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My grandmother is 86-years old. She lives in a skilled nursing facility. Her health history includes very common pain inducing conditions combined, mainly:


trigeminal neuralgia
fibromyalgia
vascular dementia (which has made her a total care patient)
stroke (has resulted in left arm contracture and weakness)
arthritis (especially in the fingers)


After a UTI she was transferred to a nursing facility and placed on hospice.


She did not report trigeminal neuralgia/fibromyalgia-related pain in the months before she stopped communicating, nor did she complain of pain from the other conditions. The only pain she complained of was from a previous fracture in her left shoulder due to a fall. As mentioned before, that entire side has atrophied and weakened after a series of strokes, which have also contributed to her dementia.


She had always been reluctant to disclose pain or discomfort, but in recent weeks she has ceased verbal communication, including any vocalizations (such as groaning) that could indicate discomfort. She displays mostly flat affect, verbally, emotionally and physically, even in situations that used to cause her to express discomfort in some way (such as through a vocalization or grimace). Her lucidity is unclear, but it seems that she drifts in-and-out of alertness and a half-dozing state, but due to her lack of communication, it’s also unclear if this is delirium or disease progression.


Until about 3-4 weeks ago, it was uncommon for her to go multiple days without speaking. But for the last 2 weeks, she has not spoken a word and seems out of it.


Within the last two weeks, she has begun to sleep more throughout the day and wakes intermittently at night despite sleep hygiene practices, daily activities and regular visitation by family, and frequent exposure to sunlight. She spends much of the day sleeping and is nearly impossible to arouse. This pattern was first noticed on 9/28 and she began taking Tylenol the next day. Her current dosage is about 1300 mgs a day.


The only means she communicates any form of pain/discomfort is through furrowing her brow, widening her eyes, slight grimace, closing her eyes (uncommon, but sometimes after being turned/repositioned), and sharp withdrawal of her left foot. Her foot jerks intermittently throughout the day and sometimes wakes her at night. She flinches if touched there. It’s unclear if these responses are due to pain, anxiety/surprise, or due to some other cause. Her left calf is really tight despite stretching.


The hospice and facility doctor don't visit often enough to understand her pain issues. I think it's some kind of neuropathic pain, but I'm not a medical professional. They agreed to put her on Gabapentin, but it's possible that they're doing it just to pacify me considering how often I alert them to her issues.


Based on her previous behavior while being changed, repositioned, and transferred from her Geri chair to bed and vice versa, it’s quite possible that pain proceeds from such activities of daily living. However, due to a lack of visual pain response, it is challenging to tell if she is in discomfort or not. The family has attempted non-pharmacological interventions (warm massage, passive mobility exercises). As the focus is palliative care (reducing the pain/emotional symptoms associated with any health complications, including treating them if need be), the family is seeking further safe solutions for unreported or unnoticed pain responses and depression, as it is unclear if her withdrawal and flat affect/response is due to disease progression or pain/depression.


The family tried Zoloft to stave off depression, but the drug left her sedated. Thus, the family is considering giving her 5 mgs of Lexapro at night to avoid circadian disruptions while addressing any underlying depression/anxiety. When cognizant, she was not one to express sadness. So I’m really not sure if she’s depressed, delirious, or just succumbing to the inevitable progress of vascular dementia.


Unfortunately, the hospice and nursing home haven’t been much help in identifying what (if anything) is abnormal, be it delirium, depression, side effects of Tylenol, post-stroke central neuropathy, etc. I’m working on finding alternative opinions for her care so she can be comfortable.


In the meantime, does anyone have any experience in caring for someone like my grandmother, someone who’s always been really stoic? What have been your experiences in distinguishing between and treating pain (especially nerve pain), depression/anxiety, and delirium?


Thank you so much.

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@SueC1957

I'll definitely bring that up. It seems like Tramadol or oxycodone would be the most logical next step in this scenario.

Thanks for the input. 
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Since your grandmother has a history of trigeminal neuralgia, fibromyalgia,
stroke (left arm contracture/ weakness) and arthritis (especially in the fingers), it wouldn't seem as though Tylenol would be very effective. It works pretty well as a fever reducer but, in my experience, doesn't do much for anything except mild pain.

I agree with Tramadol a couple of times a day. It doesn't "snow" you but does provide pretty good pain relief. (I take it occasionally for arthritic neck pain.)

Even if you can't tell if she has pain or not, it won't hurt to err on the comfort side, for her sake.
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@Grapeauto522

She was put onto Tylenol twice daily for 2 weeks and then increased to 3 times a day as needed. I wasn't sure if Tylenol would cause sedation like that.
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Has her pain meds been changed lately? When my husband took certain ones, he became almost like a zombie. He slept all day. He would mostly be out of it. I had a talk with doctors and was able to get him off of some of them. And he became a person again. Check it out.
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Just tried taking her "resting" pulse and I got it (assuming she wasn't in any activity/movement related pain at the time). 88 beats/ per minute. I'll see if I can compare it to when we reposition her. 
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VaDcarer1,
You can buy an electronic blood pressure cuff that will read the blood pressure and the pulse at the same time ($35.-$70.). Just slip it on her arm and press a button.

If that might be too costly, buy a pulse oximeter at any pharmacy (around $20.). It will give you the pulse and oxygen saturation rate (how much oxygen is making it through the body) together.

If neither of those are options, use your index and middle fingers and locate the radial artery at the inside of the wrist, just under the thumb joint. It's about 1/2" below the round ball, under what feel like tendons. Do not use your thumb, as you could be feeling your own pulse. You need a watch or clock with a second hand. Count for a full minute the "thumps" you feel. That will be her heart rate. It could be anywhere from 60 to 100. The higher the number, the more possible pain she's having.

You can "Google" How to take a pulse at the wrist. They have a picture of proper finger placement. Sorry, I couldn't copy it.
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@BarbBrooklyn That's sad to hear. Hope she's feeling better on the Tramadol. I'll ask the doctor about it.

@Veronica91 I've looked up how to check her pulse but don't think I did it properly. I'll definitely ask the Dr about more options for pain management.
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A rapid pulse will also indicate pain. Given that she has some conditions which usualy produce significant pain, I would want to treat it. See if the Dr will prescribe a trial of a narcotic and see if this appears to help.
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VaD, my mom has vascular dementia and was partially aphasia from a stroke. If asked by staff " are you in pain" she would say or indicate " no", but when we visited, she was writhing, weeping, shaking her head yes. Oy.

We finally settled on Dr ordering a regular dose of Tramadol twice a day, with a prn dose if she seemed to need it.
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I'll convene with hospice and make sure we figure something out. Yes, family members are with her nearly 24/7.
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You can tell a person is in pain by their BP readings. Hospice is suppose to do whatever they can to make her comfortable. Surprised that u know what happens to her 24/7. Do family members stay with her around the clock.
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Thank you for the responses.

@cwillie: I'll definitely look into that. I would be comfortable doing so as my goal for her is comfort. I don't want to do it unnecessarily.

@Shane1124: We've given her Tylenol, but it doesn't seem like it's working. So, I'm not sure exactly what's going on with her but don't want to overmedicate. But yes, absolutely want to treat any pain.

It is much more reflex than purposeful, in my understanding.

Thank you for your wishes.
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Are you debating whether to treat her for pain but are not sure she is indeed having pain to treat?
Do you feel that many of her movements now are more reflex - like vs purposeful?
It appears you all have been providing effective comfort measures. Gabapentin is supposedly very good for relieving nerve pain from what my diabetic patients tell me (RN here). I would give it a try.
It's very hard deciphering whether someone is in pain when they can't tell you themselves. If it were my mother I would try anything; a small dose, even a narcotic. I would be satisfied that I was trying to alleviate any pain she may have, especially if she is in Hospice. My mom too was unresponsive although at the end she had a lot of random, reflex like movements. If she got more restless, the nurse gave her medication that calmed her down but did not knock her out (totally). I couldn't know for sure that she was in pain, but I could help provide relief from pain to the best of my ability by allowing hospice to do their job and keep my mother comfortable.
I wish you and your family peace during this difficult time.
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Go to you tube (or google it) and watch videos part one and two:
Late Stages of Alzheimer's: How to Recognize Pain with Teepa Snow

Would you be comfortable taking the next step and introducing narcotics?
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