query.nytimes.com/gst/f...35A35752C1A9619C8B63

No matter what causes your Mom's pain, I think the suggestions by DSM14 and sheryl726 regarding patches for pain control, such as Fentanyl, are probably the best way to go. Patches are often prescribed for cancer patients - especially those for whom the disease has progressed and the prognosis is fairly limited. When my late husband's prognosis was less than 6 months (malignant brain tumor), his neurosurgeon had no difficulty letting him move from pills to patches to control his pain. Just be sure that the patch is applied to an inaccessible spot where your Mom won't be able to pick at the patch and remove it!