My mother was admitted with HF in August. She has a myriad of health problems. It is horrible the way the doctors fire questions and information at her at times when she can’t understand it. They have talked to her while sedated, after a procedure, and woken her up. She feels that the staff isn’t treating her case right, but she handles it by being a “good girl.” It’s all over her chart, “patient denies weakness, tiredness, shortness of breath, hallucinations, etc.” And none of the departments talk to each other. She was told by one doctor, she would be released that day. An hour later, someone else told her they were taking her for a procedure. There is nobody to get answers from and no one person knows her history or issues. When they can’t discover why she is having a problem. They run tests without finding anything and send her home with the problem she arrived with. 7x in 4 months. To get anyone to listen to me, I have to have her declared incompetent. She will not willingly allow her daughters to control her life. She acts like we are teenagers defying her. I’m 60. Nobody explained anything in a way she can understand. She went in with hallucinations. They couldn’t identify a cause and decided internal G.I. Bleeding was a bigger concern. This is the third time they can’t find the cause of the bleeding. Her discharge papers were signed yesterday at 9:30 am. Her discharge states: unidentified GI bleeding. Patient released pending stable hemoglobin. She left the hospital 26 hours after those papers were signed, yet no further bloodwork was ordered. No cause was suggested for her hallucinations. She has stage 3b kidney disease and when admitted was at stage 4. She was never seen by a kidney specialist. When we asked the nurses why, we were told her GI bleeding is the most important issue right now. This happens over and over and over. She can’t fight for herself. She feels the doctors don’t want to deal with her. It’s a horrible situation for an elderly person. My mom has family to try and navigate and we can’t. What happens to an elderly person alone? Everyone I’ve spoken to with aging relative has similar stories. Has anyone found a solution?
You can't change how your mother acts. You CAN however, go to the patient advocate office at the hospital and make your concerns about your mom's care known.
The goal of the ER is to diagnose the issue a person came in for and to remedy it. That's all, basically. No medical professionals understand dementia and your mother would be expected to follow up with her neurologist for hallucinations and her PCP for further blood tests.
The only way my mother was properly treated at the ER or the hospital was with me there speaking for her. Same thing at rehab and everywhere else she went. Had the medical people relied on her for info, she'd have said nothing was wrong and she was fine. Expecting clear, concise details from an elder with dementia is an exercise in futility.
But like already said if your mom has you listed on her HIPPA form as someone the medical professionals can talk to, that would at least allow you to get the answers for your mom that are needed. So I would make sure that is done ASAP.
As your moms advocate you need to bug the living sh*t out of her doctors until they do what needs to be done, because as often proven, it's the squeaky wheel that gets the grease/oil.
You need much more help than an international forum of caregivers can provide. We have no answers for the complexity of your situation, imho.
I read your profile. Your relationship with your mom sounds complicated and dreadful.
Are you your mother’s medical power of attorney? Your stepdad has his own set of issues so I don’t think he is capable of managing her situation on top of his own.
Has your mom sought out a second opinion? Clearly you aren’t satisfied with her medical team. Is it possible for her to switch to a new group of doctors?
Wishing you peace during these challenging times.
You can make appts with Specialists. Get Mom to a Kidney doctor. Her hallucinations could be caused by toxins in her system from kidneys not able to do their jobs,
It is so important to be an advocate for our loved ones, not an easy role but necessary. I also have found it's important to have 1 family representative taking the lead. Too many cooks in the kitchen becomes confusing and messages become mixed.
The harder conversation is with mom. Ask her what she wants, what is her goal? To go home? Remain where she is? What does she want? Remind her that you are there to support and care for her, as you only want the best for her, maybe tell her "let's work together mom to get you better". Talk about becoming her Healthcare POA which will allow you or whoever your family decides to speak on her behalf.
In the last two years caring for my mom, conversations with compassion and empathy, while reminding her I am here to help care for her, tends to work for best for me.