Senior confused about source of pain
April 29, 2022 3:25 PM Subscribe
My 90 year old grandmother, who lives with my parents, has been diagnosed with COVID. She is doing as well as can be, but is often either confused or mishears what's being said. I'm also struggling to help her identify what's hurting over the phone as she changes her mind about the source of her pain. How do you help a confused senior identify pain?
I asked my mom to test grandma for COVID after my dad had a positive home test, as grandma had said she was having chest pains (which seemed different enough from rib pain to warrant a test). My mom asked "what difference would it make," but eventually gave her the test, which was positive. My grandma is thankfully doing okay, and her only symptoms are sleepiness and pain in her chest.
The problem:
> Grandma is confused about what part of her body is hurting, and it changes over time; e.g. she decided that this strain of COVID must affect throats, so it's her throat and not her chest that's hurting. I've explained that she can't get change her mind about what's hurting based on being diagnosed, as being unable to accurately explain the issue can be a problem when we talk to her doctor. She agrees, but then says that's what she's decided for herself. I don't know if she genuinely can't tell where in her body the pain is located or is confusing cause and effect, or general Parkinson's/dementia confusion; e.g. I told her that if her ribs are hurting after a fall, she should take Advil to relieve muscle pain; she took some and felt better. Now, mom says grandma wants to take Advil "to keep up her health". She is now asking mom for Advil several times a day.
> My mom describes my grandma complaining about pain as "fantasizing" or "imagining." I always push back and say it's a symptom of her dementia, but mom thinks that the more grandma talks about it, the more she will focus on it. At the same time, my grandma's world is very small right now, and she gets stuck on an issue that's not actually an issue for months, and keep talking about it. My mom is her daughter and the primary caregiver, and gets tired of hearing the same thing over and over. Grandma's fixation on things that doctors have confirmed are not an issue makes it hard to distinguish what's real and what's isn't.
> My mom obviously has a history of minimizing and dismissing pain. This is triggering as she'd done the same to me for years.
Background:
Grandma was diagnosed with Parkinson's and cerebral small vessel disease three years ago. For the past 5-6 years, I've been her medical advocate, making appointments, ensure she's taking the right meds, getting specialist referrals, etc. I don't live with my parents, so I have to coordinate with them and with her; I visit about once a month. Gran had a fall about two weeks ago, and I was told the day after. My mom insisted nothing was hurting (although later she amended that to "she'd jump if I touched her ribs, but was not reacting after when being washed"). After another family member pushed , my mom asked me to book an x-ray, which showed no broken bones. Grandma later said she was having pain in her side, but later said it was her coccyx. If I or my mom try to clarify what exactly hurts, gran says "I'm not sure what the body part is called."
I've previously gotten news about my grandma's falls, including falls that have left her in pain, a day or more after, and have either taken time off to take her to the hospital or insisted my mom do this. I've asked my mom for years to call me as soon as something happens, and she still doesn't. The only was I can manage is to neutrally discuss grandma's fall and how she's feelings, and then figure out if she needs to go to the hospital. One time, my grandma fell and fractured her L4 and L5; I had to take her to the hospital while my mom was insisting nothing could be wrong because she'd used a TENS machine and my grandma could feel her legs. This is triggering, as well as makes me worry for grandma.
Next steps:
> I have a phone appointment with her family doctor in a few days and will confirm there are no fractures on the x-ray; I will also ask for a urinary test as the confusion may be due to a UTI. I don't have a lot of faith in my grandmother's family doctor, as she's in her 30s and completely missed my grandma exhibiting signs of Parkinson's that a geriatrician picked up on right away.
> My grandma has geriatrician and neurologist appointments within the next two months.
I asked my mom to test grandma for COVID after my dad had a positive home test, as grandma had said she was having chest pains (which seemed different enough from rib pain to warrant a test). My mom asked "what difference would it make," but eventually gave her the test, which was positive. My grandma is thankfully doing okay, and her only symptoms are sleepiness and pain in her chest.
The problem:
> Grandma is confused about what part of her body is hurting, and it changes over time; e.g. she decided that this strain of COVID must affect throats, so it's her throat and not her chest that's hurting. I've explained that she can't get change her mind about what's hurting based on being diagnosed, as being unable to accurately explain the issue can be a problem when we talk to her doctor. She agrees, but then says that's what she's decided for herself. I don't know if she genuinely can't tell where in her body the pain is located or is confusing cause and effect, or general Parkinson's/dementia confusion; e.g. I told her that if her ribs are hurting after a fall, she should take Advil to relieve muscle pain; she took some and felt better. Now, mom says grandma wants to take Advil "to keep up her health". She is now asking mom for Advil several times a day.
> My mom describes my grandma complaining about pain as "fantasizing" or "imagining." I always push back and say it's a symptom of her dementia, but mom thinks that the more grandma talks about it, the more she will focus on it. At the same time, my grandma's world is very small right now, and she gets stuck on an issue that's not actually an issue for months, and keep talking about it. My mom is her daughter and the primary caregiver, and gets tired of hearing the same thing over and over. Grandma's fixation on things that doctors have confirmed are not an issue makes it hard to distinguish what's real and what's isn't.
> My mom obviously has a history of minimizing and dismissing pain. This is triggering as she'd done the same to me for years.
Background:
Grandma was diagnosed with Parkinson's and cerebral small vessel disease three years ago. For the past 5-6 years, I've been her medical advocate, making appointments, ensure she's taking the right meds, getting specialist referrals, etc. I don't live with my parents, so I have to coordinate with them and with her; I visit about once a month. Gran had a fall about two weeks ago, and I was told the day after. My mom insisted nothing was hurting (although later she amended that to "she'd jump if I touched her ribs, but was not reacting after when being washed"). After another family member pushed , my mom asked me to book an x-ray, which showed no broken bones. Grandma later said she was having pain in her side, but later said it was her coccyx. If I or my mom try to clarify what exactly hurts, gran says "I'm not sure what the body part is called."
I've previously gotten news about my grandma's falls, including falls that have left her in pain, a day or more after, and have either taken time off to take her to the hospital or insisted my mom do this. I've asked my mom for years to call me as soon as something happens, and she still doesn't. The only was I can manage is to neutrally discuss grandma's fall and how she's feelings, and then figure out if she needs to go to the hospital. One time, my grandma fell and fractured her L4 and L5; I had to take her to the hospital while my mom was insisting nothing could be wrong because she'd used a TENS machine and my grandma could feel her legs. This is triggering, as well as makes me worry for grandma.
Next steps:
> I have a phone appointment with her family doctor in a few days and will confirm there are no fractures on the x-ray; I will also ask for a urinary test as the confusion may be due to a UTI. I don't have a lot of faith in my grandmother's family doctor, as she's in her 30s and completely missed my grandma exhibiting signs of Parkinson's that a geriatrician picked up on right away.
> My grandma has geriatrician and neurologist appointments within the next two months.
This sounds stressful! I'm not a medical doctor but have done a lot of public health work for COVID. The real danger for elderly people is hypoxia (low oxygen) caused by pneumonia- this can manifest as confusion or shortness of breath. You might want to get a pulse oximeter for your grandmother (clamps on your finger and measures oxygen levels), this might be a more useful way to assess her health rather than asking about pain. If O2 levels get low you can try to call for a telehealth assessment or take her to urgent care/ER if needed. Best wishes to you both!
posted by emd3737 at 4:18 PM on April 29, 2022 [7 favorites]
posted by emd3737 at 4:18 PM on April 29, 2022 [7 favorites]
This may not be a popular opinion, but...
You have personal experience of your mother minimizing your own pain and other health issues. You are describe a situation with your grandmother in which your mother was minimizing or invalidating your grandmother's health issues. That suggests to me that it is well within reason for you to be concerned about your grandmother's wellbeing while in your mother's care, because this "minimizing" is actually a code word for neglect.
WHY your mother does it isn't really the issue; it's the fact that she's known to have this pattern of behavior that's the issue. Your grandmother is not able to effectively advocate for herself, even to you. Your mother is either not willing or not capable of being an effective advocate. I suspect this is why the task has landed on your shoulders. However: if you're only able to see your grandmother in person once a month, and she has deteriorated, for whatever reason, that she is not able to let you know when she needs help, there needs to be someone that sees her IN PERSON for regular contact with her much more frequently.
Who and what circumstances that needs to be, that may vary. But I urge you to do something. This situation is potentially very dangerous for your grandmother.
Contact elderly & disabled services in the area in which your grandmother lives, I strongly suggest you contact them and ask for advice. Not necessarily to report neglect, if you aren't certain it has reached that level, but to ask for help in preventing it from reaching that point. There should be some sort of resources they can point you toward; it should be similar or the same as the resources that they would offer your mother, should she reach out to them for help.
Be aware that, depending on how things go, your mother may not be a competent or capable caregiver for your grandmother, and consider what steps you may wish to take if that becomes the case.
posted by stormyteal at 6:20 PM on April 29, 2022 [2 favorites]
You have personal experience of your mother minimizing your own pain and other health issues. You are describe a situation with your grandmother in which your mother was minimizing or invalidating your grandmother's health issues. That suggests to me that it is well within reason for you to be concerned about your grandmother's wellbeing while in your mother's care, because this "minimizing" is actually a code word for neglect.
WHY your mother does it isn't really the issue; it's the fact that she's known to have this pattern of behavior that's the issue. Your grandmother is not able to effectively advocate for herself, even to you. Your mother is either not willing or not capable of being an effective advocate. I suspect this is why the task has landed on your shoulders. However: if you're only able to see your grandmother in person once a month, and she has deteriorated, for whatever reason, that she is not able to let you know when she needs help, there needs to be someone that sees her IN PERSON for regular contact with her much more frequently.
Who and what circumstances that needs to be, that may vary. But I urge you to do something. This situation is potentially very dangerous for your grandmother.
Contact elderly & disabled services in the area in which your grandmother lives, I strongly suggest you contact them and ask for advice. Not necessarily to report neglect, if you aren't certain it has reached that level, but to ask for help in preventing it from reaching that point. There should be some sort of resources they can point you toward; it should be similar or the same as the resources that they would offer your mother, should she reach out to them for help.
Be aware that, depending on how things go, your mother may not be a competent or capable caregiver for your grandmother, and consider what steps you may wish to take if that becomes the case.
posted by stormyteal at 6:20 PM on April 29, 2022 [2 favorites]
I'd get her checked for a UTI. It can be difficult for seniors to identify the symptoms, as it can cause disorientation as well as pain in older folks.
posted by ananci at 4:43 AM on April 30, 2022
posted by ananci at 4:43 AM on April 30, 2022
There's a long term and a short term problem here. Short term, Grandma has covid. She might be a good candidate for antivirals if it's not too late. If you can get her doctor on the phone earlier, I would highly encourage you to do so.
posted by twelve cent archie at 6:28 AM on April 30, 2022 [3 favorites]
posted by twelve cent archie at 6:28 AM on April 30, 2022 [3 favorites]
Absolutely yes try to get her on COVID antivirals, good suggestion 12 cent.
posted by emd3737 at 7:57 AM on April 30, 2022
posted by emd3737 at 7:57 AM on April 30, 2022
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One thing that helped us a bit was to get Grandma set up with an iPad so we could facetime her instead of using the phone. Her comprehension is better when she can see our faces and it allows her to point and gesture and make faces as well as using her words. My computer literate husband set up some scripts so she can just push a button (photo of the person) to inititate a FaceTime call with family members. It is also set to auto answer calls from people in her contact list so she doesn't have to rush and figure out how to accept an incoming call. Also, all of the apps that she wouldn't be using on her own got pushed off of the home screen so she is less likely to accidentally press the wrong thing.
Second, I am wondering if given her situation there is access to a home health nurse that could maybe visit her in the home and check up on her on some kind of regular schedule. We got this service as part of pallative care after a major, major hospitalization (lasted 6-12 months) and again for shorter periods of time where there were active problems. Ask both the family doctor and the geriatrician. If the doctor's office has a messaging system, you might reach out the geriatrician sooner than her next appointment.
Third, does she have hearing aids? If she does, it would be a good idea to get her hearing rechecked. Hearing problems can contribute to confusion and social isolation. If she doesn't, it may be an uphill battle to get support for the hearing check, the cost of the hearing aids and the assistance of your family to make sure that they are in her ears and get recharged or batteries replaced as needed. But it is worth considering.
posted by metahawk at 4:07 PM on April 29, 2022 [9 favorites]