Cirrhosis Diaries, Post 3
This summer our dog Charlie kept bothering my mother when she would come out of her room to eat a meal with us in the main room.
Many months later, after her diagnosis of untreated fatty liver disease morphing already into late stage cirrhosis, did we figure out that she had been sneaking and feeding him her food. The undiagnosed cirrhosis had caused a severe reduction in appetite, so Charlie benefitted at her loss.
At home, she and I went back and forth about her need to eat. How did I know it was a symptom, one of many already manifesting, of this very complicated liver disease?
At the nursing facility where she is supposedly rehabbing enough to move to an assisted living facility, I am told by the attending nurse practitioner that eating and eliminating are the two major factors in my mother remaining lucid and her cognitive functioning remaining higher.
A few weeks back, due to a slip up in her medicines (you can read that post here>>), my mother fell into a kind of temporary dementia. I am learning in Facebook discussion groups that with cirrhosis this can come on from poor nutrition, high ammonia levels, lack of elimination. I get more info out of those about what can happen than I do generally from the medical staff at the facility where my mother is.
I study the food guidelines at the American Liver Foundation, and they seem reasonable: fresh fruits and vegetables, low saturated fat, protein, no sugars, very few starches, high fiber. I am like, I got this.
Except. Except…the nursing home does not.
I ask about the diet that my mother is fed, and I am told that at the nursing home diets cannot be tailor made — that generally my mother is on a low salt and low sugar diet.
I note these items coming in on her tray: lots of mashed potatoes, lots of cranberry “drink” with high fructose corn syrup, no fresh vegetables other than an occasional salad sprinkled with cheese (she is not supposed to have cheese), no fresh fruit, no whole grains — not whole grain bread or rice.
So, I begin to bring in food that follow those American Liver Foundation guidelines.
During the episode of the medical slip, on Monday, Dec. 23, I arrive at the facility at 7:30 AM to wait for the nurse practitioner (NP), who proceeds to tell me my mother could die at any moment, and that she was going to recommend hospice. My mother has been largely unresponsive that morning.
The nurse practitioner convinces me I ought to release my mother to a DNR — a “do not resuscitate” agreement, which I HAD NOT DONE on the Friday prior. I have not yet signed this release.
She also informs me that my mother should not be forced to eat. The issue is on Friday, only three days prior, my mom had been eating just fine and able to comprehend what was happening.
I return that afternoon, and someone has fed my mother some of the yogurt I left behind for her. She awakens enough to eat that and other food I have brought, and she eats the facility dinner, too. I feed her that evening.
Dec. 23, 24, 25, 26, 27, 28, 29 pass — I feed my mother, by hand, lunch and dinner — and do not force her to eat.
By Dec. 30 she is lucid again and able to feed herself. She is not as alert and able to comprehend her situation as she had been on entering this facility on Friday, Dec. 20.
I keep on offering my mother both what the staff brings from the facility’s food and what I bring.
Jan. 2, I arrive in the late afternoon and my mother is agitated, complaining about her bed sore. I explain that a nurse will have to attend to it.
My mother is sitting in a wheelchair, and is NOT wearing her hearing aids. She wants ice water. She keeps repeating this.
I have brought her the same food she ate the week before without incident. My five year old son is also there, playing and being loud.
She has had a second drink in 24 hours with high fructose corn syrup in it — and she is complaining of a “sour stomach.” She has been eating the facility food for two days — and this is the first complaint of her not feeling well on her stomach.
She eats some of the food I bring. I bring in the food provided by the facility — it is dinnertime — and she tells me she does not want it. I bring it back outside and set it in the cart.
My mother has not eaten much that day. I explain to her again what the NP had explained to me the week prior — that she needs to eat in order to stay alive. Except, to explain this to her, yes, I have to yell, as she is not wearing her hearing aids. Until now, I have not had to learn to put them in for her, but it is something I figure out in the next day or so.
I explain that what I am bringing to eat follows the guidelines for staying alive. She tells me she does not care if she dies. I tell her that other people care whether she dies.
I ask her again to try to drink some of the drink I have brought — this is something she drank fine earlier in the week.
She says she doesn’t want it.
I ask her again to try.
Because I have to yell, both the day before and this day, I shut the door so we do not disturb anyone else.
I am sitting and talking to my mother, when a person I have never seen before, I only see her badge and it says CNA (Certified Nursing Assistant) comes in to ask what is going on.
I tell her that my mother is not wearing her hearing aids, and I had been asking her to try to drink some more of the drink I had brought in. I say my mother had also been saying she wanted to die, and I had responded that we did not want her to.
This CNA does not comment on what I say…she turns to my mother and asks what is going on. My mother says she does not want the drink. The CNA turns to me and repeats that my mother does not want that drink.
I say she has to eat or drink something. Clearly, in my head, I hear the NP explaining to me that if she does not eat, she will die.
This unidentifiable CNA says they also have food from the facility.
I do not get into a long explanation of my mother not eating the facility food last week, or, that it is not tailored to someone with supposed end stage liver and kidney disease. I am tired. I respond in shorthand:
We are organic farmers and that food may not be up to our standards.
This CNA then tells me that if I do this (I actually remain unsure of what “this”) is again, she will have to ask me to leave.
I am exhausted. I am too tired to really drag this out and go find managers or nurses or get into it with anyone.
I ask her if she is asking me now, that is, to leave — and she stands with her mouth open, so I gather up our things and my son.
As the CNA goes down the hall, I comment that perhaps they can keep my mother from falling out of bed again (just that morning she had fallen out for a second time in one week).
I then go outside and call back in to state what has happened.
My mother needs:
- A social worker to discuss the severity of her condition with her
- Ongoing discussion with a social worker about her condition
- Her hearing aids put in daily
- Assessed by a doctor for disease stage — and the prognosis for her treatment to be based on this assessment, not on a set back due to medication not being reviewed by the facility and caught only due to my advocacy and vigilance
I come back in the next day. I am there, 9:30 AM, and this time I have three pages of typed notes.
I think, what happens to you in a system if there is not anyone to type up three pages of notes for you?
Earlier in the fall, I substitute the middle school class at taught at my son’s community school. They were reading Petey, a work of fictioning imagining the “good old days” when we warehoused people in “facilities” their whole lives and did not give them physical therapy, or work within the framework of their capacities. In this class, the teacher reads one book aloud to them. After one reading, I couldn’t take much more of it. This was way before my mother ended up where she is now.
This morning, after going through my list and one talking to my mother, my questions to the two social workers sitting there, placating me, came down, really, to this set:
What is ethical here?
If they were in my shoes, what would they do or try to get their mother to do?
They shift in their seats, look at the floor.
We all agree that are things they will be able to say to my mother that I can’t.
And there will be things I can say to my mother that they can’t.