My mom is 87 years old. Her health and quality of life had declined severely over the past several years. This past Sunday she woke up with a horrible wheezing in her chest. She was taken to the hospital and diagnosed with the flu and pneumonia in both lungs, a UTI, and congestive heart failure. We talked with a palliative care doctor, and my mother chose to not pursue active treatment and go into hospice. She was admitted into the hospice facility late Sunday, overnight. The medications they are giving her every four hours seem to be keeping her mostly comfortable, except for when they come to care for her - bathing, changing depends, etc. Then, she yells out “no, no, no!!!!” and is obviously in distress. They have attempted to place a catheter twice, but for whatever reason, it is not working. No urine in the bag, but when they took it out she produced plenty. Since the catheter is not successful they will have to keep changing her depends often and cleaning her, which is horrible to witness and hear. My question is this: What are my rights here as far as pain control for her? If it were up to me, I would have her more comfortable and ‘out of it’, sedated if possible. Her doctor is making rounds and I’m not sure how to handle the conversation. I will tell the doctor all of this, but is there more I should do to keep her completely comfortable?
I can’t be sure but I imagine it’s like if you are really sick, tired, in pain, and in a bad mood and you have just fallen to sleep, and someone to don’t know starts rolling you over, removing your clothes. and poking at your privates with a wet cloth. I would be pretty mad and grumpy about it, and I don’t have dementia.
I read about one woman who had dementia and lived at home. An aide can twice a week to bathe her and the entire time the woman screamed at the top of her lungs, “Help, police, they are trying to kill me” and similar.
Like someone said, they lack all filters.
Assuming you are the point person, then you have a lot of say and can ask questions and make decisions. That is, if her doctors agree that she is not able to make sound decisions in her present state. Treatment for flu, pneumonia and a UTI are all very non-invasive procedures and these things are treatable with antibiotics. Congestive heart failure is not. So, I assume that her non-treatable heart condition and poor quality of life is driving the decision to not treat the infections. Assuming that is the most prudent decision, then it is the job of Hospice to keep her comfortable - meaning free of pain and anxiety. I would definitely talk to her doctors and Hospice about her distress when being changed and come up with a better plan to keep her clean and comfortable. It sounds like you are doing everything you can for her - you can find peace of mind in that.
Do know that as the organs shut down there is a good deal of confusion. This manifests in a sort of dreamlike acting out, and often picking at covers and such. Much of this is done below a level of consciousness and pain.
As much as you CAN be there, be there, encouraging as much medication as can be given.
I am so sorry. Ask them to explain what you can expect to SEE and what it all MEANS and if they cannot you need to have them send someone who CAN.
maybe if would help fur you to break her into the clean v routine so you try it when you are there
act like it’s nothing and keep her mind occupied as you chat about other stuff
If she can understand tell her you need her wipes otherwise she will get sores and they are painful and you’ll do if fast
( even if you start with a little and work your way up)
it’s an invasion of privacy in some seats so needs to be addressed slowly and to ensure she retains some dignity
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Good luck
I don't know if there is a good answer here, but hospice should help you with all of this.
Even if your are her MPoA, if your Mom doesn't yet have a medical diagnosis of cognitive impairment, she may still be the one calling the shots. I think this all depends on what state and maybe even county the hospice is in.
I recently went through in-home hospice for my Aunt. Her team would not talk to anyone but me, as the MPoA, once my Aunt could no longer talk or move her right side from the after effects of her stroke. My Aunt had always been a nervous person and pre-worrier, so I agreed to Ativan for her (to calm her) and then morphine as they needed to touch and roll her (she was 105 with paper-thin skin and achy from arthritis). I second-guessed this decision for several days after, but have concluded there was no better option for her, as the combo of those 2 meds settled her into an unresponsive but pain- and anxiety-free state.
Just so that you know to say everything you wish to say to her before she gets the comfort meds...
I wish you peace in your heart that you are doing your best for her.