Need to know how to approach the doctor

KristinaB

KristinaB

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My mother has an appointment with her primary care doctor this week. He does not believe there is anything like ICU-induced Dementia. I have been finding all kinds of info on the internet from WebMD and other medical places. Mom also has the beginnings of liver failure and so we have to be careful of her medications. She has asked the doctor for some kind of medicine to help her with her cognitive functioning during the daytime and he won't giver her anything since he doesn't think there is a problem. Keep in mind, that we only got him after we moved to Florida and he is relying on the medical files sent from Missouri. He has all of her medical records for the last 35 years. He has advised us to not worry about her cognitive functioning and concentrate on her liver and possible surgery. She is refusing any treatment for that. (she has Hepatitis C and now cirrhosis of the liver as a result.) She feels that at 74, she does not want to worry about her liver issues, but wants to see what she can do to help me deal with her in her declining health and declining cognitive function. She does not care if it will hurt her liver, she just wants to be able to concentrate and not be confused as much. She gets up at 7am and is in bed by 10 pm. During those hours awake, she is confused for all but 3-4 hours but in 20-30 minute increments. It get very stressful and she's tired of making things harder for me. My brothers want nothing to do with her and are leaving everything and all decisions up to me. Her 2 brothers are planning on making visits to Florida from NJ and IN to see her this summer as a surprise.

What I was wondering is: Since the doctor is in denial about ICU-induced dementia (her doctor in MO diagnosed this right before we left), and I plan on taking him all the info I have, How can I make sure he understands what our days are like so that he will help my mother? The last time we were there, he was only concerned about scheduling and upper- GI series and bone density scans and all the female tests. She had everything done in MO, but the doctor wants his own tests. Mom is refusing and I am backing her decision. She feels it is an unnecessary expense for her Medicare to have to cover.

Any ideas anyone? Her appointment in Wednesday of this week. Thanks for any suggestions.
 
Be very clear and concise in explaining a typical day and the frustrations you and your mother encounter. Also, keep in mind, there is a thing known as autonomy when it comes to medical care. Your mom has every right to request treatment she feels is in her best interest, and also to refuse any treatment she does not want. While the doctor may think the liver is the important issue, your mom thinks otherwise. She has the right to make that determination.
 
jillio said:
Be very clear and concise in explaining a typical day and the frustrations you and your mother encounter. Also, keep in mind, there is a thing known as autonomy when it comes to medical care. Your mom has every right to request treatment she feels is in her best interest, and also to refuse any treatment she does not want. While the doctor may think the liver is the important issue, your mom thinks otherwise. She has the right to make that determination.
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Thank you very much. She does know that the liver is not worth worrying over as it is now almost 30-45% diseased and she has too many other issues to worry about. She feels she has lived a full life. She has outlived her husband by almost 10 years now and she has seen all 6 of her grandkids. We all married late in life. Her main wishes when she was diagnosed originally, was to see all her grandkids graduate high school, 3 have done so, 1 graduates this year and the other 2 are mine, 1 of whom will not graduate and the other will be taking a GED due to homeschooling. She wanted to move back to Florida and see the ocean again. We have done so. Now, her only other wish is to be cremated and scattered at sea like my father was in 1991. We have arrangements made with friends and the plans at the funeral home for cremation services.

I was advised to make sure I get a power of attorney for her on medical and financial before she loses all her lucidity (is that even a word?). We will get that done this week. She has agreed. We will also make sure the doctor is aware that when the time comes, she will use Hospice care at home with home care nurses. MIL has agreed that is the best course as FIL used the Hospice at home.

Thanks for help, and I will let everyone know how the appointment went as far as the doctor respecting mom's wishes.
 
Best of luck on your visit. I'll be thinking of you.
 
It is time to find a new doctor for your mother! Did you check this doctor medical record? Years ago my mom saw an ad in the paper for a doctor that made house calls . The doctor took my mom off all her med'd and told she some horrible illness and gave mom new med's! The quack had no idea what he was doing and made my mom very sick! He was not allowed to pactice med's at a local hospital! I really think you should check your mom doctor out to be on the safe side!
 
whatdidyousay! said:
It is time to find a new doctor for your mother! Did you check this doctor medical record? Years ago my mom saw an ad in the paper for a doctor that made house calls . The doctor took my mom off all her med'd and told she some horrible illness and gave mom new med's! The quack had no idea what he was doing and made my mom very sick! He was not allowed to pactice med's at a local hospital! I really think you should check your mom doctor out to be on the safe side!
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He was checked out totally and recommended by her doctor in Missouri. That's what's so puzzling. If we don't have a satisfactory visit, we will consider changing doctors, but it will be a hassle with her insurance. I called them today to let them know that I was coming armed with information and they said they will be happy to get it and the doctor assures me that he will pay attention to our requests. He has gone over all of her records and is prepared.
 
Your mom sounds like a very loving and strong woman. I went through the same thing with my father, only without the dementia. His cancer returned after 5 years, and the surgeons were pushing for treatment. He refused, and stated that he did not want to spend what time he had being sick and unable to visit with family and friends.

Yes, I forgot to mention the medical power of attorney. That will be necessary, or the docs will make the decision they want to make. Might also want to make sure there is a DNR order in her medical file.

Let is know how it goes.
 
I will let you know.

I got a call from their office today verifying the appointment as they always do. I warned them that I was prepared in case there was trouble. The nurse mentioned that they had finally received the rest of my mother's medical file from her doctor's in Missouri. It seems they sent it out in three different packages due to the sheer volume. It was in the 3rd package, that the CD or DVD of the file was included as well. It has all of her x-rays and all the visual stuff from her tests and procedures. The nurse did mention that I was right all along and he understands what we want and is ready. We shall see.

Appointment is in the morning tomorrow. Right now, mom is trying to wash dishes. I know I will have to go back and redo them, but it makes her feel wanted and useful. Ah well - such is life.
 
Hope the appointment will go smoothly.

Good idea to get yourself appointed as your mother's power of attorney for medical issues as well fiancial etc. It's recommended. My aunt was made one when my grandmother was diagnosed with dementia.
 
Okay -

We had the appointment and the doctor listened to everything we had to say. He did mention that while he did not fully agree with our decision, he would abide by our wishes. He has marked my mother's file as a DNR. He gave her prescription for Aricept for her dementia and ordered blood work and a CT-scan. She got the blood work done after the appointment yesterday and there is something not right, so on Monday she sees a specialist for more blood work. She had a CT-scan this morning. He want's to check on the brain pathways for the dementia or something like that. He has cancelled all of the other tests against his wishes. He now understands that we are just making her comfortable and not fixing or mending any issues. He feels it is against his "code" and I understand, but he also understands our position.

Thanks for all the support and help everyone. I will be getting the power of attorney forms taken care of in the next week or so, as our local library has it online, so I can print it out and then get everything notarized.
 
I'm glad that you have an understanding with the doctor. He sounds like a good, caring doctor. It's hard for some doctors to deal with end of life decisions since they are trained to do everything possible to heal a person. I'm glad that you're making sure that your mother has as much freedom and dignity as possible. You're a good daughter. *hugs*
 
KristinaB said:
Okay -

We had the appointment and the doctor listened to everything we had to say. He did mention that while he did not fully agree with our decision, he would abide by our wishes. He has marked my mother's file as a DNR. He gave her prescription for Aricept for her dementia and ordered blood work and a CT-scan. She got the blood work done after the appointment yesterday and there is something not right, so on Monday she sees a specialist for more blood work. She had a CT-scan this morning. He want's to check on the brain pathways for the dementia or something like that. He has cancelled all of the other tests against his wishes. He now understands that we are just making her comfortable and not fixing or mending any issues. He feels it is against his "code" and I understand, but he also understands our position.

Thanks for all the support and help everyone. I will be getting the power of attorney forms taken care of in the next week or so, as our local library has it online, so I can print it out and then get everything notarized.
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I am happy to hear that this has all worked out the way it has. Your doctor is a good one, to be sure. Unfortunately, I don't always agree with the decisions my clients make, but as a professional I also have to understand the concept of autonomy. It is my job to work with them whatever decision they make, not to make decisions for them. Sounds like your doc does the same.

And I agree with Sallylou. You are a wonderful daughter.
 
Good to hear that the Dr listened and did what your mother requested.

Now your mother can be at peace now that she has people who listened to her and will not force her to do things she doesn't want.
 
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