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

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

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

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.

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!

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.

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.

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.

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?)

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!!

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.

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.

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

Since your asking "what do I do?"

IMHO: Call 911 and get her to ER!