Caregiver- how do I manage my mom’s pain when she doesn’t really communicate it?

[AdultChild1]

My mom had a stage 4 GBM tumor removed in May from her left frontal lobe (the area where communication and balance is) she has a second tumor on her right frontal lobe still. We are currently at my home through hospice.

Issue: She doesn’t always or doesn’t (it’s hard to tell) accurately communicate what is going on with her, which makes me worry about a lot of things, but in this case specifically what kind of pain she’s having-where exactly it is, how much pain she’s in, what kind, how regular it is, etc.- I/we try to ask questions that are sometimes too complex/have too much nuance, but it’s always in hindsight that we come up with a better way to ask, it’s a learning experience to say the least. It hasn’t been that much of an issue until last night. Mom told my sister she was having chest pains, I of course was like IS IT A HEART ATTACK in my head. My sister said mom told her it wasn’t heart burn. So I went through the list of questions I have to try to give good information to the nurses:

Checked her BP and Oxygen and she was good there.

Is it your heart? -no

Do you feel like you’re having a heart attack (assuming of course she would be able to recognize that)? -no

do you have a headache (maybe it was her blood pressure and I’m just an idiot)? -no

Point to the area that hurts -she points to her sternum

Are you sure it’s not a heart attack? -yes

Is it heartburn? -no

Is your heart racing? -no

Does it feel like it’s a muscle issue? -no

Does it feel like you pulled something? -no

Does it feel like you damaged cartilage or a rib? -no

Does it hurt when you breathe? -no

Do your lungs hurt? -no

Does it hurt when you cough? -no

Here’s where I messed up I think — “on a scale is 1 to 10, with 10 being the worst, how bad is your pain?” -10

Long story short, she could have just had gas and I gave her hydro for it 🤦‍♀️🤦‍♀️ because I didn’t think to ask that until after she got the meds. I don’t want her to be in pain, but I also want us to be able to spend conscious time together.

So how to do we manage her pain accurately? I ask when she grunts (sometimes she’s just trying to have a BM and sometimes I don’t know what it is going on), I know to check her BP, I know to pay attention to her hydration, I know to give her aspirin if I think she’s having a heart attack? I know she probably could always use an ibuprofen because of her arthritis, but what about the big stuff? Anyway, if anyone has dealt with this and has advice I would greatly appreciate it.

[Who-said-that]

How do you know she’s in pain?I have a glioblastoma grade 4 and it’s not been too painful up until now I’ve a foggy head

Seems like you’re managing really well you’ll know if she’s in pain carry on talking with her tell her she’s safe that you’re therewith her

tbTyoulove her

[AdultChild1 in reply to Who-said-that]

She grunts or grimaces, and can answer “yes and no” a lot of the time. Sometimes she will say more, but I worry that occasionally she is just responding by repeating what we have asked her. She doesn’t always grunt. She has arthritis and said she has RA pre-op, so I worry she’s in pain a lot due to that, not necessarily directly related to the tumor.

[Hast233]

Hi there, obviously it is horrible to see pr think a loved one is in pain. My father passed away from a G4 Glioblastoma a couple of months ago and I have to say I think you are probably right in thinking it is not related to the tumour as generally speaking, the side effects tend to be relatively painless apart for some occassional headaches which can be eased with meds or CBD. I am sure you are heightened in terms of looking out for signs of pain as I was but it could be to do with more the Arthritis as if she is unable to move much because of the tumour she may be getting sore from not moving enough. Just a thought, and I am sorry you have to go through this process. Everyone is different and I know of many people who continue to live long and healthy lives after diagnosis. Best, James