Mom’s health-I’m numb from the hell we are going through. What do I do?
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.
43 Answers
Popular Questions
Related Questions
- Was your LO under palliative care before hospice care while in AL facility?
- I want to set up a palliative care evaluation for my mother, how do I go about doing that?
- My 84-year old mother with dementia and PAD sleeps most of the day; confused; immobile; is drowsiness related to low oxygen level?
- My husband's doctor has listed his care as palliative. What is the significance of this?
My aunt with alzheimers complained of terrible headache every single day for over a year. Hurting to the point of needing to get into a dark room and avoid lights. She had a history of migraines, so why would we not believe she still had them. She was constantly rubbing above her eyes/forehead. I asked her what the headache felt like and she said it just pounds all the time and if she could put her finger inside there, it might feel better if she could rub where the pain was.
As for kidney failure, just recently had that issue in my family. What I found out was that you can actually have lost up to 90% of kidney function before you realize you are really sick. The relative was in severe pain but no one really associated it to kidneys - by the time he went to hospital he in kidney failure and an inadequate hosptal held him nearly a week trying to treat infection instead of the kidneys. By the time he was sent to a 'real' hospital with specialist dr and dialysis equipment, it was really too late. He was put on 24 hr dialysis and a few days later he passed. If her labs came back with abnormalities, then you need to have a talk with doctor to ask what caused them and what will be done about it. If you decide to go the ER route, call an ambulance so she doesn't have to sit outside in a car waiting her turn or in a lobby. Ambulance riders get to go right back to the treatment room. And call her doctor when you're on your way so he knows she'll be there. Maybe that will get the ball rolling to pinpoint problem and get her meds she needs. -- Do what you have to to advocate on her behalf because no one else will do it.
Could new medications cause her headaches? Is there any food that your Mom really likes? My Mom always has room for ice cream.
Broth or Gatorade may also be helpful.
I know that you're frustrated, and well should be, but sounds like your trying as best you can to help your Mom.
Best wishes to you and take care of yourself.
Sometimes there are also Visiting Physicians. Or Visiting nurse may have a hospice program...
You are not failing her you are doing the best you can. So stop crying and start researching...you'll find a better answer...
You may ask for them to give her Meniere's disease meds ( meclizine 12.5mg) to keep the nausea down and feed her mushy brown rice in homemade chicken soup with steamed cabbage and celery.... save the watery cabbage/celery "soup" and let her drink that-- brown rice soaks up poison and the body expels it. Ginger tea is good for kidneys. Rhubarb and honey with raisins will break up any collecting gunk in the colon. If you can find murdock ( wild rhubarb,,, burdock) add a small amount since it will operate like strong laxative and cause cramps if too much of the stem is used... good luck, God bless.
And, the responses about Tramadol are true. When I took it the night of 5-toe surgery, I had a seizure. That was the early release of Tramadol and the pharmacist said there was no mention of it causing seizures in her files. I had headaches. I took it for 3 days, not all day, but just once a day and tylenol the rest. About 10 years later, it came out Tramadol causes seizures. Partner Tramadol with oxycodone, and you have drunken fall risk. During his last 2 months of life in a care facility, my husband fell 3 x and injured himself twice--once broken vertebrae for he was prescribed physical therapy but was not watched, so he didn't do PT as prescribed--therapist couldn't get him to perform, he was sleepy; 3rd time he fell he broke the bone just under the eye not the cheek bone, fell and hit the ceramic floor in front of the toilet. My husband's were both caused most likely strokes. No medical report says that, but HOSPICE stated that. He stood in place, couldn't move, and just killed over from the feet to the floor, over 6 ft, hitting hard the ceramic tile with his face.
I'm saying all this so you have an idea how falls can result in injuries, can be from strokes, even though my husband was able to crawl to the bed where he was found on the floor. Drowsy and incoherent. For 4 years before he had these accidents and in Alz care, he got up in the morning, went to the recliner, stayed there all day, sound asleep, went to bed around 8 pm, sound asleep. Get appointment with a neurologist to determine how much dementia is there, it's very important. Falls will continue.
You need to consider what is her future. Speak to home health. They can explain what her needs are and why she is on pallative care.
You need some peace of mind that discussing situation might afford you. Keep her comfortable during 2% of time she is awake.
(Walking has nothing to do with hospice. Dementia is a hospice diagnosis. At least with hospice a nurse can visit once a week and check her status. And discuss case with you. Hospice is also pallative care not diagnosing and treating. Evaluative tests , eg ER visits aren't covered when patient is on hospice. )
now that ive said that remember that some pain meds may NOT work AT ALL. It can be trial and error.
But also remember that there are things your mom may not be able to tell you and it may take awhile to find something that helps.
tramadol and hydrocodone have not helped me. After knee surgery I took oxycodone some nights just to help me get some sleep. If i took pain meds during the day it was aleve. i didnt take too much oxycodone since i was afraid of addiction.
if you think your mom has kidney problems see a nephrologist.
as others have told you change docs and look into other hospices unless youre in a really small town and theres nobody else. Then consider how far youd have to go to find someone that you thinks helps.
theres the old saying that a person at the bottom of the medical class is still called a doctor when they graduate but even people on other levels may not have common sense or any clue. So no matter their level keep YOUR MOMs needs in mind and that one of the best things a doctor ever told me was that if he didnt know the answer to something i asked hed find out.
Keep doing what you are doing for your mom. Make sure to take a couple seconds for yourself each day.
If your mom is in that much pain then I would demand better drugs or different nurse / Dr. or both.
She is completely "out of it." She fights me constantly and took swings at the last EMT crew. She hits me, won't let me change her and is just awful.
I know she needs more help than I can give her (I can't lift her and it is just me in the house) but how do I get help?
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.
you are doing fine and you will get her what she needs.
How is your mother? Has her pain subsided?
Please keep up updated on your mother's status.
Sending hugs and a special prayer to your dear mom.
I would also file a complaint against her license. It sounds like she is burned out and should not be practicing her knowledge on patients.