I don’t know where to start really. Mom has had headaches for months now. But nearly 2 weeks ago they became really bad. Her back pain also increased. Lots of nausea She does not have a UTI! Because she can still speak & walk very little with a walker she doesn’t qualify for Hospice. She’s on their Pallative & Dementia Care. Mom maybe eats an ounce of food a day & drinks little. She’s a bag of bones. Her BMI is 15. Shes sleeping 98% now. Her eyes look different. Her communication and understanding is worse. She’s fallen a few times. She’s been put on Tramadol, a steroid, pain patch & nausea med. Nothing has alleviated her headaches. I've been going round and round with Pallative Care nurse and her dr (took her in last week). Her dr said well she had a brain scan a couple of years ago-seriously? I told him so did my SIL who passed away last year from Glioblastoma. Things change! So supposedly he’s ordered one, hasn’t been scheduled. Here are some of the many things the nurse has told me: dementia pts don’t have headaches, I’m not trying hard enough to get her to eat, steroids don’t cause headaches, she even accused me of demanding she prescribe Fioricet for my mom, so many other things. I asked her if mom could get something stronger like Fioricet. She declined. She said she didn’t have a diagnosis to support that!!! I sent her the chart notes where unspecified headache is listed, still no! I truly feel like I’m failing my mom. I’m fighting so hard but getting no where. Her labs came back with lots of abnormal results. I researched to see what the common factor was and it mostly comes back to kidney failure. Nurse dismissed this too. I’m going to get a specimen cup today and take her urine back to dr for further testing. I don’t want to take mom to the ER. I’d have to call 911 because she couldn’t sit and wait. What do I do?????? I sit and cry because I’m failing her, we truly think she’s dying but nurse doesn’t think so.
You are not on an easy road. I have traveled it both with my mom and with clients of the in-home elder care agency I founded. But you must find the energy to advocate for both your mom and you.
Sincere best regards.
I just recently took my mom to the ER. I called the ER first, no cases of the corona virus. She had her work up, IV therapy, and observation for the night. I was able to stay with her. I had prior authorization before I even stepped into the door. I would consider a new doctor and you may need to change nurses as well . I hope your mother gets the help she needs. The hospital followed strict guidelines and I felt safe. Your mother should not be in so much pain. I hope and pray your mother feels better and is pain free.
(And from my web search Fioricet in America doesn't even have codeine in it, so what is that nurse's problem?)
I would suggest moving from palliative care to hospice now. You describe someone no longer eating, and sleeping much of the time, someone who is very very debilitated and in pain. Mom will be out of pain when hospice gets there. Will that hasten her death? I have to say it will in all probability do so, but not by more than a month of two of acute suffering.
My heart breaks for you all.
you are doing fine and you will get her what she needs.
IMHO: Call 911 and get her to ER!
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