I believe my dad has some form of dementia. I'm trying to get help for him but I've run into several obstacles. First, dad gets very defensive when we tell him that the things he tells us when he is delusional are not happening. He refuses to accept that they are not real and isn't willing to discuss the fact that he needs to see a doctor. We got lucky recently and dad finally agreed to see a doctor when he was feeling so dizzy he could hardly walk.
The second obstacle I’m running into is his doctor. I called the doctor's office before we went and explained to the nurse what was going on and asked if the doctor could evaluate him but warned her that he might get defensive about it. Well, dad opened up and told the doctor about one of his delusions. He calls it "The Dark Days" He described to her how God had messed up and the sun wasn't coming out until the middle of the afternoon for two whole months. I thought surly the doctor would know something was wrong once she heard it with her own ears. So at the risk of upsetting my dad I went ahead and described how he was having delusions, was paranoid, kept losing things, was having difficulty with his finances, etc. etc.
I asked his doctor if she thought it could be dementia or if it could have been a stroke. She asked my dad to walk down the hallway for her so she could observe him walking. Dad very slowly shuffled down the hall and back for her. She then asked him several questions to test his short term memory and he answered most of them wrong. She looked at me and said "He's not that bad." She did at least agree to do an MRI to rule out a stroke. She ordered the MRI and I took dad to the hospital for the scan.
We didn't hear from the doctor after 48 hours as was promised. It took nearly three weeks of me calling and leaving messages before I was finally able to talk to the doctor's nurse. All the nurse would tell me was that the MRI looked normal. I asked if we could discuss whether she thinks dad has dementia. The nurse told me that they legally are not allowed to discuss dad's medical details with me. If dad wanted to know he could make an appointment and I could tag along. I reminded them that I have Power of Attorney (both medical and financial) for dad. Dad has also signed HIPPA document with doctor allowing me to discuss and request his medical records. She said it doesn't matter they won't discuss it with me.
So I actually have two questions. First, how can this doctor tell me she can’t discuss dad’s medical issues with me if I have POA and when she has the HIPPA forms that dad has signed?
Second, should I even waste my time with her? This doctor is a Family Practice OD. However, according to the other doctors in the clinic she’s supposedly the “expert” on dementia. There are no geriatric doctors in the town where dad lives. I can take him to another city but it’s going to be an even bigger challenge to get him to agree to it. Still, if his own doctor is unwilling or unqualified I’m worried I’m wasting our time.
Any advice is appreciated.
If this is the best this clinic has to offer for diagnosing dementia and dealing with caregivers, I suggest you look elsewhere.
(By the way, this is true of many general-practice MDs and not just ODs.)
Id get rid of that doctor and go with geriatric doctor. They specialize in the elderly.
BUT the law does not say that the doctor has to talk to family members -- it only sets standards about when that may happen, not that it has to happen.
Your parents' doctor has made it clear, and it seems to be a clinic policy, that they will not talk to you about your parents' health, period. So if you think it is important to be able to discuss their care with a health care provider, you need a different health care provider, for both of them.
A geriatrician would be the best primary care physician for both of them. Just as a pediatrician handles the health of children, a geriatrician handles the health of elders. A geriatrician is not just for certain diseases.
I can't say that I understand the refusal to talk to family members when the patient is OK with that, but I suppose the clinic can set their own policies in that regard. And the only recourse you have, I think, is to change clinics.
Based on my gut feeling and the advice you all gave me here as reinforcement I decided not to deal with her anymore and was in the process of researching which doctor would be more qualified to take dad to. In the mean time dad had a follow up appointment with her for something unrelated to his dementia. So I took dad back with the intention of not discussing anything other than the issue at hand.
The best way I can explain what happened next is to say that the doctor threw me under the bus. Dad and I were sitting in her exam room. The doctor came in and the first words out of her mouth were “Are you having some trouble with your memory?” Dad was caught off guard and said no. Then she said “Well your son says you are and he wants to stick you in a nursing home!” Well, dad wasn’t the only one that nearly went into shock. I had never said any such thing to this doctor or any of her staff. My jaw dropped, but before either of us could respond a nurse knocked on the door and told the doctor she had a phone call. Without hesitation the doctor left the room and it was nearly 10 minutes before she returned. She just left us hanging!
All sorts of thoughts went through my mind. I was expecting the worse. I was suddenly worried that dad would no longer trust me or the doctors. I was also concerned that dad would be angry with me and I’d lose ground on the things my wife and I had accomplished with making his life easier for him.
When the doctor left the room dad laughed and said “where did that come from?” I answered that I honestly didn’t know why she did that. He then started telling me all the reasons that his memory is just fine. I listened to him, told him I understood what he was saying and assured him I was trying to find him some help for the things he had been experiencing.
When the doctor returned she started right back in on the topic of the nursing home. She point blank told dad he had had a stoke and had dementia. (something she would neither confirm nor deny, nor discuss when we were last there). She was so abrasive and so unprofessional that even I began to argue with her to defend dad. I finally said “I’ve never said I want to stick him in a nursing home. All I’ve asked you for was for a diagnosis so we can determine what is best to make dad feel better.” I said “short of that, if you can’t help us then I need to take him to a geriatric doctor or a neurologist”. At that she said “Oh, well if you want a referral then I can give him one.” She mentioned one of the neurologists at the medical center I had just been reading about so I said that would be fine and we left.
Now here’s the silver lining in the dark cloud. To my surprise dad didn’t get mad at me. He acted like it was no big deal at all, even to the point of laughing about it. It was at that point that I realized he must already know something is going wrong with his mental state. And he may be accepting that he’s needing more help than we can give him at home.
Anyway, thank you all for your advice.