Mom FAQ

These are questions I have answered several times over. I am posting these here for your information and my own sanity.

1. What is the terminal diagnosis?
2. What is she really dying from?
3. Does Hospice mean she has 6 months left?
4. Where is she?
5. What is being done now?
6. What are you trying to do?
7. Can she have visitors?

1. What is the terminal diagnosis?
The terminal diagnosis is complications from chronic liver disease. Mom was diagnosed with NASH (non-alcoholic steatohepatitis: for more information, click here) in October 2009 after tapping some fluid from her abdomen. This fluid was confirmed to be ascites. People with NASH rarely die from it; rather from complications related to the lack of a functional liver. Currently, Mom has increased toxin levels, ascites fluid, and the associated personality changes that tend to follow when your brain isn't receiving the nutrition it needs.

2. What is she really dying from?
NASH is treatable, so why is she dying? Mom has had a total of 9 stomach surgeries. Her GI tract no longer functions as normal. A healthy person might eat a sandwich and it will take two or so hours to digest. Mom will eat two bites and it will take eight hours to go through her system. She suffers from severe malnutrition - she is starving to death. The increased toxin levels combined with a lack of real nutrition, and a new medication that caused incredible fatigue, are the cause of her sudden downward spiral in the last two months. Do not mistake this to mean she was healthy two months ago. She has been ill since her sister, Darlene, passed away on March 9th, 2008. She had problems eating, which caused malnutrition. She utilized TPN via a picc line in her arm for 9 months prior to the surgical removal of a small bowel blockage in July, 2009. She barely healed from surgery and went back into the hospital in October with three separate infections (she has little or no immune system at this point). TPN aggravates the NASH, and we discontinued TPN December 19th, 2009 in hopes that she could hold her weight steady by eating. This was unsuccessful, but she does not wish to use TPN again. It has been said, and I agree, that the real reason my mother is dying is because she does not know how to live without her big sister.

3. Does Hospice mean she has 6 months left?
No, it doesn't. This was the way Hospice worked in the past, but no longer. Hospice only requires a terminal diagnosis and that you do not attempt to cure the terminal disease. This means two things: (1) Mom can be on Hospice for 2 months, 6 months, a year, more. However long she has, or she can decide to fight and cancel Hospice care. Canceling Hospice care would likely put her in a hospital and back on TPN, and there isn't much to do from there. (2) The real difference with Hospice care is that they treat the symptoms without treating the disease. This will be explained below. Another benefit is that Hospice is here for me as well. I have been caring for Mom on my own since Aunt Darlene passed, and have reached the extent of what I can do for her. "Safe, comfortable, and clean" is what I want for Mom, and I am no longer able to contain the situation here and provide that for her on my own.

4. Where is she?
For now, Mom is at home. Hospice is providing me with a social worker to help me get her on MediCAL and see if we can't get her into a nursing facility. Hospice has no facilities in this county, but they will go wherever she lives. Thus, if we can afford (through MediCAL) to get her into a home, Hospice nurses will visit daily and oversee her medical care. They will make sure she is not neglected and gets the medications she needs when she needs them (no nightmare nursing home stories). She has fallen three times in the last two weeks. Sometimes she cannot get up unless I help her, and this is a scary thought when I am at work for 8 hours. Yes, I have come home and found her screaming for help on the floor. No, I don't wish to repeat it. If we cannot get her into a home, we will try to set up in-home care. This would be more like companion care, and would likely require IHSS (In-Home Supportive Services), which is unlikely if we can't get her in a home to begin with because IHSS is a MediCAL program. She needs 24 hour care. Whether she gets it is another story.

5. What is being done now?
Mom is on medication for pain and her other conditions unrelated to liver disease. She has started a medication that helps clear toxins from the body to try to negate the confusion and hostility that she is experiencing. Nurses come to check her vitals. Home health aides come to help her bathe and eat.

6. What are you trying to do?
The chaplain is coming to talk with her in the next few days, to help keep her calm. The social worker is working on about 500 issues, including getting her on MediCAL. We are working on getting her physical therapy for BPPV to help her regain some balance and help lessen the frequency of falls. We are re-arranging the house in case she has to stay here. The plan would then be to put a hospital bed in the dining room and make the dining room her space. Her room is cluttered and her dogs walk all over belly and the difficulty in keeping her room and her dogs clean makes it an unsanitary condition. At the moment, she is extremely resistant to sleeping in a hospital bed, but willing to move the dogs away from her swollen belly. Safe, comfortable, and clean.

7. Can she have visitors?
Yes, she can have visitors on a regulated and infrequent basis. Right now, her medications are largely still under her control. This is bad because she often doesn't remember if she has taken them or not. She either skips or double doses herself. She forgets to take the laculose - the medication that will help clear toxins and help her to regain herself. This means that she is very often confused and hostile when she is awake. She is asleep about 85% of the time. She does try to be nice to people she likes at the time, but she is resistant to nurses and especially to me. She visited with Aunt Nola this weekend, rested and then chose to walk away from her mother a few hours later. She is still not herself. I do not say this to discourage visitors, but rather as a heads up to those who wish to visit. Until her meds are consistent, she will be like this. If you have my number, call me. If not, comment and let me know who you are and we will find a way to touch base. Everyone who reads this should already know Mom anyway, so that shouldn't be too hard.

I will add more posts or edit this post as necessary to help keep me from repeating myself.