I learned through the grapevine that my father was put on Aricept and B12 after his initial visit to a geriatrician. My mother had told me the doctor said everything was "fine." I initially thought the doctor was a yahoo since my father has been showing definite signs of memory and physical decline for the past 2-3 years. The only thing she divulged was that the doc had given Dad the B12, but he has stopped taking it because it caused vivid dreams. Now she says they won't be going back to the geriatrician because the first visit "was a farce."
I am so angry and frustrated that they would keep this information from me and the rest of our family. And since no one is supposed to know anything I have to keep what I know all to myself.
Doctor patient privacy rights...
Damned if you do and damned if you don't. You let the crash and burn and then one is accused of being negligent. But you can't do anything because you aren't allowed to. Neat little set up, eh?
I tell you that long story to urge you not to keep this family secret. For both your parents' protection -- and the protection of everyone around them.
Still, it's better that if any med is D'C'ed, it's done with the concurrence of the physician.
I think your mother is in denial, but I'm wondering how reliable is the "grapevine". And how did you determine that he has Alzheimers? The best thing that could happen is that your father signs a HIPAA form allowing you to get information directly from the doctor. Perhaps you can get the form and ask him to sign it when your mother isn't present.
I think she just may not want to or does not know how to deal with your father's decline. Perhaps you could ask her if she needs assistance so you can gain her confidence.
Is your father living with your mother in IL, or is she still at home? Are there any staff doctors at the IL facility?
Maggie's point is well taken. Your father may need some protection that could be missed if your mother continues to be in denial.
Maybe it's time to go with your father to his doctor appointments; you could offer to take him to relieve your mother, but I suspect she won't agree. I don't really have any good suggestions otherwise though, as without going with him or having HIPAA authorization I don't know how you can get to his medical records.
The truth is, we think that she also was covering up his strange, paranoid and crazy behavior. You see, my Mom was the June Cleaver of all time. We lived and breathed by the "What Will People Say" philosophy.
The unfortunate thing is...with dementia Dad in charge...Mom had several mini strokes before the big one. Dad has admitted since, 7 years after her death, that he supposed he should have called 911 or taken her to the doctor or told somebody, but said it did seem important at the time. Argh! This makes me so sick and sad.
Skippy, My long rambling point is ..... keep an eye on them. The denial is sometimes worse than the dementia kookiness. My thoughts are with you...this is hard.
So look at your parents and who does what and what their mental capacity is to do those things. If your dad doesn't drive and doesn't manage their finances, you may have to wait for the emergency.
You could also approach your mom about your dad's behavior that you've noticed, to give her an opening to slowly discuss what is going on. Is this behavior (hiding problems) normal for your folks?
Then, I would consider symptoms about your dad. If I really believed the story was true and your mom is not acting in his best interest, I would confront her and him together. If I had a sibling, I might being them in to, if they were trustworthy and caring people. There's no way I would stay quiet if my dad was ill, couldn't look out for his own interests and my mom was not doing right by him. I don't have to get info from the doctor, but I could give the doctor some info. It might not be pretty, but I would see to it that my dad was protected, one way or the other.
himself, which is scary since he needs a cane or a walker to keep from falling. Both are retired college professors, so the mental decline is particularly hard to accept for both of them. They refuse to go back to the geriatrician saying the exam was "a farce." I am trying to convince them to try it one more time, or go to a different one. I do not think their primary care phys. is getting all the facts from them either, or he doesn't have enough experience with patients with Alz/dementia. I would like to have access to my father's medical info. but don't know how to accomplish that. I am thinking that the only way to proceed is to talk to my dad alone without my mother being there and plead with him to be honest with me about what is going on. It may anger my mother, but at this point I don't see any other alternative. If something happened to her, my brothers and I would have no idea what medications my father is taking or what his daily routine is. That needs to change.
Since they are intelligent people, you have to consider if this denial is part of a brain deficient on their part. If they were thinking clearly, would they be so resistant to needed support, medical care, medication, etc. That resistance could be dementia and not just denial. It's hard to say.
What proof do you have that dad has dementia? If you have actual facts such as, not taking medicine, refusing medical care, not paying bills, not paying taxes, driving erratic, repeating same stories, poor short term memory, poor balance, frequent falls, poor hygiene, won't change clothes, agitated for no reason, confused, paranoid about his money or family members without due cause, hallucinations, etc., you may be able to share that with the doctor.
If you have those things to report to the doctor, I might try some way to get him there and go WITH him and hand the doctor a list of your observations and concerns, without him knowing. HOWEVER, before you do that, you may make sure you have a signed Durable POA and HCPOA, so you can act on his behalf. If not and he's found incompetent, it will be too late to get them signed.
I have read about many ways to get them to the doctor. Some say to say you are going yourself and want them to come along. Other suggest you insist it's a requirement by social security or the health insurance company. If dementia is at work, they may resist, but normally don't have the ability to see through the excuse.
It's a tough situation. As others have pointed out, sometimes there has to be an emergency or a crisis that causes the family, doctor or social workers to step in. I hope that is not the case with you. If they would just be honest with you, maybe it could all be worked out. I wish you luck.
My mom's story is similar and heard it just about a year and a half ago. She knew she was having some memory problems so sceduled a doctor appointment which her now husband attended with her. Mom was diagnosed ten years ago married a high school boyfriend nine years ago.
The doc told Mom that she was developing dementia. Mom became appalled, stormed out of the doc's office boyfriend in tow. She called the doc a quack right to her face and told her she would never return to that office again! Heard this story when I took her now husband to the doc. He did not remember the incident, I suspect the reason is his denial at least in part, but that he may also be developing some dementia of his own.
Think about it, a diagnosis of dementia would be very hard for any of us to take. Denial is much easier for all involved. Though it is very important to recognize that preparation and siblings working together to provide emotional support to Mom and Dad is absolutely crucial! Without it now, the family will fall apart. Been there, done that!
I appreciate the input very much and hope to be able to pay it forward to someone else who is looking for answers to some very tough questions in the future!
Now we are going through this with my MIL.. looking back she has been"off" for 20 years. She refused to let FIL into Dr visits with her.. but they were both in denial.. as was my hubs. Good luck with this!
As PamZ says, dementia/Alz doesn't discriminate. It can affect anyone, educated or not. It's not their fault. I stress that over and over with my mom, who has no short-term memory. I chalk it up to the meds she's taking and remind her that she can't help it, that it's the heart meds. So we're both able to be very open about it with each other.
So maybe think about the fear (of having to leave their home, of being an embarrassment, of being dependent on others, etc) and how you'd offer them love and emotional/physical support in those areas. You could read through some of the stories on here and present one that hits home as being "true of a friend of yours" (fib), to broach the topic with your folks and how they'd want to handle it if it happened to them.