Moorsb, I spoke with DH's Neuropsychologist at Baylor College of Medicine today about the notice I received to come in for his fifth day of clock drawing, story telling, etc. I explained that this test is so demeaning to him and he is so upset afterward it takes several days to get over it. I asked if the 4-5 hour test could be either skipped or simplified in order to make it less traumatizing for him (and me). I was told that if he refused the test, his Neurologist would no longer work with him. She cannot do her job if she doesn't know how far along he has declined. OK, I scheduled it. This is absolutely the last time I am going to get my husband up and dressed at 6 am to get him down to the Houston medical center by 8:30 to be tortured all day. GAD! What did I just say. I don't want to subject him to this even one more time.
Last September, he scored ELEVEN on the test for frikkin' sake. He has gone down considerably since then. How much lower can they score until the doctor stops insisting on more testing. I will say this. I saw him get so frustrated, he refused to "play" anymore and just said I don't know, I don't know, I don't know... which obviously affected the overall score. Still, He won't score 11 this year, I'm certain.
My thinking is that I want to get a new doctor. As soon as this house sells, we're moving somewhere away from Houston. I don't want to get established with another doctor and leave within the year. I'll play along until we move and then tell them Sayonara.
I think you should get a new doctor. For right now, just call and say he's sick.. so you haven't refused it, in case you might want to consult her again before you get moved.
We are fortunate to have good insurance backing up Medicare....but still! Have you all seen what the doctors charge for those tests???? This doctor charged over $4000 last year. That's insane! My diagnosis of the entire process without an MMSE.
My wife agreed to be part of a Study. She was given a brain scan with a new hi res MRI. I think they can see more detail and see the progression. I guess she is going to drop out of this study. It is the verbal testing that she can not endure. The problem is she gets very frustrated when she does not know the answer to some simple questions and it just drives home the point that she is loosing it. I ask the doctor if he could pause and tell her that he is going to ask the question again and see if she can remember any more detail. They just keep repeating it and is just seems cruel. The doctor told me that they need to do the test the say way to each patient to keep the data meaningful. I think this is too much to ask someone to do.
I didn't ask, or question the need. I flat out demanded Lynn not be tested anymore! I agree Nancy, once you fall below a certain number, there is no need for these tests to continue. Lynn was in the single digits. Enough was enough! His doctor balked, but too bad. Had he said he would not continue to treat him, I would have said fine with me! By the look on my face and the tone of my voice, he knew it too. There reaches a point where no further testing is needed, it serves no purpose other than to frustrate our poor loved ones. *sigh
I have an idea. Will ALL OF YOU come with me to see his "oh! so famous! world reknown! brilliant neurologist ...who has the personality of a dishrag. She glares at me and I feel like a worm. I am NEVER that intimidated by anyone, especially doctors. We have doctor relatives, doctor friends, and I've seen them in their underwear. But she is one cold fish!
Like Phranque, she too, is too big for her britches! I guess if truth be known, I'm a little afraid of her. Last year, she accused me of refusing to come in when they scheduled an appointment. I couldn't imagine myself doing that and I said so. She glared at me and said in deliberate separated words "YES ---YOU---DID" When I got home, I checked the calendar for 6 months earlier and noted that I had entered the appointment, and then her nurse called and cancelled it since the Doc was going on vacation to Mexico and my notes said she would call later to reschedule. .......... Darn it! Why didn't I remember that in her office. I was frozen to my chair like a naughty kid who skipped school and was caught.
Nancy dear, I am hoping I don't offend you... but goodness, why would you continue to go see this doctor who is clearly a royal pain in the azz and is abusive in her demeanor? (I had to work really hard here not to cuss a blue streak lol) Please consider changing doctors for your DH and you! You just don't need her crap!! Do you live anywhere near me, I would gladly go with you! :)
Testing is sometimes fine if you really need to determine what level you are at, but I compare it to giving a blind person a vision test....blind is blind...and testing will not improve it...or a hearing test....yes there are certain frequencies that you can't hear...but testing is of no value unless there can be an adjustment or treatment for the loss...How can a mmse test possibly be regarded accurate, when a person has difficulty with words, grammar, and reasoning. I see little value of the test except to keep the neurologist financially sound, and the patient is the victim of all the frustrations.
Sounds like the doctor just wants to do a wallet-ectomy on Medicare, as there can be no medical reason to administer these tests. I join the chorus: get another doctor, ASAP.
Since you hope to move soon, I like the option of calling in sick the night before or day of the test. Or just refuse. How about you PCP? Since there is really nothing the neurologist can do, is he/she comfortable treating him?
I agree with Phranque and Shanteuse. I think the neurologist is in in more for the $$$$ than for any concern for the AZ patient. Our neurologist has never insisted on any testing. For a few years we had testing done at the University of Washington AZ research center with results mailed to the neurologist, and this spring he tested in the single digits. The Center said he does not need to come back but will remain in the study with a yearly interview with me. His neurologist is very understanding and seems very concerned DH's comfort as well as mine. If at all possible, if you need refills of meds, could your pcp do it? Since the neurologist appears domineering and closed minded, I agree that a new one would be better for both of you. I like Nikki's approach!! Sometimes we just have to draw the line.
NancyB--you are your Dh's advocate. By his diagnosis he is not capable of protecting himself. The Dr. is tormenting him for no good reason. You are the boss here. Wait until there's just enough time to call in sick without penalty. If you have to, get another Dr. now, even if it means an additional change. If your PCP is willing to fill the gap, mores the better. I found a different Dr. when the one we had started pushing repeating tests and adding more. The new Dr. agrees with my view that testing will only be done if new events warrant them. And there will not be testing for conditions for which the treatment is beyond his ability to comply with. As far as I'm conncerned the current Dr. you have is committing Elder Abuse.
Maryd, Apple, Penny, Table are the exact words my husband was gave to remember when we went to IU Med Center. After we changed Neurologist, he gave him 3 totally different words, when it came time to remember the words, my husband recited Apple, Penny & Table, not the words the Neurologist had just gave him. From that point on I saw no need to this test.
Nancy, I agree with everyone who has posted before me. If it were me, my husband would be sick & not be able to attend the appointment at this time. Then I would be shopping for a new Neurologist.
My husband scored very high (nearly perfect) on the MME, then would come home and pee in the trash can, put his clothes on over his PJ's and not change his underwear for a week. I have no faith in that test. And yep.....apple, penny, table it is. Geez! The neurologist we started with left the area in June. We had one appt. with a neuro-psychiatrist and he was not a good fit for us. Based on the MME, he said he didn't agree with the Alz diagnosis.....but he didn't even have a computer in his office so that he could look at the MRI pictures which I brought with us on a CD. So at our next appt. with our PCP, DH asked him couldn't he just see him for the Alz as well. PCP said yes, since you have already been tested, diagnosed and prescribed medication, you can just see me and if something comes up we can't handle, we will find another neurologist. So that's what we decided to do.
Nancy B – When I read that the doctor said she couldn’t treat your husband any more if she didn’t know what level he had declined to, my first thought was that if she’s such an expert in this field, she should be able to tell what level he’s at from a few minutes of conversation, either with him or with you. Also, it’s not like there’s a lot of different treatments she can do if he’s in a different stage, is it?
At the beginning stages of the disease, DH went to one of the Alzheimer’s research centers. It was very beneficial in getting a diagnosis and getting social security disability approved, but after a few visits, DH and I both felt like they were more interested in getting another “case” for their research than they were in treating a patient. Many other caregivers I’ve talked to since then say they feel the same way. Now DH’s primary care doctor writes his prescription for Namenda, and that’s about the extent of what we are doing. I would never put DH through all that testing again. It was a nightmare for him, and some of the examiners are almost confrontational in the way they go about doing the tests.
I agree, Jan. My DH's primary care doctor is the only doctor he goes too - well, the podiatrist! LOL DH's son is a Neurologist and he has never suggested DH see anyone other than his PCP. I do realize this is partly because of DH's age(86); and he really has not declined very much over the past 3-5 years.
I can allow for doing the short test and along with those results AND talking with our spouse and/or us, then they should know where the person is at. Once they get to a certain score, then even the MMSE is no longer needed - just make them comfortable and safe. Doing the long neuropsyh testing is definitely unnecessary after the first one - IMO.
Art scored 23 this last time - but the doctor ordered a sleep apnea test. I think she wanted to know if he has it, it could be a cause of dropping from 26 in just 6 months. He has it and seems a little more alert and cognitive since being on the CPAP. Oh - she changes the 3 words every time so he can't memorize them. But again - I don't even remember them, so that doesn't mean alot.
When my husband first was diagnosed he was asked to participate in the long long thing, 3 hours or more, and have various MRI type things. We did it - I guess it really was a research study because they gave him $100 (nice, crisp and new) for participating. He put it away somewhere and lost it, then decided it was royalties on a book. He basically didn't want to have anything further to do with it, and when they asked for the next round I politely refused for him. His neuro now will do an MMSE if I ask him to but not otherwise, just talks to him. Very amenable to giving him (or me, if I ask) whatever might make us feel better!
Once we have a diagnosis of AD, FTD, etc., and a PCP to rx whatever drugs you think you might want, I see no need to take patient to a neuro or a psychiatrist. They cannot help them.
My husband sees his family doctor every 4 months and the podiatrist every 9 weeks. He gets 4 pacer checks for his heart pacemaker a year. We do one blood test every month for one drug, and a larger group every 4 months. Once a year we do a urine sample.
And that is it! At the stage he is in that is all that is necessary.
Opps, I almost forgot the dentist, every 4 months.
This morning saw the neurologist for "sparking" pain shooting from wrist to shoulder of hb. Been complaining about it for awhile, but today it wasn't bothering him. She examined his arm, listened to his description. Found a neuroma. (Suggested Lyrica, but nixed that when we told her his last blood workup suggested beginning kidney problems.) He & she visited a bit, then I said I had ?s. Asked her to describe vascular dementia and it's "path" as I nodded toward him (he couldn't see me). She asked if he seemed to be having more problems, I said yes. He nodded. We talked about those, then she had a np give a mme (26 ?s). Last time he scored 25. Today 14. She was shocked. Said he always carries on a good conversation. Yup one-on-one when you're up for it, good. He didn't know day, month, year, season. After the np gave her results she came back and asked him the year. "I have no idea." She said you're such a jokester and always "play" with us, I told the np I thought that's what you were doing. She said to stop the Aricept and started Exelon. Thankfully, he's open and unoffended by any conversation about his dementia--at least in the doctor's office:) Sorry for such a long "comment." Guess this is my journal entry for the day.
Yes, she did. They were really for "his" benefit; I asked because I wanted him to hear them from her. Reading threads here has really been my education--and books recommended.
Geez, Zibby, I guess the drop in the MME certainly got the doctor's attention. That's such a shame, but good that she finally gets the real picture. I hope the change in meds helps.