My 78 year-old mom had a hip replacement nearly 3 months ago. She has consistently complained of pain all over her body since then. The Geriatric Psychiatrist says that she may still be uncomfortable from the operation but the pain is mostly in her head (caused by the dementia). When I tell her to ask the nursing sister in her frail care to give her pain meds, she refuses saying it’s not that bad ….. but minutes earlier told me she’s in terrible pain.
She complains every single time I see her (3-4 times a week) and I’m not sure how to deal with it. I’d feel terrible if she really was in real pain but the specialist says she’s not. Is this normal for a dementia patient?
Unless the nurse or the doctor can prove to your satisfaction that Mom isn't in pain in spite of what she says, I'd be giving them the what-for about neglecting and dehumanizing their patient.
My mom always had "creaky knees" as she put it, and never hesitated to take aspirin when she was in pain. As her dementia progressed, I noticed she no longer complained of pain, even when she developed gout, which was clearly excruciating. She couldn't express herself well enough to state she was in pain, but if you bumped her hand or elbow where the gout was, she justifiably screamed in pain. Her nitwit doctor doubted she had gout in spite of all the indicators, and it took two weeks of her hospice nurse and me harassing him to get her the proper medication for it.
You need to be your mother's advocate. If she says she's in pain and you believe her, that's enough. Keep demanding they take her claims seriously.
1 - Divert her attention to something else: another topic, another activity, a treat
2 - If she seems comfortable, she is comfortable.
3 - If she seems tense, heart rate elevated, respiration elevated - it could be anxiety, try calming methods. If calming doesn't work, then a mild pain reliever may help.
4 - Try non-medication methods to help with pain. Sometimes warmth helps. Sometimes cool works, Sometimes massage works.
My mother had one days-long bout with leg pain. Moaning, carrying on, bent over in the chair rubbing her leg. Was it real? To her, sure. Just like the odd things they say, do, remember. One staff member really irked me - she was telling me to take her to a clinic, implying I'd rather see my mother in pain. This was after 1) seeing her PCP and 2) spending FOUR+ hours at the ER listening to this the whole time!!! A clinic wouldn't do anything even remotely for her - they have no records, she can't identify the pain, etc. What was rather telling was the intake (triage) at the ER. Mom was in a transport chair. She was asked questions about the pain, and she said she didn't have any pain! She would NOT walk for us (staff and me), yet when they wanted her weight, she got right up and walked to the scale! After she was in a bed, non stop moaning, wailing, etc. for 4+ hours. After we got back and beyond, not another word. Nothing. I took her to an ortho later, just because I wanted to rule out any real pain.
I do suspect her knee(s) was/were the source of the discomfort, because she had, for years, said she should get her knees "done", but never did it. In the end I took her to an Orthopedic doc. This was well past those few days of "agony" she exhibited. After X-rays, he said she was bone-on-bone, and if she were 20 years younger, we'd be talking surgery. I asked about an injection (corticosteroid), just in case. We did that and I never heard another pain session (either in person or from staff.)
So, could it be real? It isn't likely from the hip, although there could be pain from it still and she can't really "localize" it. It would be key to find out from staff if she's exhibiting any signs of pain or verbalizing pain. If she isn't when you aren't there, it just might be phantom pain or attention seeking.
When the doctor comes by to see her weekly, and mother cannot tell her what kind of pain she's experiencing, then it's hard for the doctor to put much credence in this pain. Plain and simple. Dementia creates a lot of confabulation situations where nobody can tell the bull from the crap.
My motto is this: when a person is refusing pain meds, the pain ain't so bad. Because I know for myself, when the pain is bad enough, I TAKE THE PAIN MEDS. Period.
So yes, it's normal for a dementia patient to be complaining about phantom pains all the time, and having no conclusive evidence of the pain being real. If your mother is refusing pain meds, I wouldn't worry too much about it.
I've been dealing with performances from my mother for years. Complaining continually about her health and pain and everything else from soup to nuts. Then is fit as a fiddle the minute the doctor walks in. So, I tell him loud and clear in front of her that she's in so much pain she thinks she's going to die. I simply relay to him what she says to me all the time. She doesn't complain that much to me anymore because I embarrassed her with her doctors by calling her out.
You should do the same. When your mother starts up to you about how terrible her pain is and how badly she's suffering, go and get the nurse. Then say to the nurse, in front of your mother so she hears, exactly what she said to you.
Or when she's starting up a performance for you, shut it down right away. Tell her if she refuses medication there's nothing that can be done for her and you don't want to hear it. If she doesn't get the response from you that she wants, she will stop.
If her dementia means that she has no short term memory then she's unlikely to have the autonomy to request pain meds. Additionally, with her short term memory short circuited, she may be recalling that she had an operation (can't identify that it wasn't recently) and that she did have pain, but she's 'lost' in time and doesn't realise that the pain was not recent.
What you could do to rest your mind is to have her receive a dose of pain meds if she's complaining of discomfort during a visit and then see if the pain resolves. That might narrow it down.
You need to be your moms advocate and make sure that her pain is being treated properly, and if necessary each time you visit, you can give her some Tylenol or ibuprofen, that you bring in yourself.
My husband who had vascular dementia lived in a lot of pain, and at times it was unbearable for him. I never once thought he was faking it, as I could tell by his facial expressions that he was not, and he was treated accordingly.
I wish you well in getting moms pain under control.
That doesn't mean though that there isn't residual pain, or that ancillary body parts aren't affected.
Weather is also a factor. Back in the mid 2000s, I had a few minor incidents with meniscus tears in both knees, and torn rotator cuffs. I decided not to have surgery for any, but got PT and continued after it was over, working out at home.
I don't feel any residual discomfort unless the weather changes, especially when it becomes cold and rainy. Then, one by one, I'm reminded of those old injuries. We are in fact influenced by weather (SendHelp could probably elaborate on this).
I also support your mother's determination not to take meds for her pain, especially if it's "not that bad." Attention diversion is I think a better response.
In addition, old age factors in. Has your mother been diagnosed with osteoporosis?
Does she complain to her caregivers when you are not present? Will she accept a pain relief tab from them, if she does complain? This is helpful to know.
I would try bringing in a special treat that you know she will love, tell her it is a new pain relief medicine and you have had grand results and brought her one so she could be pain free for the entire day. Then let her enjoy it while you carry on about the benefits it offers and how happy she will be pain free. I would say a weekly regiment of 3 times and it will leave her completely pain free in a couple of weeks. Isn't technology wonderful!
If it's in her head, you have to try to redirect her head.
Use something that is entertaining for you, yummy for her and something you can bring every time. Get the facility aides in on it to ensure someone doesn't let the cat out. Psychosomatic pain is still pain, it's the brain mis-signaling and can't be pinpointed but, she is feeling pain, if this is what is happening. Trying something off the wall can help you to understand if it is real or psychosomatic.
I found that having a plan of activities for my visits were always tremendously helpful. In this situation I would try; 1st thing my beautiful momma, we are going to enjoy this amazing, delicious new pain treatment. Next we are going for a stroll, even if you push her in a wheelchair, outsite to see the beautiful flowers, sky, wind, clouds, air, whatever. We will even sit out there and enjoy just breathing and chatting for a bit. Then we will just go greet other residents and ask them how they are, we will be sure to introduce ourselves and get their names. Then we will go wash our hands and face, because it feels so good. Now we can play catch with a plush stuffed animal, that gets her moving and focused, it can bring lots of laughter and joy to her and you.
If she doesn't have a special something that she holds and cherishes, I recommend getting her something. We did a baby doll for my granny and she loved her girl and it gave her something to focus on besides herself. We would buy little outfits at thrift stores and make a big to do over cleaning her baby, changing her clothes to the gift she just received. It was amazing how much easier visits were when she got to tell us about the baby. Oh, we would tuck her in for her nap before we headed out, if not, that was okay to but, remember to introduce the baby when greeting other residence.
Sorry this was a book but, I read in your words that you are struggling with this new reality and just wanted to share how I overcame my difficulties seeing my granny become a child with no reality in my world.
You got this, just keep loving her and finding ways that bring her happiness and laughter in the moment. One good thing about dementia, you can do the same thing every single visit and she won't know. This helps you perfect what to do that makes her happy and you too.
In OP's case, I don't think her mom is quite "child-like" yet, she was just noting how it's like a parent-child role reversal. If she hasn't regressed that far, we have to be careful about how we "treat" them. She may resent being "treated like a child."
"Does she complain to her caregivers when you are not present? Will she accept a pain relief tab from them, if she does complain? This is helpful to know."
These questions ARE important. What we see when we visit might be worlds apart from what actually goes on when we aren't there! I've read so many comments regarding an elder who moans and complains, nothing to do here, they treat me bad, they don't feed me, etc etc, yet staff reports they are having a ball during activities when the adult child isn't there! If the staff does report she's not complaining and is having a good time with others, try to sneak in at times when you can observe without being seen by her, to see for yourself.
i don’t think it’s normal for a dementia person. i think it’s completely unrelated to dementia.
hard to know if your mother is really feeling pain, or just wants to be negative/complain.
3 months after operation—there shouldn’t be pain, unless the operation was done in a wrong way.
even 1 month later, the pain should pretty much be gone. i know 2 elderly people with hip replacement.
also, the pain shouldn’t be all over the body. should be related to hip.
hugs. either your mother really feels pain, or not.
i hope things get solved well! hug :).
Complaining is often a type of entertainment for the elderly.