LOL, don't you just hate it when you do something they might have done. A few weeks ago I left my handbag in the grocery cart after loading the groceries into the car & didn't realize it until I got home. I had been wrapped up in so many thoughts. Fortunately someone honest turned it in to the office. My husband said, it's tough getting old, isn't it. LOL.
O.K. I concede.
One of the questions was having the doctor point to his watch & ask what it is. My husband knows what a watch is! Another was a piece of paper that has written on it close your eyes (command). He can read a simple sentence. Etc.
Today we went out to the market, etc. It's very hard for him to get in and out of the car, so he's usually willing to just sit quietly and wait. BUt today a treat: we went to a good, slightly upscale sushi place for lunch. It's the first time in 2-3 years we've been out to eat (I do bring home takeout sometimes), and he handled it beautifully. Used his chopsticks, etc. Very social and polite. Couldn't believe it's the same person who got up from an afternoon nap yesterday and went into the bathroom, furious, to take his shower and get ready for breakfast!
Now I hear him thumping around getting ready to take a nap again. We'll see what happens after THAT!
We had our first of these tests since the new meds started. The Doc really zeroed in on the political situation. My husband couldn't recall McCain's name and that apparently seemed significant...except....Garv has ALWAYS hated anything political and has always ignored all of the hoopdala before elections, so that missing name meant less than nothing as far as I could tell...told the Doc that, but..???
Did you ever wonder how many times, the doctors give the test and someone will make a similar comment and it was denial not fact? So many symptoms of this disease could be something else. The MMSE is a starting place but depending how the disease is affecting the person, the results may or may not prove something is wrong. So where is that blood test that would really show that there is a problem?
Val, but did he close his eyes? Did he do what the sentence said? My husband didn't keep his eyes closed when he was given the verbal command as part of several commands in a row. One thing at a time, yes. Multiple things in a row, no.
My husband knows what a watch is, and can even tell time some of the time, but he can't draw a clock face.
They never tried him on the counting back by 7. But a lot of people can't do that one. I believe there is an alternate for that question.
He can't remember the 3 things, or the three objects that the therapist tried him on. I really think that towards the end she was doing MMSE type things because he was not learning or getting better.
He doesn't know his address or phone number. He never learned the new ones, but I've been wondering for a while did he forget (or even never learn) the phone number and address at our California house? Because I think it is possible.
My husband has had 4 of these tests over the past 2 years. On his last one 3 weeks ago, he had a higher score than the one preceding it by 2 weeks. I think he's just got used to the questions. He even turned the table on the doctor. In the last test, the doctor asked him to spell "world" backwards, and my husband said, "E," "B," "L," "O," "G." I noticed that it took the doctor longer to figure that out than for my husband to come up with that response. But all in all, it is a tool for the doctors to use. And the last 2 tests, in spite of my husband's higher score rated him incompetent to handle his financial and personal affairs. We needed that info. to apply for committeeship (Canadian term). By the way, his children have stepped up their demands and emotional blackmail attempts re. the summer cottage issue. By now, I don't care. I know I've done my best to honour my husband's wished and protect his assets. I say I don't care about the income, but the toll taken emotionally and physically is great. Love to all. mary75.
When the neurologist gave my husb this test 4 years ago, I was SHOCKED at what he could not do. This was the first time I'd heard of MMSE and after that test & review of my husb's MRI, the dr. said, pretty matter-of-factly "Your husb has Alzheimer's...here's a prescription...(Exelon) ~ Perhaps he said more but I can't remember because I was just stunned & had eyes filled with tears because I had just watched Nancy Reagan bury Ronald about a week earlier on TV & the whole time thought "my goodness she is so very brave"...I didn't even realize what Alzheimer's was except what the media tells us "loss of memory"...that's such a broad phrase when it comes down to what "really" happens in this disease. My husb had a 26 back 4 years ago on this test...recently (January), he was a 3...very very sad. But he is still LOVING so many days towards me, esp if I am upset/crying...it's like my 'shown feelings' erases all the confusion & it's the same man I married 20 years ago! The hardest thing about the MMSE was "take this piece of paper in your right hand, fold it in half & throw it on the floor"...4 years ago, he took it, and threw it on the floor...that was so so shocking to me! I continue to be amazed at what "leaves" his ability as we go on & on with this...so sad.
There was some media attention to what the disease really is like with President Reagan. One of his sons was doing the media rounds. But he was the only one out there doing that, and I think didn't start until towards the end. Even with all the help she had, basically she was a spousal caregiver. And we all know what that means. It is very possible that he didn't start making the media rounds because she wasn't his mother and he didn't have her permission until pretty late in the game.
The first time my DH had to do the mini mental, He took the paper ripped it in half and handed it back. The doc and I both laughed. Second time, months later, he folded it in half, as directed. Who knows! One time he does terrible, next time, he remembers the 3 words. But he never remembers where we live. Tells me it's not important, that he never cared to remember those things. WHERE WE LIVE??? I think that's pretty important. LOL. He happily wears the ID bracelet and pendant I bought for him from road ID. and I must say, proudly displays them, saying, look what my wife bought me, she wants to make sure she doesn't lose me. I was afraid he'd be insulted... he was flattered.
That is a sweet story about the ID bracelet, Chris. My husb doesn't show it off to people, but did agree to wear it faithfully...i wear mine faithfully as well, just in case I'm the one who's hurt in an accident...esp since I'm the one who's driving everywhere.
My husband and I both wear the ID bracelets although sometimes mine feels like a chain! He also had a 26 on the MME 3 years ago and 2 months ago had an 11. We go back next week and he will have it again...thinking it may be lower. It is so sad to watch them take the test; I was also shocked when I realized the things he could not do. Now I'm surprised at what he CAN do!
My DH is almost too much NOT in denial. He is constanly talking about how bad his Alzheimer's is and how he needs to find the right medicine to help it. Luckily for him, he does not realize how bad it is or the exact progression. He is afraid he is going to die, but does not realize all the steps before that. After having a bathroom accident, he was frantic to go to the doctor to find a pill to stop the peeing! I tried every way I could to divert him since I couldn't tell him that it was the Alzheimer's that was causing it and would continue to make it worse.
He wants to go to the neurologist. It is very hard to see him tested and know that he has almost no skills left. Whenever an AD related story comes on, he wants to call or go back to the memory clinic to tell them about it. I just try to keep him not thinking about what is going to happen to him.
Val, the doctor never mentioned that it was "the test". He just went ahead and asked questions. Some of the ones I know on the test were among the questions. Some were totally different questions I've never seen any of you talk about. They also do a bunch of tuning fork things and touching noses I've never seen mentioned here mixed right in with the mini-mental questions. Basically he gets an exam.
I got him to go to the doctor because both the family doctor and the therapist insisted he needed to go.
My DH is aware that there is something wrong with him, altho he is not sure what it is. he won't go to the Neurologist anymore because he was told not to drive.... now we go to a geriatric spec, but she's in denial too. (she tells me how great he's doing) I just got off the phone with the VA, I found that there is a memory clinic there, and made an appt. he's a WW2 vet. I found it on this website, where there's a list of memory clinics. July 14 is the appt, so I 'll keep you apprised. When i called, the nurse told me it's a 2 hour test. Must be more than the mini mental which takes about 5 minutes. Anyway, they've always told him they are going to ask him some questions which may seem 'stupid' but just answer as best he can.
Chris: My DH had the 2 hour test at the VA here in California. He tested moderate to severe. They wouldn't give me a stage number. He had the mimi first and didn't do too badly on it so I was kind of surprised he did so poorly on the 2 hour test. They wanted him to go to a geriatric spec., but he doesn't want to go since it is hard to get to from where we live and lets face it, what can they do for him. Very little.
Chris: One more thing. We went to the VA so he could get his medication because it is free and it was so expensive at the drug store. He is on Razadyne, but I don't think it is doing much for him. He seems to be going down hill fast in the last 6 weeks, much more so then six months ago. He does see a woman at the VA every 3 to 4 months and she prescribes his mediation.
My husband did that mini test many times and i always tried to 'cue' him, and he failed anyway. it was heartbreaking to watch him look at me for help and i had to be quiet. during the 4yr neuropsycological exam the first 2hrs he scored 95% percentile on reading and writing. the last 2hrs he marked ANYHING with an X without reading the questions cause he didnt want to do the rest. needless to say the first scores were great and the 'last part' was rated, 'severely demented'...due to him just putting an X anywhere. he was nowhere that bad but in a BAD MOOD.:) thats the test he got stuck with and the summary wasnt very good due to all that mess. today he really is in that state they said in that report. he never agreed to anymore tests..divvi
By the way, although my husband never had the 5 hour test some people here have had, he did have over 1-1/2 hours with the neurologist the first time he saw him. That was in addition to some tests he ordered, and all of the stuff the family doctor sent over from the Cardiologist and the cognitive therapist. The second visit lasted quite a long time too.
The neurologist gave my DH a 5 minute test and he failed it. He hasn't been tested since. No one has asked for one. I've been reading about all the tests your spouses take, and I have been wondering why. Do your doctors just want to see for themselves how much they have lost, or are they part of a research study you all are participating in?
the half day testing my husband did in the first phase, was to try to see which part of his brain was still working well, from my assumptions they can pinpoint which cognitive areas he didnt do well in..per the summary report there were percentile notes about where he was good and other areas where he did very poorly. i guess thats the purpose of the tests..
Val, girl, no apoligies please!. if i was going to ever leave him i should have done it while he didnt have AD-he was a smarta** then at times and could be very condescending with his 180 IQ. my DH at times-even at this late stage of the game-can be super obnoxious and his attitude during those times tries my patience as well. this is just one bad side and most of the time he is very lovey and super sweet but that 'super attorney' arrogant side does peek thru as it did BEFORE the ad:) he is the love of my life, and i love him to death with all his faults and will stay with him thru to the bitter end -regardless of my complaining and i have to admit i can dish it out to him just as bad when he messes with me..maybe thats why we click.:) take care, divvi
I don't know, but I think my DH had the 2 hour test because the screener thought he was worse then the mini test indicated and because of some of the things I told her and sure enough he was much worse on the longer test. I think he scored a 26 out of 30 on the mini and then scored moderate to severe short term memory loss, long term memory loss and sight memory loss.
Thanks! And I was proud of my 160+ IQ. Don't think I've met anyone with a 180. I was a gifted child, had "gifted" education from elementary school on, separated from the rest except the high IQ kids. And look at me now. Just trying to find any old job & living with a "crazy" person. Ha! Still, I'm sorry. I was way out of line.
yeah, and look at him now, that super high IQ, photographic memory, high govt position when he was only 30, and it took him all of a couple of hrs to prepare for a court trial..and he won most all of them. look at him now if you want to feel sorry. his day consists of playing with toys for 18mo age and talking to himself i the mirrors, but even with this he seems content - i do think the higher the IQ the harder they fall. i know its hard on you too with having to make all these difficult life challenging decisions so early in your life. we never planned or thought any of this would be happening to any of us. we are all really in the same boat whether we like it or not. divvi
No we didn't and yes we are. I know how it must be for you to see a super intelligent guy fall to that level. I have been called a "brainiac" all my life. It's difficult when you have so few people to converse with on your level. But....I have come to this site, and all others are educating ME. It has been a relief to me to not be the one to figure everything out. When you are down & out, seems support comes to you. Or I got lucky. Anyhow, I'm thankful.
One of the doctors that worked with DH made an interesting comment. He stated that the more intelligent a person is, the longer they are able to hold it together. However, just like the house of cards, when they start to fall, they really fall. From how the disease has been affecting, DH, it is definitily true in our case.
Mary, you asked why all the testing. Maybe I can answer. My husband never had the long 5 hour test. In fact I think he had minimal tests because there was all of this information available to the doctor. His quarterly visit is realtively short. They check some physical things, possibly because of how he got dementia. They check a few of what I know are the mini-mental test questions, probably to see how fast he is progressing. I think when the physical stuf starts to go it will go fast.
They need to know how fast he is progressing just in case he needs to be placed. I think they are the group of doctors who would do that placement, although the family doctor is also a possibility. They need to know so when the time comes for Hospice they will set that up too. I just found out that my favorite hospital, of which this group of doctors is a part, also does Hospice. So they are probably the door to that group of nurses.
They wanted to make sure that some of the background blood tests that need to be done if someone is on certain medications are being done. All blood testing goes through my husband's family doctor because that medical group know the medicare rules and when they order blood tests the bills get paid. Except in an emergency no one else is ordering blood tests. Turned out they were already being done every four months. No reason to order a second set.
My husband also had ONE CAT scan, and only one. Frankly I'm not taking him in to have additional testing. The blood tests are different because they are used to regulate his medications so he is as comfortable as possible. But you would have to explain why he needs more than 15 to 20 minutes of testing before I'd subject him to it.
There are people here who are in drug trials. That is different.
My husband sees his regular doctor every 6 months and gets a mini-physical, including blood tests because he is on Lipitor for high blood pressure, so the doctor runs the tests for all at the same time and send the results to the neurologist. I e-mail the neurologist the day before our appointment with his status - what he can still do and what he can no longer do; and if I have something I want her to check, I ask in the e-mail, so that the "appointment" is her talking to my DH and not me. She's signed off on the letter for travel, for the handicap parking, and said that she would be happy to help any way she can. However, when, during the first test on the first visit, she asked him to name all the animals in the world that he could name and to take his time, and he only named three (and neither was cat or dog), that was all the testing she apparently needed. He also had the one MRI and PET scan. Nothing since. I don't think at his stage it would help him or anyone else. I was just curious because so many were mentioning these different tests.
As others pointed out, high IQs can cover it up longer, as did my DH, but this last year and a half have been a total downward spiral. Today I asked him if he wanted me to bring a caregiver in to be with him all day and he said yes. Since he says no when he means yes 3/4 of the time and yes when he means no a lot of the time, I have to guess which he meant! LOL
Mary, my husb was getting "quizzed" on the MMSE every time we saw the neurologist (every 6 mths). BUT, we were also in a drug trial & they did alot of quizzing as well. But the "scores" my husb got that I was referring to were done by the neurologist. Sometimes the MMSE is given to see if you qualify to participate in the research because they want you to have a certain "number" in order to do the study. If you have a "low" MMSE, you prob wouldn't qualify because they need you to be able to respond to their q&a's about the study itself. I hope this info was helpful.
The MMSE can give info on whether there is cognitive disfunction, and provides a little insight -- but not a lot -- on what type of disorder may be involved. It is usually used as one of many tests in establishing an initial diagnosis of a "true" dementia.
Many doctors then go on to use it as a measure of how much the patient is failing BUT studies have shown that it is NOT accurate for this. Yes, going from 26 to 2 says the disease is progressing, but going from 26 to 23 doesn't mean much of anything. (I've been quite surprised at how often they'll use MMSE scores to qualify patients for clinical trials.)
If all the blood tests, EKG, and imaging tests (MRI, CAT scan, etc) plus the MMSE indicate that the patient has dementia, then it's important to try to pin down what is causing the dementia, to know what medicines may be helpful. Drugs for AD may be contraindicated for patients with FTD, for example; and patients with VaD should be on medicines to prevent further vascular damage. So the more extensive neuropsych testing is done to help determine which regions of the brain are affected, and how. Some people have had 4-hour tests; my husband spent the better part of two afternoons, one of which also involved me, to add insight about his ability to function "in the real world."
I assume additional testing may be done later on if the patient's symptoms do not fit the original diagnosis. Trying to determine what disorder a patient has can be extremely difficult.
In addition to the above, my husband has undergone a lot of additional testing because he enrolled in two studies. One was a clinical trial; he was tested every 6 to 12 weeks for that. The testing was somewhere between the MMSE and the full-blown neuropsych evaluation, usually took a couple of hours (including a mini-physical, blood workup, etc.)
The other is what's called a longitudinal study; there are dozens of research centers participating in this. Once a year, they give the patient a full-blown neuropsych evaluation (two half-days) plus question the testing partner (someone who spends a lot of time with the patient) about how well he functions. Interestingly, the testing partner's perception of ADLO function often differs from how the ADLO does on tests. Anyway, the purpose of the longitudinal study is to try to detect trends that can be used in the future to predict what symptoms an AD patient will have, how rapidly the disease may progress, etc, and also get more ideas on what symptoms can be used for early diagnosis. If the patient will cooperate, he'll be tested annually for the rest of his life; and then after he dies, will be autopsied, including a brain biopsy. (Anyone participating in a study can withdraw at any time, for any reason.)
I think one of the reasons my husband wasn't tested as extensively as some others is that he was ALREADY on the vascular medications. Between his family doctor and the cardiologist they had him on medications for high blood pressure, high cholesterol, a blood thinner for the pacemaker and a medication for type II diabetes. The only thing that was left was to check for low thyroid (doesn't have that one) and do a CAT scan since you can't do MRIs on someone with a pacemaker.
My husband would have the 3 word test everytime we went to his previous Neurologist, when we changed Neurologist, he gave him the 3 word test & my husband so proud of himself recited the 3 words, only problem they were the words from the previous doctor & not the words this Neuro had ask him.
I remember the last time our last neuro did the mini test and asked the 3 words. i think in'99..DH couldnt remember any of them. that was the consultation the neuro politely stated, 'vascular dementia/and or AD". at the end of that statement DH asked the dr, why do you only want 3 words? and then progressed to perfectly recite the ENTIRE Shakespeare sonnet from 'macbeth'? the " TO BE OR NOT TO BE:...as you can see, they can be very clever at covering up alot of the signs..i think the dr was quite astonished.divvi
My DH couldn't remember the words because according to him they weren't important. At that time he probably could have recited the Gettysburg Address because he was always proud of his ability.
bluedaze, it never ceases to amaze me, the number of things my husband says aren't important enough to remember. And with a perfectly straight face, too.
What is amazing is that so many of them use exactly the same words to explain away the things they have not memorized. It isn't important. They don't care to remember that. Totally unimportant things like their address and phone number.
Divvi, that was so funny I cried. I don't know if you meant it to be, but it just struck my funny bone. I would have been quite astonished too, but he is/was rather intelligent!
Now, my husband has asked for those "research papers" that I pulled off his desk a few days ago. Right now I'd rather him not see them, but he asked. He said "maybe something is wrong with me." Who knows what each day will bring.
Got back from my colonoscopy today. I was about to faint today, no food since 10 am yesterday. No liquids after 10 pm last night. No polyps but seems I have diverticulosis. Just one more thing to google tomorrow. Still groggy from the anesthesia.
Got out my college transcripts yesterday, found out I had lots of credits in early childhood education. Called a preschool & turns out I can qualify as a lead teacher with that & my degree in social work. (was thinking maybe an assistant) so I will narrow my job search to that. Maybe my education will pay off after all. They have 2 openings. I am so excited because now maybe I can be SOMETHING when I look.
Bluedaze, my husband told me it wasn't important that he didn't remember everything, in fact, he said sometimes he acts like he doesn't remember because he doesn't want to discuss it.
Val yes i meant it to give chuckle. as DH had phographic memory he could read it once and it stuck. so his hobby was memorizing all the shakespears soliloquies. he was super good and shocked everyone when he knew the whole kaboodle of them. the drs face told it all. i know for a FACT he was really questioning his diagnosis at that point..i may have chuckled for a minute but the severity of the diagnosis of course ran my blood cold. its always stuck in my mind a doctor might remember as one of those 'moments' in his career. and ps thats wonderful news you can work with preschoolers. they are so adorable and easy to manage at least. 'Miss Val" has a good ring. best of luck, divvi
I moved all of the colonoscopy comments to the existing discussion topic, "colonoscopy." You know me - just trying to keep things as organized as possible.
I just have to add my 2 cents.... Nothing is important enough to remember in my house. not where we live, what day it is, nothing. The answer is "I never cared about that stuff" Your address? How did you get home. anyway, I'm glad to see I'm not the only one in the boat.
>What is amazing is that so many of them use exactly the same words to explain away the things they have not memorized. It isn't important. They don't care to remember that.
Okay here we have another "toothpick" instance!! One of those things we've all - or many of us - experienced that isn't in any of the user manuals!