DH had his appointment with the neurologist yesterday. Last night he had his first 25 mg Seroquel pill. This morning he had his second (this neurologist wants him to go on them twice a day now, rather than work up to twice a day over a week which is what his PCP wanted him to do). This neurologist is the one DH saw a year ago and who told him then that he has MCI. He told him the same thing in yesterday's appointment, saying his tests from a year ago were normal. It appeared he had not read the backup material I had delivered to his office a few days ago, ahead of the appointment, which detailed his behaviors. In it I wondered if DH had progressed to FTD. Today, the doctor said DH's anger is due to frustration due to his not handling getting old well. DH agreed. Again, I came away with the feeling that the doctor had not read my backup materials. I asked, "What about driving?" The doctor asked if DH had had any tickets or accidents. We said no. So the doctor said he could drive. Whew. I feel negated. The doctor did say, about DH's anger, "You wife has to put up with it." That's sure true.
Hanging On--I'd think about getting another Dr. You are the 24/7 caregiver. You know more about your DH and his behavior than the Dr. who saw him for what?--15-20 mins. Your notes and questions were ignored. Plus, if your DH drives and has an accident, do you believe he could handle the aftermath--Police report, etc. What if there were injuries to him--others? The Dr. isn't the one in danger of losing his shirt if that kind of thing were to happen. The DR. explains away your DH's anger as frustration because he's not handling ageing well. And..."Your wife has to put up with it." ?????????????????? Yet, he prescribed the Seroquel to treat the frustration/anger?
The biggest thing my DH's Neuro[Psych Dr. said at our first appointment was that I (24/7 Caregiver) was the most important tool in his arsenal for taking care of DH. He listens and asks me. He talks to DH, asks and listens, but that is more than anything observational. We are a team taking care of DH. You need to find that.
I agree, Carosi. I was negated. DH did say a few minutes ago that due to how he feels from taking just two of those Seroquel, last night and this morning, he wasn't going to get behind a wheel to drive. That showed sense. I had hoped that this doctor would agree that after reading my backup material I took him, that maybe dh had progressed out of MCI and into probably FTD. He sure showed some behaviors in this past year that were off the wall. I'm going to ride things out for a while here, and let the Seroquel do it's thing, and regroup.
DO Not, I repeat, DO NOT hesitate to change Doctors! They are Working for YOU! When Jim's Dr. told him tha FTD was "No Big Deal", I fired him. I went out to the nurses station and asked to see the other Dr. She was a joy to talk to, understanding, a great listener and very compassionate. She HEARD both our concerns, addressed them, made med changes and ordered some test. All in one visit!
YIKES! I agree with Susan and Carosi - FIRE HIM! Find a neuro who is a specialist in memory disorders. Not all neuros handle AD, FTD, and other dementias.
Ditto here also. Change Doctors before things progress any further. Our pcp is very sympathetic to me and understanding. I asked him to take over DH care and he has been doing so. I haven't "fired" the neuro but we haven't been there for 6 months. I took him to a Physic/Generatic Dr. at a major University Hospital earlier this year and she did a short MM test on him. Just a few questions you all know about. Plan to take him back to her next spring.
I understand how hard it may be if your doctor has been your friend/doctor for decades, delivered your babies, cared for your Mother. I'll bet that is not the case. Dr. Marcus Welby was " a dream doc..but he was also fiction". I have become the Mother in our situation, and I have made it a point to TALK to the doctor, either by phone or in person, when we were being diagnosed initially. I considered it a "family disease" and (initially HE) (Later SHE) had to hear why I was concerned and how he was. Eye to eye, nose to nose, toe to toe. It takes an additional appointment, but it was definitely worth the visit. I was in the denial, fighting, angry stges back then (as a grieving caregiver) and I needed to be heard. Part of the visit was to convince them something was wrong and part of the visit was to convince them it probably was NOT Alzheimer's. My visit helped us both see the big picture and we worked as a team. As years have passed, AD has progressed and the visits are still the 3 of us, but the in depth questions are posed to me since he cannot answer.
WE finally bypassed the neuros after all the testing and put our faith in the PCP, who's a geriontologist. He listens, treats DH with respect and I believe hs is the very most diplomatic person I've ever met in my entire life.
When DW first developed symptoms of AD I took her to a neurologist who is supposed to specialize in the disease. After the 3rd visit I realized he did not seem very interested in her and was not doing anything. I then kept her with her PCP, but at each visit could not get her (the PCP) to discuss the AD. All she dealt with was the hypertension and diabetes. After several visits where I tried to bring up the AD, she referred us to a colleague of hers with a special interest in AD. He said he would take care of the AD, but not the DM and BP. Now we had to take her to 2 doctors, each a 30 minute drive. At that point I switched her care to a PCP a 5 minute drive from us who is willing to deal with all the problems, including checking on me (although she is not my PCP). Since there is not much that can be done for AD, and since she does not need mood-altering drugs at this point, this arrangement is working out well.
The neurologist DH was seeing left the area. We did see a neuro-psychiatrist once that his daughter (RN) recommended, but he was not a good fit for us. DH asked our PCP if he could do the follow-up on his AD as well, and he said yes and so we are seeing PCP only now. If anything should change, we can always find another neurologist if needed.
Thanks to all for the good suggestions. I'm going to sit back and let the dust settle. I really wanted him on Seroquel. That got accomplished. Now I want to see how he acts while using it. Whether it calms him down on the anger so I can stand it. If that will do it, then I don't see the point in getting a further diagnosis at this point, even though I originally went into that neuro appointment with that also in mind. I've calmed down from that now, thinking maybe this is a blessing in disguise, by just having the Seroquel for now. I think that it will take care of the matter for now. Thanks to this web site, I know the things to look for; ie, I will be watching him for further decline into FTD, even more than I think he's doing now. When I see another big dropdown, decline, I will then take the next step, if necessary. As for the driving, I'm end running him more on it, even though I was doing 95 percent of the driving already. When it comes time next summer for his license to be renewed, I'm going to flat out refuse that this be done. If need be, I'm going to have my daughter chime in on that, also. She is agreeable. He loves her.
I actually got ANGRY when I first read your opening post. Oh, how I remember the frustration the first time I brought up DH's problems with "His" doctor. Somebody correct me if I'm wrong, but it was the middle, and upper age MALE docs who poo-pooed "ME" and defended DH. I sometimes wondered if it is those docs of the same gender, or same approximate age that are reluctant to address dementias with their patients.
It was finally a younger female family practitioner who heard me when I casually brought up the subject during one of DH's routine appts. She never questioned me. Didn't bat an eye. She just looked DH straight in the eyes and said, "Paul, are you having some problems lately with your memory?" She sensed him waffling before he admitted that he does get a little forgetful and has had trouble finding his way around. She then said, "then you don't mind that we give you a little exam (the MMSE). This is normal that we give this exam at your age. Then we will do blood work to see if there are other reasons." He had a tendency never to argue with this lady doctor....I don't quite know why that was. Afterward she came back in the room and straight up told him it is "probably Alzheimer's in early stage, but starting medicine now will help to delay its progression." He agreed one hundred percent and said, "that sounds good. I'll take the medicine. Yeah, I sure don't want to get that." Now outside the office, whenever discussing it with me DH would tell a totally different story. "There's NOTHING wrong with me."
Regarding driving DH's doc told him to "just let your wife drive." While DH would NEVER admit that he shouldn't drive he simply believed he was letting me drive for his own convenience.
Risperidone was our total life saver. Seroquel will probably be that for you too. Just have to try it out and see which one works. What works for one isn't always what works for another. I hope the doc (or the new one...LOL) is open to changing it for you if you don't see positive results.
Thanks, New Realm. I, too, am hoping the Seroquel will take care of the situation, so that I don't have to go through the dance of dx and testing, etc. But I will, if I have to. I'm just trying to ease on through this. He's working on his 80th year. If the Seroquel will dampen down his acting out, so that living with him is palatable (sp?), then let it go at that until something else has to be done due to further decline. I am going to talk to his PCP in December at his next regular appointment, about her handling all of the neurologist type care, rather than this doctor who blew (a polite way of saying "Flipped") me off.
Like a lot of the others here the only doctors my husband sees are his family doctor and the podiatrist. I "fired" the neurologist when I realized that the only thing he could do for my husband was give him variants of the MMSE and since he was already on 11 out of 50, that was not particularly useful. The family doctor was already controlling all medications, including the ones the neurologist started, and all blood tests. I didn't say anything to the neurologist because the family doctor will call him in when/or if it is necessary.
We also no longer see the dermatologist (he was finished with what was being worked on) or the cardiologist (who actually was perfectly content for the family doctor to be controlling meds and who made the decision that there would be no more tests outside of the pacemaker checks which continue).
Basically if they find something else wrong, they can't fix it. Better not to find out that something else is wrong.
I should clarify that my husband DID have a neurologist in the last 2 years of his diagnosis. We were referred to him after the GP had managed for almost a year and a half, tried med changes, and eventually DH progressed to the level she felt an expert should make the next moves. She made the referral and it still took 6 months to get an "emergency" appt.
Just so happens this neurologist, a late thirties/early forties lad was a perfect gem. He didn't see Paul for the original diagnosis, and not until Paul's GP had been treating for well over a year and a half. Rather, he confirmed diagnosis, ordered meds, saw Paul again in 6 months, then in a year. He was almost always accessible by phone. He would interview Paul briefly at appts, and manage antipsychotic meds. At the appts the doctor took many more cues from me than from Paul, offered me support and comfort, and I feel really blessed that we had him looking out for OUR best interests. I just wish everyone else here was so fortunate.