My mother has dementia and has some very vague pain that, at times, has her in tears. It comes and goes with no correlation to time of day or activity. She says it hurts all over. She's had every scan, ultrasound, and blood test done, all coming back normal. She gets bounced back and forth from her PCP to GI to Neuro, with no real solution. She's on Amitriptyline, Zoloft, Exelon patch, and lorazepam at night. Tylenol and Tramadol have no effect. I'm at my wit's end and just want her to be comfortable. I'm an RN and I feel like I'm failing her because a solution can't be found. Does anyone have any experience with a situation like this? I'm at a loss of what to do to help her.
She wears the same turquoise pj bottoms day after day because they are loose and comfortable yo her. With the lack of communication skills, it is very hard to determine is this real pain..or does she just want some attention.
She cries out about pain whenever we mover her. After watching her over and over, I found that she cries out in pain with noises, her body just lightly touching part of the Hoyer. Almost any outside stimulus causes her to cry about pain. She cries out in pain not so much due to pain but as a complaint about whatever stimulus she experiences.
Today, I asked the aide to push the diaper under my wife. She waited about 30 seconds to get the Velcro tabs covered but my wife cried out as soon as she picked up the diaper.
Afierce years of trying to get relief, finally my RA doc tested me for fibromyalgia. I have 16 positive markers out of 18. He prescribed Cymbalta. In 3 days the severe nerve pain in my leg was gone. The "touch neuropathy" in my arms, legs, back, neck is down to about a 2 or 3 on the pain scale.
The added benefit of Cymbalta is it is an anti depressant and I have found it very beneficial helping me deal with my husband's Dementia.
Can you have your mom assessed for fibromyalgia? Hugs to you
Also, I have simple arthritis everywhere from multiple car accidents. Because I am less tolerant of pain, I feel in pain ALL the time. It would be hard to believe that at your mom's age, she might also have some arthritis and maybe she's more sensitive to pain? If so, it's not in her head.
YOU are making the attempts to get to the bottom of the issue(s), so it isn't you who is failing. It is very difficult to determine what, if anything, is causing pain in those with dementia.
My mother suddenly started complaining a lot about leg/knee pain. I took her to the doc first, who just prescribed a lot of Extra Strength Tylenol AND ibuprofen. It really did nothing. I took her to the ER. During intake, she told the triage nurse there was nothing wrong. She stood and walked to the scale herself, despite refusing to walk before getting there. Of course then you look like an overprotective idiot! FOUR hours of moaning and crying, massaging her leg and complaining of pain later, we'd had a check for clots (negative) and not much else. I wasn't too happy they didn't do Xrays - most likely because she'd had then several months before (maybe 9 months?) They gave her something (not narcotic, I don't recall now what, but it wasn't much more than the Tylenol or ibuprofen.) They asked to see her use the bathroom, but she couldn't stand/walk unassisted (took 2 men to help her) and couldn't even stand long enough to let me help pull her pants back on. They discharged her anyway, despite inability to really do anything herself or resolve the pain issue.
One staff member was unhappy with me not pursuing this further, such as take her to a walk-in clinic. Without her records, with dementia and so forth, exactly what is that going to achieve? She really tried hard to make me feel less than helpful to my mother (Do you really like seeing her in pain? What a jerk!)
Anyway, I chose to take her to an orthopedic doctor. First appt was weeks away and I managed to get them to move it up some. It was still at least a week or more away and by then there were no more complaints of pain. I took her anyway, because I was aware of how many times before dementia she had said she needed to have her knees "done", but never pursued it (she lived alone, no real help from us, as she was doing fine.) Anyway, I told him all this (again, NO pain evident since those few days) and he ordered Xrays. On review he told me that were she 20 years younger (she was about 94 then), we'd be talking surgery. Her knees were basically bone on bone. The 20# she gained after moving to MC likely wasn't helping either! In addition, she preferred to sit and read the paper, magazines, sales flyers, so not a lot of active movement. She was still self-mobile at that point - no walker. I requested a cortisone shot, more as a preventative than anything. He agreed and mom initially balked at "needle", but didn't flinch or cry out when it was done. She's also one who would complain loudly about the BP cuff being painful.
Although she has indicated she "hurts all over", if you can get her sitting comfortably and then ask where does it hurt the most, the least, etc., maybe you can narrow it down. Sometimes if pain is intense enough, we tense up and that can make it seem like it hurts everywhere. Before I could finally get the right doctor to figure out my pain WAS a cervical disk (5+ YEARS!), I had to be very careful about what I did, how I would sit AND if pain started, catch it ASAP, otherwise I would be non-functional for hours or longer.
As an RN, I would guess you've had the UTI check done (preferably a culture) and blood work (to rule out an infection elsewhere.) If not, I would get these done to rule out any infection. When I first joined the forum, I was puzzled by all the UTI test suggestions.... until mom had her first UTI in MC. Oh boy! Another member ruled that out, but discovered an infection in the mouth caused her mother's odd behavior/changes. Once treated, all was good again!
Hope they find something, either a cause or a solution.
Has your mom had shingles? Sometimes that pain can return and actually may never go away and this drug is sometimes given for that. My husband was given it for neuropathy like pain in his foot. He just takes it at night when his foot hurts.
I was given it for a bad headache that was thought to be neuralgia. I didn’t get sleepy or dizzy. My husband said he rested better when on it. so it doesn’t affect everyone the same. Neither of us took it long term. Just as needed.
I would hope to never advise anyone not to feel. Your feelings are real and valuable. and coming here is helpful. So if your wits end brought you here, then your “wits are about you.”
Keep in touch, give us feedback and you will get more tailored answers.
Please read up on Polymyalgia Rheumatica. If you think it may fit, have the doctors screen her for it. Corticosteroids, specifically prednisone, can really help with that kind of pain. I know the typical protocol is to start a bit higher then taper down to see if the condition resolves. If that doesn't work, the next stage is to try cycling the steroids to prevent long-term side effects. But if doing that keeps a pt in a cycle of pain, not pain, pain, not pain, etc etc, you won't find that satisfactory.
I don't know your mom's type or stage of dementia or how much more time it's thought she has. But for an elder with chronic pain from PR, a continual low-dose protocol is a better solution to keep them functioning with less pain and a better quality of life for the time they have left.
As an RN, I know you already know what I'm talking about, and that you'll do your appropriate research. Best wishes...
I am caring for my mother Mom, who is 70 years old, living at home with alzheimer's / dementia.
I am writing from the patients point of view. When I read about the experiences you are having with your mother, it sounded very familiar to me. I complained about pain throughout my life. My mother was DON at a Catholic Skilled Nursing Facility for about 15 yrs. I saw number of different doctors Orthopods, Neurologists and my PCP. All of them said, they couldn't find any cause for pain. Going forward from childhood, until I was in early 40's. when I made an appointment at a nationally known Medical Center having an EMG and Nerve velocity test. The doctor doing the test was a Fellow who told me she'd be opening a practice in the town I lived in the near future. She wrote down my contact info and called me when she had details she could share with me regarding scheduling appointments. She's been my Neurologist going on 16 yrs.
She told me I was experiencing Neuropathy. I was prescribed Lyrica and I've been on it ever since. within two weeks, my pain level went from a 6-7 down to 2-3 which has been manageable. I've considered it a Golden Bullet in my life.
I was also told by her that I had a form of Muscular Dystrophy. These two pieces of medical diagnosis, have allowed me to enjoy life more than I thought I would.
I just wanted to share this story as it took two thirds of my life to get the diagnosis. I don't know if your mother underwent any tests for Neuropathy, if not, I think it might be worth walking down that path.
Psych drugs can prolong the QTc interval that leads to deadly dysthymias, torsades and death. She really needs to be monitored with more frequent EKGs. Unless she is on hospice, be aware of all the dangers of polypharmacy.
https://www.goodrx.com/aleve/side-effects
Aleve can also cause kidney damage
https://www.goodrx.com/blog/10-worst-medications-for-your-kidneys/#:~:text=NSAIDS%2C%20or%20nonsteroidal%20anti-inflammatory,because%20of%20their%20widespread%20use.
Aside from the primary doc we have a neurologist and palliative doctor.
Mom is on zoloft for depression, remeron for psychotic issues, remeron for sleep ( along with melatonin)..... along with tylenol 2-3 times a day.
It was only after she went on a very low dose of liquid methadone (twice a day) that the calm kicked in. Mom no longer complains of pain.
There’s an evenness to her life. She now sleeps at night, is less agitated and is pain free.
If you can, find a geriatric specialist in neurology and palliative care.
Elderly patients are unable to vocalize when they’re in pain. It may manifest itself as agitation.
The palliative doc explained that studies have proven a low daily dose for elderly frail patients has proven to be more successful than random pain medication that not only takes too long to work and is a higher dose.
I resisted the thought of so much medication but the results have proven the doctor spot on.
My heart goes out you you and Mom.
Sorry your mom is going through this . My dad find listening to gently music helpful when he is in physical distress . Hope you can find something to help give her a bit of relief .