Mom’s health-I’m numb from the hell we are going through. What do I do?

You're not failing her. The healthcare system is. It seems to me that elderly are largely ignored, at least in the U.S. Dementia patients DO have headaches. My mom does. Steroids DO cause headaches. I get injections and always have headaches. I don't have much advice, except by some miracle find a caring doctor, someone who cares about the elderly. But you are not failing your mother. You obviously care about her a lot.

You have the right to change hospice/palliative companies.

Your mom has dementia. Is she capable of reporting her symptoms? And Pallative care. To make her comfortable not treat and cure her. Therefore no diagnostic scans. She is Sleeping 98% of time and not eating. She sounds at end of life. Whatever her symptoms, they aren't disrupting her sleep.
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. )

I don't get it about hospice. Both my parents used a walker and were able to speak fairly well. We were told if there is ANY weight loss, falls more than usual, not eating as well or sleeping more, worse dementia. I don't think the hospice that you're dealing with knows their stuff.

Your mom's issues with headache my not be from dementia. Ask her doctor to do a head scan. She may have an aneurism that can cause awful headaches and nausea. My Mom died of aneurism, which was at the base of her head. She had major headaches and the doctors told her she has migraines. Only when she passed they found the biggest aneurism at the base of her skull. You should demand your mom get a head scan. An aneurism can happen between now and two years ago. Go to a different doctor if you have to or pay for one if your financially able.

I agree with Maryqesq1, she is on her last, and probably does have dementia and at the last stages. During the last 2 years or 3, from people I knew, like the Caregiver Support Coordinator for Alzheimers/dementia, she personally experienced her husband not eating and sleeping all the time during the last 3 of 19 years she took care of him with early onset Alzheimers ; my daughter-in-law's grandmother was forced fed with liquids, and not much went down, and slept all day and all night on Alzheimers during last 3 years. This type of sleep is usually in the fetal position. These are just 2 examples plus my husband, eating so slight as your Mom, and sleeping 98% of the time, He went from the bed to the recliner, slept all day, then to bed early and slept all night. Hard sleep, too. I had to force him to get up and go to the bathroom, eat a little, then back to the recliner and off he went to sleep.
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.

Unfortunately, this happens more than not....the lack of interest or down right neglect of seniors. It happens a lot with my mother as I have been witnessed to. I feel after you reach a certain age they just don't care about you anymore....your dispensable, you don't contribute to society anymore therefore there is no real interest in spending time or manpower on helping them. I've had to be persistent and even argue to get help. It's disgusting.

Looks like you've received some excellent advice in this blog. Keep being an advocate for your mom! Suggest having a pharmacist review her meds. Important thing right now is pain control whether by her doctor or ER doctor since Palliative care has been nonexistent. You may need to get a new doctor for her if you keep getting the run around. You don't mention how long you've been involved with her health journey. Are you up to date on all her diagnoses? Has she kept secrets from you about her health & you're coming in after her condition as worsened? I pray for pain relief & comfort for your mom & peace & comfort to you. 🙏

Aneurysms come from falls and smoking. How old is she and did she already have a rather large stroke ? My friend's Mom died after kidney failure-- she was in a lot of pain. With dementia they cannot tell you how much pain they are in, but you can see it in their face and jaw clenching. You are not failing her. Doctors often do all they can and over-prescribe all the alzheimer/dementia drugs as well as thyroid drugs... maybe it is time for a second opinion. You do not have to tell the primary care doc.. or you can. If you take her to the ER-- the usual thing will be for the ER doc to put her in hospice and then they will give you the comfort care lecture and the local hospice folks who are stretched these days will be "busy" more than often and the level of "care" will decrease over a period of months and they will basically wash their hands of your mom. I saw how little they did. It was shameful and typical of a bunch of "administrators".
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.

Reading before reading other responses. Gees am I pisssed at what you've been told especially since I am just home from 3 days in the hospital where I had to advocate for myself.... So my thoughts are, get a new MD for mom, dismiss that D--- nurse for laying a guilt trip on you. There are typically more than one hospice program in a town. Hopefully yours is one. Fire them. Take urine sample to NEW MD.

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...

Momsonlychild: Your mother needs a more competent company for her medical care. I am sorry that I'm seeing this three days after your initial post, but it is quite clear that this company needs to be fired for their incompetency in so many areas of her health. I'm flummoxed as to why the doctor can still practice medicine! The doctor's medical license should be revoked.

Is your Mom at home? Definitely, look for different palliative care.
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.

Do the UTI test that you mentioned. What can it hurt? Also, I have no idea why a nurse would say a dementia patient doesn't have headaches....how does she know that. It's very possible a dementia patient is unable to explain to someone they have a headache, but if mom says her head hurts, then something might be hurting.

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.