You need to get him diagnosed if he isn't. At the early stages the drugs do help. All of our LOs react differently and they all seem to need slightly different drugs at different times. I'm not sure but I would expect that the version of dementia you think he has might show up on a Cat scan or MRI.
Go over to the Alzheimer's Association discussion forum:
http://alzheimers.infopop.cc/eve
and click on the "Caregivers Forum".
One of the women who posts there is an RN, and her mother has FTD, and she posts a LOT about it, and the differences between AD and FTD. Use the "find" button in the purple band across the top of the page, and enter FTD.
As Starling said, it's very important to get your husband's problem diagnosed, and correctly. AD medicines are not helpful for FTD, and may make symptoms worse.
Are you living in Orange County, California? If so, you are already living in "the big city." On the other hand, I've lived there and the health care is rotten. And I doubt if LA or San Diego is any better.
Do you have a family doctor? Does your husband go in for any kind of regular visits? Does he have any medications that need to be followed up on? Can you talk to the family doctor about all of this? Can you present the idea of going to the doctor as something BOTH of you need to do?
That was how I got the legal paperwork done earlier this year. BOTH of us needed new wills, living wills and DPOAs. So BOTH of us got them. Do BOTH of you need to go and do a full annual physical?
I was wondering why you are trying to diagnose your husband yourself. Now I know why.
By the way, although I have nothing to complain about as far as the medical care goes in Pennsylvania where I currently live, I had to do all the education about this disease myself. That was also true about every medical condition I had while I was living in California including hepititus, low thyroid, several kinds of cancer and my knee problems. I did get help with researching cataracts when I had surgery last year from the advice nurse my current insurance company keeps encouraging all of us to call when we had questions, but in the end I did better going to the web sites she suggested myself than with the calls I made.
The truth is that no matter where you get the information, YOU have to read it. No doctor is going to prepare you for what is going to come next. They might lead you to places where you can get information if you ask, but they are not going to spoon feed it to you. The gentleman you quoted has expectations that just aren't realistic. Of course the doctor isn't telling him what is going to come. I wouldn't even expect that.
longyears - As has been said before - you simply must find a way to get a diagnosis. I had a friend whom we all figured had AD. She ended up having to give up independence, her home, and lived in a care facility. Five years later it was discovered she had some sort of blockage in her neck artery, which they fixed and her memory returned. Unfortunately, she didn't get her five years back. So, please somehow get to a qualified medical facility ASAP.
longyears, I think I know who you mean by the man at the Alz Assoc forum who says he has to learn from the forum. He lives in Melbourne FL, and if he had known what to look for, the help is there. Others have been posting to tell him about where to go.
Many, many doctors, including neurologists, don't have a clue ... including the neurologist who diagnosed my husband. She specializes in migraines, and really, really, REALLY does not want AD patients. Well, who can blame her? -- they're not the most rewarding patients to care for. I'd like a little bit more empathy, maybe even a human bedside manner, but I understand why she wants my husband to go to another doctor. (So do I. His PCP is a gentle, compassionate soul, and certainly can do everything that needs to be done right now. If we need more, then we'll seek out another specialist, but this time, a truly qualified one.)
But many blessed doctors do care enough to specialize in AD and related mental / neurological disorders, and they can indeed help you. Look for a memory clinic or an Alzheimer's Disease Research Center (ADRC). They offer all sorts of help, you as well as your husband.
While my husband's neurologist was hopeless, we have an ADRC in San Diego, and they are good people. We've learned a lot from them about the disease, they have a social worker who specializes in the resources available to AD patients, and we're in a clinical trial. (I'm not about to go down without a fight!)
Yes, a drive that long with an FTD patient doesn't sound particularly appealing, unless you can come up with creative "reasons" for going. Maybe, if you manage to locate a good center, you could have the first visit just be you, by yourself, to discuss the symptoms you've observed, your concerns, and what they think they might be able to do for you. Then, if you're convinced the drive with your husband might be worthwhile, you and they could figure out a way to coax him there. A visit to the big city for something he likes -- a special meal, theater, museum, I don't know. And fit the visit to the center in there somehow.
Starling, it sounds like you could hang out your shingle as a doctor, yourself, after all the self-education you've had!
But what you've said is true, whether or not there are good medical centers for AD patients -- we, ourselves, have to take the initiative and go after the information. We have to look in a lot of places, and put it all together ourselves. Nobody is going to spoon feed us, you are so right.
Sunshyne, I have hung out my "shingle" as someone who can research almost any disease on the Web and find information from places where you could trust it. And I did a lot of it for other people well before places like Web MD were useful. WebMD actually existed back then but was mostly useless.
I located early American Cancer Society web pages when I was researching the cancer, so I knew a lot more about my situation than my doctors realized I knew, including that what was wrong with me (after I saw the radiology report) was actually an early stage of several different cancers. The entire thing was operable and I didn't need chemo or radiology, but when I went under the knife, I was potentially the sickest patient that doctor had ever seen. We got very, very lucky. It was also true that without the surgery I wouldn't have lived long enough for the cancer to kill me. Cancer isn't the only reason to have some kinds of surgery.
So when this time came around I went looking for information. I started at a much less useful support group site than this one, but someone on that site sent me here and some Google ads on that site sent me to other very useful places including both the Alzheimer's Association and the Alzheimer's Society. And links from here have also sent me to additional very useful places on the Web. If you are open to looking, the information is there, on the Web, in books and probably in magazines at the neurologists office. But you have to be open and also follow the links.
I started researching AD on the Web way back in 1996 when I figured that might be what we were dealing with. I always knew more about EOAD than any doctor we ever saw and all of them, God bless 'em, were the first to admit that they didn't know a lot about the disease as it would affect someone who was only 50 years old. They respected my opinions and I shared many websites and anecdotal information I picked up from people in our same situation. The doctors were always wonderful about asking about my mental and physical condition and treated me as a valuable member of the "team".
The neuropsychiatrist realized that the man he saw for 15 minutes every three months was not the man that I lived with 7/24. I always prepared a synopsis of symptoms and behaviors before every appointment so that he saw it before we entered his office.
Thank goodness we have all the information so available today......
How did you get your notes to the doctor before the appointment? I've been doing what you just said, and want to share it with my husband's doctor. Before the appointment would be best, but I don't know how to manage that properly.
Starling....I always gave it to the receptionist as we signed in and I told her to clip it to the front of the file folder. Others have faxed it to the doctor's office before the appointment.
Our neurologist asks that all of my concerns be faxed to him a few days before the appointment, so he has the time to familiarize himself with what has been going on. He is very perceptive, and he can size us both up after a few minutes - having the faxed information, and then talking to both us, pretty much tells him what he needs to know - if I'm over reacting; if Sid is declining and in what areas. And he has the mini-mental results from the test given before he even sees us. Faxing works very well for us.
longyears, I was wondering how old you and your husband are. I haven't been able to locate this information. Please share under "ages," if you want to.