My mom has liver disease with encephalopathy. My partner and I live with her to take care of her. She is also a part of a liver institute program and is on a liver transplant list. However, her scores to get a liver are very low and she now believes she will not be getting a new liver in time to benefit from it (she is 67 years old and the cut off is 72 I think). Unfortunately her symptoms are far more severe than her scores read. She has struggled with encephalopathy for years now. She is of course on lots of medicine to help control it, but she does not remember to take it often enough, and is not very compliant with the medicine, even when administered. Mom has now made some very bad financial decisions. She has always wanted to move down to Panama. Over the past 5 months, she has completely spent down all of her savings and income, to the point that I do not think she will even be able to make her part of the mortgage this month. She is insisting on flying out of town to a conference about moving to Panama that is run by a very fishy company. She has already bought tickets and spent tons of money on the trip as well as other scams in an attempt to make money. She has had a weakness for the get-rich-quick scams all her life, and the disease has seemed to exacerbate that. I am very afraid that she will get to the hotel and get very sick and confused due to the encephalopathy, especially as she cannot always remember to take her medicine even when alarms are set to remind her. I have been against the trip the whole time she has planned it since I believe the whole thing to be a scam. I finally put my foot down this week and refused to help her with anything relating to her going out of town. I do not have the money for a plane ticket if she gets down there and gets sick, and now she does not have any money left to fall back on either. My partner and I have begged her not to go, but she is insistent. I am on an FMLA program at work, but I do not have the money or days off to go down there with her, which was a concern all along. I contacted the liver institute where she is a patient and explained the situation. I was looking for help from the social worker, but unfortunately she has left the institute and they did not have one available. I spoke with the clinical coordinator for my mom, but she said I do not have any legal recourse as my mom is technically of sound mind. At this point it sounds like I have to step back and let her make these bad decisions. I was at least somewhat willing to let her do that when it was her money (as much as I tried to get her to stop). At the time she was making these decisions she was coherent all of the time. But now I'm worried it will end up being the last bad decisions she's made. Over the past couple of months, she has declined since she has not been compliant with the medicine. This has happened before, and sometimes it ends up with her going into the hospital. They will simply pump her full of the medicine and send her home. I was against her making this trip and spending all her money when she was doing "ok" mentally, but did not seek any legal action at the time. Again, she was technically of sound mind. Now I am worried she will end up in a hotel room comatose, if not dead. She is of course insisting she will be fine. We have a couple of social worker friends who have advised us to get a psych eval done. I know mom would absolutely throw a fit at that, but I am not against it. She had to have one done before she was allowed on the liver transplant list. I do not know if that will help at all for the near future, though. She is due to go out of town in just a few days. The problem is she has good days and bad days. She had a very bad day yesterday, where she was walking the streets trying to find a ride to the mall. Then today I stayed home from work, thinking to take her for a psych eval and she was much better. Does anyone know if there is anything I can do to keep her from going at this point? Would a psych eval at a hospital even help with that? Her mental status is not related to dementia or Alzheimer's but her symptoms are similar to that. All I've been able to do is just refuse to help her with making the trip because it seems like I'm enabling her. That's unfortunately not working very well because then she feels like she has to resort to drastic measures to get what she wants. What can I do to try to avoid this terrible situation I'm afraid is coming?
I pray that you find a helper for her and she gets to go have one last hoorah!
Encephalopathy affects her brain. Her decision-making, her personality, her ability to reason. This alone should preclude her from going out of town. As should the possible hepatic coma. I agree that it's an awful idea for her to go but I don't think she is competent to make her own decision to go. The fact that she's going demonstrates a lack of sound judgement on her part.
I think you have 2 choices, neither of which is ideal: 1) you send her off and hope for the best or 2) you call an ambulance and hope that in the chaos of the paramedics storming in she gets flustered and agitated and she's transported to the hospital for evaluation. Once there, perhaps they will find some issues that need to be addressed and keep her there for a few days. I agree the second option is drastic but my dad had hepatic encephalopathy as well and got himself into some trouble as a result of his poor judgement (due to the disease). But he wasn't 2,000 miles away where I couldn't get to him.
I hope you find a solution. I agree with you that it's a very bad idea that your mom travel.
If she crashes while in Panama, someone there will have to figure out what to do. You can't possibly ride to her rescue, nor are you required to.
Because she is competent, she is free to make bad decisions and suffer their consequences.
I know you must be worried sick. If you step back and feign disinterest, she may come to her senses.
I can see how worried you are about your mom and her condition. I think anyone would be.
I think the best medical advice you could find has told you that your mom has a right to make her own decisions. Especially since she did recently have an evaluation.
And also there is the fact that she is acting within her character.
Since your mom has had her condition for a long time she is probably not as frightened of it as you. Sort of a learning to live with it.
I have friends who own property in Panama. Actually many Americans live there or have second homes there. Hopefully the group she is going with will miss her should she become ill. Perhaps you could convince her to carry instructions on how to contact her doctors should she become ill.
I’m sorry I don’t have the magic answer to keep your mom at home. I imagine she would be very unhappy if you were successful.
Do pick up the book. “Being Mortal:Medication and What Matters In the End “ by Atul Gawande.
Come back and keep us updated. Hopefully others will have better suggestions.