As I last resort, I am turning to this forum for help. My sister had Leukemia when she was young (age 2-10). She went into remission. She has always been heavy (And at the start of this story 299 pounds). They found out about 15 yrs ago that she had about 6 slow growing non-cancerous meningioma tumors in her spine and 5 in her head. The doctor all said if she tried to have them removed, she would be a vegetable.
She had a paralysis episode in March of this year (2017), which caused and ER visit. The tumors had all grown. The most serious was completely blocking her spinal canal and the second largest was in her head in the back. On March 16, we removed the one in her spinal canal and she survived. She went to a care center and was able to walk, but still with her walker that she had before. Then a second surgery was needed for a spinal fluid leak (plus she had a UTI). Surgery was a success. But then she wasn't healing properly and a 3rd surgery was needed to clean it up. Then she had one seizure and they put her on seizure meds. She was put in a long-term rehab center. She started having eating issues, saying she was hungry, but not eating on some meals. And other times saying she felt like something was in the way in the back of her throat (This was going on through August). Then in May she had a UTI and they sent her to UC Davis in Sacramento. She was there for about 2 weeks and then back to the care center. In June she had numerous trips to the ER for UTI's, high potassium, high sodium (all on different trips). Then in July she had 2 seizures at the care center. She was admitted to the hospital and they upped her dosage of seizure meds. The next days she had 4 more seizures (all seizures were grand maul). Mentally she is a little off. Still not herself and losing weight. Come to find out, sometime between all the trips to hospitals and care centers from the time they started her on the seizure meds to July, the neurologist found out someone had decreased her meds from 1500mg total in a day to 500 total in a day. In August she had an endoscopy to see why she was having problems swallowing food and to see if something was blocking the way. Her Shotski ring had almost closed. They stretched the esophagus, so that it was open much more for her to swallow. So here we are in October 2017, she hasn't walked since April. Refuses or says she doesn't feel well, so they have her in the system as a refusal patient. She is not eating anything and only drinking water. Her weight now is 186 pounds. Losing over 100 pounds since March and now she's not eating anything. In researching on the internet, a body can only survive on water alone for 4-6 weeks.
I have a call in to the doctor (who is the care center's doctor and is only there like twice a week), to ask him a ton of questions, but thought I would put this out there and see if anyone has ideas. I've tried bringing food to her and she spits it up and throws up. She refuses the food the care center gives her. Says it's awful, which some dishes do look awful. Her taste buds are also pretty much gone because of her meds.
I'm trying to do everything I can as her sister and POA, but running out of ideas. I feel like she is either giving up OR she mentally doesn't know what's truly happening. Most of the time she seems normal, but other times her memory loss and her being mean is a side or her that she wouldn't normally have.
Is there somewhere other than a care center which will take a refusing patient here in CA who is on MediCal? Is hospice something I should look into at this point?
Any other websites that might be helpful?
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That might at least give you some idea what could improve and what might not be able to be improved.
As to a feeding tube, my only experience has been with my father. He was on liquid nutrition (cans of Nestle's ProBalance, for about 4 months).
It was depressing, so if a feeding tube is seriously considered, factor in an increase in any depression she probably now has. This could literally push her over the edge in terms of thoughts of survival.
Has anyone raised the issue of a dysphagia diet, with thickened liquids and pureed foods? It's not very appetizing, but it might help stabilize her weight. Ensure Plus can also be recommended for someone with dysphagia (swallowing disorder).
It's a real challenge to become used to pureed foods, and a real challenge to make them appetizing.
I do think it's going to be a real challenge to provide her with enough nutrition, given the Shotski ring condition. And at this point she's probably facing so many challenges that it's becoming overwhelming.
And unfortunately it doesn't sound as if she much quality of life.
Another concern that hasn't been addressed yet is aspiration pneumonia from the swallowing difficulty. She may at that time face the limited choice of a PEG tub, or attempting to cope with the existing situation.
There's also an issue with a DNR order being mandatory if someone is unwilling to accept a PEG tube. We've been through that. I was told by a speech pathologist that the hospital could not accept a full code DNR for a patient with dysphagia unless that patient agreed to a feeding tube. We ended up rescinding the full code order b/c my father didn't want another PEG tube. I agreed with him.
Another alternative if long term care hospital doesn't work out is palliative care, which is a step away from hospice care. It's not terminal, but rather for chronic conditions.
However, it's apparently still in a start-up phase; not all palliative providers offer the same level of service, so you really have to do some research before selecting a provider.
You have my sympathy and hope for some level of solution, of a higher level of care, and for some alleviation of the challenges you're both facing, as well as support from your friends, and what family might be available.
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Do you think she may have developed a psychological aversion to food? I could totally understand that if she vomits every time she eats anything.
Going to call the Care center director today to advise that doctor still hasn’t called me back.
She is bedridden at this point, because a few weeks ago they brought her from the bed to the chair pretty swiftly and she got a seizure. Not a grand Maul seizure. I think it’s called abson seizure. The Care center said that happened because they did it too fast, instead of moving her in stages. And she’s afraid to have those seizures again, so she doesn’t want them to do it again. She says she does wants to live, but doesn’t know why she can’t eat. There is an RN and a CNA at the Care Home. It’s a large place, but only one doctor about twice a week.
Disclaimer is needed here.
The medical complications, as you know, are beyond me, a lay person.
A patient needs to be monitored for intake and output. If there is a blockage, your sister would require another emergency visit. Just simply feeding her if she vomits could be dangerous. There are other ways to be sure she is getting nutrition.
Hoping the doctor shows up soon for you, and can explain an agreed direction to take concerning her care.
Forum caregivers that have been through this can still support you through this difficult time. So keep posting as long as it is helping.
Are you and your sister on the same page, in agreement, she wants to live?
Is she assisted out of bed and into a wheelchair daily, or bedridden?
Is a proper diet prescribed for her, maybe liquid?
Is there 24/7 R.N.'s at the "Care Home"?
Is there a "DNR"?
That is a good choice! Checking also if the sister is not also lactose intolerant.
Long time ago......When his patient went to the hospital with a suicide attempt (after her therapist said to come to the office, he left, and I was left waiting there for her to arrive after having taken an overdose)!! the internist doctor went with her in the ambulance. He was later spoon feeding her ice cream himself, as a matter of caring, not judging whether she would have quality of life. Just feeding her.
I agree also with CM and Windyridge, because the hospice nurses will know just what to do. That support can help you also.
There is a poster on here who cared for her mother, I think her mother was on hospice 3 years.
Start as soon as possible feeding your sister by small spoonfuls, maybe jello, small amounts. imo.
She does sometimes have a hard time swallowing her pills and she does have gurd and IS on medication for that.
I will print out her meds and have a pharmacist look for anything out of the ordinary. It'll take the doctor forever to do it. I think there's a website where I can put them all in and then it give me the info.
All her eating issues started way back in April after her first seizure. I've told every doctor she has seen that something is off. Obviously she was a big girl and never had a problem eating before. Only swallowing sometimes because of the shotski ring (i'll never spell that right). I think the seizure back then triggered this.
I just feel like no one is listening to me and at this point I think I'm going to do all of the above, but contact the county's Ombudsman. I'll never give up on my sister, because I love her so much. Just extremely frustrating that I have to go through all these hoops. Oh and handle my own life and responsibilities. Thank God I'm single and don't have as many stresses as other caregivers or responsible family member have.
But at some point with the multitude of medical problems this women has, we have to consider whether or not there is any quality of life, and should we be continuing with surgeries and medical interventions.
Focusing on that and the fact that the transfers have already resulted in mismanagement of her meds, revisit the gastroenterologist to see if it has improved, re-occured, or the doctor's orders have not been followed, or lost! (see her records).
She could re-gurgitate or vomit food if she just had gerd alone. Her medications could be getting stuck in the esophagus causing ulceration. She may need a feeding tube.
Do you have medical poa as well as poa? Because she is going to need you to help figure this out. You are correct, to run this by the doctor.
1) Review all meds now (with nursing staff, pharmacist, or doctor) Is she on meds for gerd? With this, I am wondering if she can even swallow or digest her meds?
2) Physical therapy is usually covered by Medi-Cal, so get her re-evaluated and transfered to a good rehab facility, convincing her and the staff that she is a better candidate for PT now that she has lost weight, and will be able to eat with the proper treatment.
That is all I could look up, but hope that it gives you a place to start, so you can get your sister fed.
I am not an expert, sorry.
And so difficult for you and your sister. Just don't give up, okay?
When was your sister's head last scanned? If you have noticed recent behavioural changes as well as the problems with appetite vs. physical ability to eat, I wonder if there have been developments. Worth asking about in case there is anything non-surgical that could be done to alleviate her symptoms - this wouldn't be out of line with palliative care. But anyway that's something to discuss with her doctor.
If there has been one ray of sunshine in your sister's life, it's you. Go on being there for her but please do have a care for yourself, too.