I took mother to her six month check up with the neurologist this week. Her weight is up, thank goodness. She was behaving fairly well on the day of the appointment. Prior to that she was depressed and angry. But that’s not why I’m writing.
During the appointment, the neurologist looked at her and asked her if she had any hallucinations. I had emailed the doctor about an isolated, hallucination event. It hasn’t repeated, so I haven’t worried too much about it. The neurologist also asked her about depression or if she needed help with daily activities. Of course, mother responded that she’s not depressed and that she needs no help with daily activities. She says she takes care of things on her own. Well, that’s not exactly true, as I take care of all business and bill paying, all medical appointments, medicine, management, meal delivery, etc. etc. etc.
Why would the neurologist look at the patient who has been diagnosed with Alzheimer’s and ask her if she had had any hallucinations? why would she ask her if she was depressed? Maybe I’m the crazy one.
She went over information about the new medication that has been approved. It went right over her mother’s head. She went over information about the new medication that has been approved. It went right over her mother’s head. Mother's response was she really didn’t need it because she doesn’t have anything wrong with her. This didn’t phase the doctor.
I’m rambling a bit. it was truly a frustrating day. I took mother to lunch after the appointment, and we met a friend of mine. Mother is definitely a show timer. After lunch, my friend commented that mother was in fabulous condition, and I was just overreacting to her memory issues. She also said that mother had commented a few times that ‘my daughter doesn’t let me do that.’ My friend thinks that I am being cruel. Actually, my mother uses me as an excuse. I’m tired of it. I am so very sick of all of it. I am just about at the end of my rope. I’ve had to learn acceptance and patience. I keep rolling forward, and I’m just waiting for the wheels to fall off.
Your job is to send him an email a few days before her appointment with your concerns, what you've seen, etc, so when she comes in he's already up to speed on what he needs to know.
The medication instructions were given for your benefit as much as hers, so make sure you take notes when in appointments with her.
I used to sit behind my mom at her doctor's appointments. When she'd answer something incorrectly or not honestly, I'd shake or nod my head so the doctor knew what the truth was. If she just said she was fine, I might say, "Didn't you tell me you had trouble breathing again yesterday when you were going upstairs" which told the doctor what her issue was (breathing trouble), when it happened (yesterday), how frequently (again), and when she was doing what (climbing stairs). The doctor would take it from there.
It's amazing how much you can convey to a doctor in code. 😉
have happened since his last appointment and the doctor reads them to himself
in his office before he speaks to my husband It has helped a great deal. Your
right about the person that has Alzheimer's is usually in denial of it so it is best
to do it this way. Hope this helps you. Take care.
Tell her to come be a fly on the wall for about a week and then see if she changes her tune. You know that she would change her views in a heartbeat!
JoAnn29 below has given you a good suggestion for next time your mom has a neurologist appointment.
Good luck to you.
Lealonnie1
Weds 7/26/23
12:43pm MST
1. Had a hallucination 1x on 00/00/00
2. Still able to do basic ADLs
3. No longer can handle check book
4. Showtimes
And so on. And your friend, she has never cared for a person who has Dementia. If you going to get thru this, you need to let things roll off your shoulders. Don't take what Mom does or says to heart.
Her world is shrinking day by day. Don't rush the process.
Can you imagine for a moment, going to any doctor for your own appointment, and the doctor speaks only to the person who brought you?
No matter what your awareness is, no matter what stage your cognitions is in..the doctor needs to speak to the patient! At the very least, it is a medical-legal contract between the patient and the doctor, which also protects the patient's rights and dignity.
Sorry this bothered you, but I think you may have misunderstood what was going on with your mother's appointment.
However, I am glad you were there, listening, taking notes, being an advocate for your Mom. It is a chore with very little acknowledgement for your efforts.
Are you the DPoA for your Mom? If not, is anyone?
Are you her Medical Representative? If not, is anyone?
If the answers to the above are no, you are neither, then this may be why the neurologist is deferring to your Mom for all answers: since if you are not her M or DPoA or MR, the doc cannot legally share your Mom's private medical information with you without her being present and consenting. Even if she's diagnosed with ALZ. Where I live the docs won't necessary consider medical info you pass on to them about an LO if you are not their MR.
MR is a HIPAA form you request and then write in your name and have your Mom sign it and submit it to the receptionist/check-in desk. This is necessary at every doctor who treats her, even within the same clinic/practice. It has to be renewed every year.
Please provide more information so we can give you the best guidance possible.
Keeping your mom's doctor informed is the right thing to do. your doctor can take the information you provide and balance it with the responses that mom gives.
You say that prior to the appointment mom was depressed and angry. The fact that she wasn't on the day of the appointment is something the doctor should know.
Honestly after an initial diagnosis I do not feel that a Neurologist is necessary. The PCP can prescribe medications to slow the progression if that is what the Neurologist is doing.
To put someone with dementia through more testing, scans makes no sense as it will not change the course of the disease. And as far as the medications to slow the progression they will not work forever. (the tough decision is to know when they can be discontinued)
"Nothing."
"He's an idiot."
"I don't know."
I will be happy to never hear "I don't know" again myself.
My ex used to be my "go to" guy until all this happened 2 years ago. He was smart and responsible. He was always groomed and meticulous. On the ball.
I don't know who he is anymore. Not the same at all. It makes me feel so exhausted and hopeless. He sucks the oxygen out of the room he's in. I have literally saved his life and now stuck with this.
I will make sure nobody gets stuck with me.