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

Since your asking "what do I do?"

IMHO: Call 911 and get her to ER!

Exactly, have her taken by paramedics to the ER. That will get her seen faster than if you take her. Follow them there and let the staff know she can’t reliably speak for herself due to dementia

Please take your mother to the ER via ambulance now, and get some help for her. She needs a workup and pain medication The ER should be able to request a consult with a palliative doctor. In stressful times like this you need a reliable agency and physician! He/she should be able to assist your mother in a compassionate manner and help you get the right home care. My mother had a consult with a palliative physician, and he was so helpful. I ask for him when my mother stays in the hospital. I did not like the agency mother had, and he suggested a top agency and we had this agency for almost a year. All set up if and when my mother needs palliative or hospice care. The best agency I have the privilege to work with.
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.

Some below who suggest taking Mom to ER will get things such as scans and MRI done faster are correct. However, you mention that Mom is now on palliative care and is, in general, failing. Palliative care means that there is an understanding with Mom and family that she has no cure, and is moving toward death. There is very little "diagnostic" care done in palliative care. It is more comfort care. However, for Mom there is NO comfort. Whatever is wrong within Mom's head, even a cancerous tumor, there is very unlikely a cure for it, and the treatment would be harder on Mom than anything else; so the tests are almost irrelevant.
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.

Dear "Momsonlychild,"

I feel terrible that you and your mom are going through such "hell" and "misery!"
You seem to be more on top of things than the hospice Pallative Care Team/Doctors. Of course, I agree with all the other poster's comments about getting her to the hospital. What I don't understand is why she doesn't qualify for full out hospice care. I don't know what's causing the headaches but, even if she did have a brain scan a couple of years ago like you said things can change and it has. As for her nausea, it could be that she's in so much pain between the headaches and back pain that it is making her feel sick. I'm wondering why they didn't give her Morphine for the pain too. I know when my husband gets migraines, he gets nauseated. I don't like what I'm hearing and am very concerned for both of you. I understand you being so upset, crying and failing her (you didn't). The problems sometimes is that doctors and/or facilities don't want or like to listen to the family member. They don't always like being questioned, second-guessed or held accountable. I've experienced that with my my mom and it got very wearying going to constant battle on my mom's behalf.
My mom who is 95 with Alzheimer's was completely mobile although I did buy her a walker after Thanksgiving just to have on hand and get her used to it.
Also, she was able to dress herself. Right up until mid-April when she nearly died in her AL apartment from severe dehydration, COVID, bi-lateral pneumonia and a severe UTI. She survived and went to a rehab facility for three weeks and we had hospice waiting in the wings because at that moment she did not qualify for their care. Upon being released and having her placed in a new facility in their memory care unit, she now qualified for hospice. Why? Because she lost 20 lbs., could no longer walk and wasn't eating much. She is now pretty much bedridden and needs assistance. She has fallen at least 8 or 9 times since moving in at the end of May.

I am no doctor, but there is something very wrong going on here. Her labs have come back abnormal, her BMI is 15 and the fact that you have to take a specimen cup of her urine to have it tested is horrible. Kidney failure is a common issue. I'm actually in shock at what you are being told. Didn't the hospice company give you the booklet of the end stages of life that occurs within a years time period right down to the last week and days? I know ours did when we were given one for my dad when he was dying in 2004 and now with them being involved in my mom's care this year.

Please, please get her to someone else right away so she can be evaluated by another objective party (ER doctor) at a hospital. You know your mom better than anyone else as far as your initial instincts about the situation - follow them.
Once again, I am deeply sorry that you are going through all of this. It's hard enough seeing all the rapid changes but, when you have to take your time and attention away from being with your mom to fight for answers, tests etc. that's brutal. You will be in my thoughts and prayers and I hope you can let us know what happens! Sending you a big hug!!

As near as I can tell palliative care in America is hospice without any of the benefits that go with hospice, other than a philosophy of care it is pretty much useless. You doctor and the nurse assigned to you are failing you and your mother enormously, the whole point of end of life care be it palliative care or hospice is to maximize comfort and quality of life, neither one is assisting you to do that. It's past time to get some answers: call 911, put on your Xena Warrior Princess persona and kick some azz.
(And from my web search Fioricet in America doesn't even have codeine in it, so what is that nurse's problem?)

You aren’t failing your mom. The Dr and nurse are failing her and you. It sounds like malpractice to me. She should be in Hospice.

I was able to get her in for a MRI today at the hospital. Now just waiting for results. Taking a urine catch to dr tomorrow for additional kidney tests.

Re: Hospice. My mom was deemed eligible for hospice while still walking with a walker and speaking, although with aphasia.

I think perhaps you need to talk to some other hospice organizations...and point out her weight loss?

I will say that at the point that my mom was in nonspecific pain, but clearly suffering, I went to the DON in mom's NH and said "she needs morphine" (I had been told it would be available for the "end game", hospice or not, because my brother was terribly reluctant to sign off on hospice). They waffled about the morphine and I basically bullied my brother into agreeing to hospice.

Mom's pain was alleviated and she floated off 3 days later.

Find another hospice organization to come see her. Please.

Funny little antidote-the lady who works at the hospital check in has been there for years and remembered me. As we were going over Mom’s meds she said I’m very surprised they put her on Steroids, I said me too! She’s like they cause them, I said that’s what I told her Pallative care nurse. She said what’s her first name, I told her and she said “Oh she has quite a reputation here! She’s caused trouble and you can’t tell her anything, such a know it all!” That made me feel better!

Mom'sonlychild; Who told you about this "no walking" rule?

I have never heard that in any context. I think that you need to fight, if not for hospice, then for adequate pain relief for your mom.

Ask the hospice folks to show you where in the Medicare regs it says that mom has to no longer be ambulatory.

I seem to recall a
colleague telling me that she was told that her dad to be considered "homebound" in order to qualify for hospice. But he was still attending church and needed to get his hearing aids adjusted.

I told her to call and ask "specifically" about those two issues and OF COURSE they were excluded from "homebound".

Sometimes the folks who read these regs over-interpret them. Get on the phone with a supervisor from the Palliative Care program. Get a new nurse and get clarification on why mom doesn't qualify for hospice.

Demand a new evaluation.

Don't take no for an answer

I think I see about the "no walking and talking" thing; below is something from VNSNY. I wonder if a different Hospice organization might interpret the rules a bit more loosely.

The main thing right now is that mom is in pain and THAT is not right. She needs better pain relief, no matter WHY she has headaches.

Perhaps she needs to come off ALL the the meds that she's on except the Tramadol to find out if any of her meds are CAUSING her headaches (why is she on a steroid; does she have inflammation of some sort?)


I found this from Visiting Nurse Service of NY:

Advanced illness patients may exhibit one or more of the following core and disease-specific indicators to be eligible for Advanced Illness Care from VNSNY Hospice and Palliative Care.

Core Indicators for Hospice:
• Multiple hospitalizations
• Physical decline
• Weight loss • Serum albumin < 2.5 gm/dl
• Infections
• Stage 3–4 pressure ulcers
• Multiple comorbidities
• Dependence on assistance for most ADLs
• Signs and symptoms such as increasing pain, dyspnea, nausea/ vomiting, edema, pericardial/pleural effusion, ascites
• Karnofsky or Palliative Performance Scale (PPS) score < 70%

Disease-specific Indicators: Dementia Due to Alzheimer’s Disease and Related Disorders
• Stage 7 or beyond according to the Functional Assessment Staging (FAST) scale, including:
– Unable to walk/dress/bathe without assistance
– Urinary and fecal incontinence
– No consistently meaningful verbal communication
• One of the following within the past 12 months:
– Aspiration pneumonia, pyelonephritis, septicemia
– Multiple decubitus ulcers, stage 3–4
– Fever, recurrent after antibiotics
– Insufficient fluid and calorie intake

Heart Disease
• NYHA Class IV Heart Failure; angina
• Discomfort with physical activity
• Supporting factors: – Ejection fraction ≤ 20%
– Arrhythmias resistant to treatment
– History of cardiac arrest or resuscitation
– Brain embolism of cardiac origin
– Concomitant HIV disease VE-456-17-HospiceCandCard_AR_3-7-17.indd 2 3/9/2017 3:45:06 PM

Liver Disease
• PT > 5 sec, or INR > 1.5
• Serum albumin < 2.5 gm/dl
• In combination with at least one of the following complications: – Ascites despite maximum diuretics – Spontaneous bacterial peritonitis – Hepatorenal syndrome – Hepatic encephalopathy – Recurrent variceal bleeding Pulmonary Disease
• Dyspnea at rest • Recurrent pulmonary infections
• pO2 ≤ 55 mmHg (on RA) or oxygen saturation ≤ 88%

• Supporting factors:
– Cor pulmonale – Weight loss > 10% in past 6 months
– Resting tachycardia > 100/min

VNSNY also offers hospice and palliative care for patients with cancer, renal disease, CVA, HIV/ AIDS, ALS and other chronic neurodegenerative diseases. Source: Local Coverage Determination (LCD) for Hospice—Determining Terminal Status (L25678), National Government Services

MOC; How are you all doing today?

I would fire the company that is not listening to you and find one that doesn't have a know it all witch nurse. One that will treat your mom based on her needs not what a nurse knows.

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.

Momsonlychild,
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.

Y’all will not believe this! As I was leaving for a specialist dr apt(my hubby was watching mom) there was a lady in the hall looking for unit 102. I thought she was delivering our groceries. So I said that’s my mom’s address. She said oh, what were our names. I told her. She said she was looking for us. I said you must have our groceries to which replied, no I’m from Adult Protective Services!!!! “Someone filed a complaint against me! The complaint stated I was neglectful, my mom had lost weight(of course she has) and get this- I only feed her strawberries! Can you believe this! Well after all was said and done the investigation revealed of course no neglect. After my hubby and I explained what we’d been thru with the Pallative Care nurse & her dr she was appalled! She was impressed at how meticulous my record keeping was and asked for copies of all 107 text messages that I purposely saved between the nurse and I. She is going to contact Hospice herself and see what she can get done! She remarked what an amazing job I was obviously doing with my mom and apologized for what we’ve been through. We see mom’s dr tomorrow and you can be darn sure this will be addressed. Thanks again for all the love and support. I’ll let you know what the dr says.

I am so sorry to hear this. I can only imagine the turmoil inside of you. They need to be upfront with what is going on. It seems like she is shutting down which is part of the dementia process. I know it can be painful to watch as I have seen it myself with my MIL. I pray for strength and courage. It looks like you have done everything you have been able to. Her illness is out of your control and our job is to be there to provide the best quality of life possible.

Hi. It seems odd that she won’t qualify for hospice. I think you should call a hospice service and have them come see her. My dad has dementia and he passed on Friday. We all went through so many ups and downs since he was diagnosed in 2009. Walking around affects nursing home acceptance from what I experienced but my father was on hospice for over a year and he was bolting around in the beginning. We are paralyzed by the medical industry unless we take charge. You need to get a hospice person over there... don’t just listen to one opinion. Take charge. Tell them what you want and what you think because you will regret it if you dont... and fight like you would wish to be fought for. You are an advocate for someone that cannot take care of themselves.... be strong and get them what you think they need. You are not failing... but when you watch someone sick you feel like you’re failing if you cannot take the pain or process away and that would be impossible. You care, you are there, and I know you will be taking charge and getting her the care she needs. I fought many doctors and nurses opinions... and I won. Yes my dad passed but I did the most to make sure the care was there and the comfort and that’s where hospice comes in.
you are doing fine and you will get her what she needs.

First, please know you are NOT failing your mom. Based on the description of your mother's condition, you are both being failed by your local resources. Based on Medicare standards, (loss of weight, decreased nourishment intake, BMI, continual sleeping) your mom qualifies for in-home hospice care. The caveat is if you continue to provide curative care. Hospice care will help you make her comfortable and provide a better end of life quality care for your mom and for you. If one hospice agency denies her, keep trying. Another one may accept her. I have seen this more times than I can count.

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.

And you are still going to this medical center why? The nurse is failing you!! Seriously take your mom to another doctor. You should not be this stressed over getting answers from her medical team. Stay strong. Go somewhere else.

Check her d hydroxy level. This is very important. It may be critically low. Optimum levels are 50-60. I have seen seniors below 20. Also, the high quality Vitamin D3- i.e. Vitamin D3 with VeSSIsorb that are highly assimilable are the best quality to take.

Get another PCM. She probably is having some neurological issue. She probably needs a neurologist consult and a cat scan. Then, you can discuss options with the neurologist. Just because somebody is on hospice does not mean we do not address their issues.

There are many different hospice communities. I think you need to find another. Mom's palliative care team is not serving her well at all. Can you reach out to her former primary care doctor for help? Ask for a social worker. As for nutrition many times my dad could not eat and we made nutritionally dense smoothies that he enjoyed. We incorporated greek yogurt, spinach and all kinds of veggies. I am concerned about your mom's headaches and pain. Something is going on. She at least needs a Cat Scan but I don't know her age or health issues.

GO SOMEWHERE ELSE. Get a different agency... get a different doctor... I have seen some great people in the medical field but sadly, much of the time, I have seen way too many that are horrible. Surely, these are NOT the only nurses and doctors available to you. I have worked as a nurse and home health aide. I have had to also work with some of the "yahoos". Again... change physicians... nurses... whatever you have to do.... hugs..

I am in same boat. Mom who is falling and terribly agitated) was taken to hospital twice this week. Because she has no fractures and blood and urine were "ok," she will not be admitted. I think it is because of COVID. I am told she needs to be in the hospital 72 hours and have a "workup" before she can go to nursing home by the home health agency. The hospital does not want to get involved.

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?

We beat ourselves up and second guessing ourselves on did we do enough until it makes us sick. I did with my mom until I realized it wasn't me that didn't do enough...it was our healthcare system that fails us.
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.

You are certainly doing everything you can and it is frustrating. My experience with my husband is that he can't describe what is wrong. he says I need my walker and gets upset and confused , takes a long time questioning before he can decide he needs to go to the bathroom. another time he will keep saying I'm locked in here and repeats and repeats...I finally figured out he wants to go to bed. Will she be able to tolerate a brain scan? Prayers for you and your mother.

different meds work differently on different people and headaches could well be caused by tramadol.

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.

How old is mom? Her headaches, and kidney disfunction are likely caused from severe dehydration. Medications won't work if her circulatory system is like sludge...get her to really amp up the fluids, or else she's going to fail very quickly.