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Hope4miracles Asked December 8, 2023

How can I change the way hospital doctors and departments treat my mother?

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?

BarbBrooklyn Dec 8, 2023
All your mom has to do is sign a HIPAA form for you be able to talk to doctors and receive information. She cedes no control in doing that.

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.

lealonnie1 Dec 8, 2023
Your mother has dementia, per your profile, and needs an advocate with her at the hospital to speak FOR her. She cannot retain information and properly answer questions, nor can you rely on what she's telling you was said to her. An elderly person with dementia who's alone at the hospital will struggle bc everyone is in the dark, including the staff!

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.

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funkygrandma59 Dec 8, 2023
Welcome to todays healthcare system, especially for the elderly. It's a racket any way you slice it, and it's the patients that suffer because of it, again especially the elderly.
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.

AlvaDeer Dec 8, 2023
Ask to speak to social services.
You need much more help than an international forum of caregivers can provide. We have no answers for the complexity of your situation, imho.

Beethoven13 Dec 13, 2023
I have been in your shoes with my elderly father. He had a stroke and can’t communicate and my elderly mother has moderate at least, cognitive decline. I agree with Lealonnie’s reply. One thing I did once was refuse discharge or transfer to snf. He stayed another 24 hours. It gets their attention and doctors and case managers appeared hourly to answer questions and push us out the door. It’s not something I would do often or lightly, but if you really feel your mother’s symptoms have not been properly evaluated, say you are not comfortable taking her home with ongoing symptoms that she presented with. Emphasize the recurrent presentations to the emergency department. Sometimes it helps to know what you are wanting. More tests? Relief of symptoms? a more precise diagnosis and treatment plan? home health nurse visits a couple times a week so they can keep a close eye and document what you are seeing.

NeedHelpWithMom Dec 8, 2023
This certainly sounds like a nightmare. I am really sorry that you and your family are in this situation.

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.

JoAnn29 Dec 8, 2023
Does she have a person assigned as her healthcare proxy? If so, get a doctor to declare her incompetent to make informed decisions. Then u inform the hospital staff that Mom has dementia and her Medical proxy has been invoked. They are to talk to only u. If ur going to the same hospital all the time, try another one.

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,

ThePatientOne63 Dec 13, 2023
Advocate, advocate, advocate, for mom! Speak up, it's our right as patients and for you as a caregiver for your mom. Ask to speak with the Patient Advocate, the facility should have one. Request a goals of care meeting with her MD. Tell the MD it is important you are present when any medical decisions are going to be made.
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.

Llamalover47 Dec 13, 2023
Hope4miracles: It is imperative that your mother has a patient advocate with her at the hospital always as she suffers from dementia.

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