On May 29th, I wrote about our visit to the neurologist whose mini mental test says that Sid has not declined much in 6 years. HAH! Ask anyone who knows him how obvious his decline is. The doctor suggested I take Sid for a complete neuropsych exam - he has not had one in 6 years. I was not going to do it because I did not see the point. However, it was suggested to me by one of the case managers to whom I have been speaking about getting services, that a current complete record of his functioning would be a good idea. The only record on file at the neurologist's office, besides all of my notes about Sid's functioning, is the mini mental.
I called the neuropsych today, and they had a cancellation for tomorrow, so we're going. Six years ago, I was shocked by the report the psychologist wrote - I did not think Sid was functioning that poorly then. I cannot imagine what the results will be now.
This will be the last time I will put him through this testing, but I am doing it in case any of the State agencies ask for it in order to qualify him for different services.
Oh, and as for his reasoning ability - yesterday, he was so weak and in so much pain, that he spent the whole day in the wheelchair in the house. He could not walk. HOWEVER, today he says that there is still no reason he cannot drive. Physically, his response time is better than mine (according to him), and he can move his feet perfectly well from pedal to pedal. The fact that he cannot get out of a chair, walks at a turtle's pace when he is able to walk, and complains constantly about how weak he is getting, has no bearing on his ability to drive - according to him. So much for reasoning ability.
Thank you for sharing. Very often people don't see any reason for more testing for medical reasons but don't see that medical visits might be necessary for legal or insurance purposes. It hadn't occurred to me that another neuropsych test might be helpful for getting services if other tests (MMSE) don't suffice or reflect the decline.
Interesting point, and useful if it helps access services. Jeff had neuropsych testing in '07 for Dx, and again in '11 in conjunction with a couple of NIH clinical studies. That was when I knew beyond a shadow of doubt that our clinical study days were over. It was very difficult for him.
Joan, funny you should mention this topic today. Rich has declined significantly since he was hospitalized with aspiration pneumonia last August. I contacted the best memory clinic in NJ and they suggested that he go through the neuropsych tests (hasn't had them since 2008) to see how much he's declined so they can help with the med management (becoming aggitated again, sometimes aggressive and not sleeping nights). It is a 3 hour series of tests and I've decided not to put him through them because I don't see a value. So instead we consulted with a different geripsychiatrst because the one he's been seeing has not done much with med adjustment to help with the changed behaviors. Guess what?! She did a MMSE and he scored a 9! I was shocked (and also saddened) that he has lost so much in 4 years. He scored a 21 in 2008.
Perhaps he should have the testing just in case, but as of now there are little to no services for which he (we) qualify. Just more out of pocket expense.
Speaking of test...I will ask this question here since this tread is about test. My dh has been under hospice evaluation for about 3 weeks now. Today I placed him in a ALF so I could get some respite care because I am just done in. I have signed him up for two week and hospice will continue seeing him there for the two weeks he will be there.
The hospice personnel had requested his files from the VA and they gave me a copy of all his files. I was reading them last night and one said on 10/24/11...he was given a GAF test and scored 40. I looked this test up and it appears to me that this is a test they give people to see how far off their rocker they are and could be violent, etc. I was shocked. 40 is a terrible score to have on this test. I am going to be asking my neuro about this test when I take to see the neuro in July. If anyone knows anything about this test and why they would give him this test I would like the info. I don't even recall him being given this test except for some questioning the physco nurse ask him one time we were there and she basically only keeps track of his meds.
Joan, it seems that Sid is always trying to prove reality wrong and you are left to struggle with the truth. It is amazing how our LO's brains see things!!!! Your new perspective on the testing is interesting and I will definitely keep it in mind.
Judith KB, the GAF or global assessment of functioning is more of a snapshot assessment scale than a test. It is a series of numbers representing a mental health interviewers 'current' understanding of a persons ability to perform life activities, interact with others, work, etc. And whether they're a danger to themselves or others. It is defined in the Diagnostic Statistical Manual and a number is often required by institutions, insurance companies or others who deal with mental health. So, it is not that a score is good or bad, but rather it is a reflection of how the interviewer sees the individuals abilities, needs and safety issues. I am not sure that this is useful in dementia cases but maybe others will be along to help a bit more
Well, this was an interesting day. I can't wait to read the report generated from all of the testing.
The neuropsychologist, Dr. B., sat with both of us at first, and asked Sid a bunch of questions about how he felt about his situation, what he thought was wrong with him. Sid did say that he thought his memory was getting worse,but there is nothing he can do about it. Then he asked a lot of open ended questions - questions in which he had to think of an answer out of his head, rather than answer yes or no. Whoa! Even I was surprised at how poorly he did. First, Dr. B. asked Sid if he remembered Dr. B. from 6 years ago; if he remembered the testing; if he remembered the office; if anything looked familiar. Sid answered no to everything, then turned to me and asked me why I didn't tell him that he was tested with this doctor 6 years ago. I did tell him yesterday and on the way to the office today.
Sid watches 2 - 3 hours of news shows every day. He reads the entire paper (although he admits he forgets what he reads as soon as he reads it). Dr. B. asked him what was going on in the news. Nothing. Couldn't think of anything to say. Dr. B. asked him if there was an election this year, and Sid said he didn't think so. I was stunned. When the news is on, Sid makes simple, basic remarks about Romney and Obama all of the time.
He asked Sid if there were any wars going on, and Sid said there must be somewhere in the world. He asked him what he did with his time, and Sid said he watches television and goes to a support group ( Day Care). Had no idea what he does there. Dr. B. asked him what month it was, and when Sid said May, he told him to try very hard. So he said April.
After a bunch more questions, he let me give my version of things, and then sent him in for the testing with another neuropsych. 2 1/2 hours later, he came out exhausted, but thought he did fine, except for a few parts. I should have the report in 1-3 weeks.
On the way home, Sid asked me if he could get a brain transplant.
I am exhausted from driving 100 mile round trip. Going to take a nap.
Yes, the report will be interesting. Even I, who have no involvement, is interested in results;) Hope you're having a good, peaceful, uninterrupted nap.
I am sorry that you are so tired and what you saw was such a shock to you. I am surprised that the neuropsychologist didn't talk with you separately, but might have felt that you would speak freely. If the test was 2.5 hours it sounds like one of the shorter versions, my wife had 8 hours of testing but that included all components of the test.
1-3 weeks to generate a report sounds about right. I think we had to wait a month for my wife's report. But that was a full test to evaluate the effects of a TBI.
One advantage you have in reading the report is that Sid took the test 6 years ago so you will see a measure of change.
Joan, we are all interested in the "results" of Sid's testing. as I mentioned above at this time I have declined to put Rich thru 3 hours of testing (particularly now that his mmse score is 9) but am still interested if it might be worthwhile in the future. Hope you had a nice nap. You deserve some rest.
Joan...Very interesting and thank you for sharing. I too will be interested in the final report. When they tried to give my dh a 2hour test at the VA 6 years ago...my dh got mad and frustrated he walked out on them. So glad Sid was so cooperative.
I like Sid's guess of what month it is....my dh thinks it is Nov. And, he doesn't know the Pres. name.
Today DH didn't know what month it is, didn't know his age, didn't know what day it is; and when the doctor came in the room, DH said - well, I haven't seen you in years! Dr. said, have I changed any? DH said - yes, you've gotten uglier. LOL
That is so funny Vickie. Hope you could laugh at it too. Most of us must have found this wonderful site within a year or two, because it seems most of the spouses are experiencing the same decline.
Vicki, isn't it funny after all they lose somehow they can still find their sense of humor? My DH has also lost a lot these past few weeks & today he asked me where Elaine was. But he can still crack a joke once in a while (or at least he was able to ).
I laughed yesterday when he said in response to the Doctors question about what town he was in....Vancouver! thought that was a bit funny. He too thinks it is November any time he is asked, and that he is 73, (not 63)
I was taken aback the other day when he saw me and called me the wrong name, and then guessed three more off the wall names. I know he KNEW me, but could not remember my name. Our poor dears.
Glad not to be in Vancouver, and here in sunnyness.
This was my post on my blog April 19 after taking Bob and "Al" to the doctor I am sure you all can relate
Sheri took Bob to the doctor yesterday. Nurse says "Have you had a fever Bob?" "Al" says no... Sheri says yes. Nurse says "are you coughing a lot?" "Al" says no I don't think so.... Sheri says yes. Nurse says "do you have a runny nose?" "Al" says no.... Sheri says yes. Nurse says " is your medicine list right?" "Al" says yes... Sheri says no. Oy vey... :)
When I read that Sid asked if he could get a brain transplant my heart skipped a few beats and the ol eyes filled with tears. Lynn asked me that many moons ago, it was when I knew we were now venturing into the land of no return. *sigh* My heart aches for both you and Sid, for every single one of us......
I received the report today. The scores were mostly what I expected. The written content of the report was not at all what I expected.
Dr. B. seems to attribute any declines in scores to what he sees as Sid's unwillingness to "push" himself. He wrote that Sid has a great deal of negative self appraisal, low frustration tolerance, and gives up too easily - does not "push" himself to answer the questions. He wrote that even though Sid reads the newspaper and watches the news, he "claims" to remember none of it.
Sid does have a tendency to ask first, try to figure out the answer later. For that reason, I used to tell him to think about it when he asked me a question for the 2nd or 3rd time. He used to be able to come up with the answer sometimes. As his memory has worsened, he has not been able to recall the answers or even remember he asked the question. I no longer push him to try to remember because, yes, it frustrates and depresses him, and I don't see the point in putting him through that.
In any case, I read the report thoroughly 3 times, and compared the 2012 scores to the 2006 scores. I was a language therapist - I used to do testing all of the time, so I am familiar with the scoring and lingo.
Some of the test scores did not change significantly; some actually went up. The majority, however, were beyond dismal. His strong point is visual spatial, and that went from the 46th%ile to the 16th%ile. Most of his various memory scores, which were in the 5th - 16th%ile in 2006, went down to <1%ile.
I'm not buying it that those declines are due to his unwillingness to "push" himself. They demonstrate what I have been saying all along.
And just for laughs, he recommended agressive PT and OT to "increase his functional independence". Had to be for laughs, because "been there; done that". Nothing worked, which is why he is on pain management. And for more laughs, he recommended that Sid see a psychiatrist to address his negative self appraisal and depression. I say that had to be for laughs, because we've "been there; done that." Sid didn't remember a thing the psychiatrist said by the time he got to the elevator.
Joan, I remember an old expression that explained frusturation. It was something like, "That was so frusturating it was like pushing a rope." I would love for Dr. B to be the person who's job it is to encourage and teach Sid to "push" himself.
all i can say it is pathetic they know so little about the real disease and what it does to the afflicted person. short term memory, how to they think they will remember what they learn in PT or talking to a psychiastrist? geez. such a disgrace it aggravates me to no end. it should be new required courses in medical school to have a livein AD person for 3mos. !
That is outrageous of a report. It sounds like he has no clue what dementia is. When hb had his, all the results were figured in relation to Alzheimer's. I think I would file a complaint with the medical board about that doctor that tested him pointing out he has no idea what happens to the mind of someone with dementia. Like they can help themselves improve??? It would be hilarious if not so sad.
A real genius - motiative a person to achieve a goal he has no concept of what it is and talk theraphy for an Alzheimer's patient who can't recall what you're talking about? This Psych must be a graduate of the school for the terminally vague. Now the State of Fl is satisfied, you've got all your paperwork is in order, the Neuropsyc got reimbursed, and the "system" worked
Someone went to university to learn this! You don't need no stinkin ejukayshun. It's simple high school biology. No one knows why, but brain cells are damaged/dying, the send/receive signals are missing each other, cells controlling sight, sound & speech are failing.
He might just as well tell Sid that if he wants to go someplace, he should stop being so negative and just push that giant boulder out of the way of his wheelchair. Push! Gheeze!!
yes I think this is another instance where he is put in his underwear only, rolled in honey, beside a red biting anthill. Just so ABSURD!! He needs to be told, someone does!
After an experience similar to this, I quit taking DH for any more evaluations by "experts". After reading what you wrote about the report results, I thought you could probably take Sid to the grocery store and ask the first three or four people you saw what they think and get a closer evaluation than that. What are these people thinking when they come up with this stuff? I'm sorry you had such a bad experience with this.
DH ran into some examiners who thought if they were very loud and stern they would get better results during the testing. I guess they thought it would make him try harder if he was afraid of them. It's just crazy. Even after the scans showed brain damage, one neuropsych guy told DH he was just depressed and needed to work with a recruiter and go back to work. I actually wrote that one a letter and told him what I thought of his useless tests. Truly, are we just supposed to take this (insert appropriate four-letter word here) and pay their massive bill and go home and not say anything?
Think of the millions and millions of dollars that have been charged by these useless professionals. Then think of all the help those same dollars could have provided for caregivers and the people they are trying desperately to take care of.
My worst experience with a neurologist was when, in '04, we were referred to a geriatric neuropsych group at Johns Hopkins U., and got a guy at random. It was remarkable how much that dude--whose purported specialty was people with issues such as Alzheimer's--was uninterested in listening to my insights, and kept pushing the notion that Jeff was somehow suffering from ADD or something. Sometimes I wonder if when even the supposed experts refuse to accept the truth, it's all part of the giant wave of denial. No one, not even the docs, want to believe in AD. They'd rather believe Dr. Oz.
This reminds me when my dh went to the VA doc and the dr. suggested he should be going to the smoker free clinic because he shouldn't be smoking. Duh...He can't drive to begin with and if he went he would forget what he was told to do or not to do before he got out the door. I did report this to another person at the VA...I suggested that when they have staff meetings someone should remind the nurses and doctors not to suggest an activity for AD persons that require memory ...like following directions, etc.
It drives me crazy how unknowledgable some doctors are about this condition.
I have been hard on myself for years for not getting Lynn diagnosed sooner. Perhaps it was a good thing he wasn't diagnosed until he was well into stage 5, by then it was obvious to even the most incompetent doctor so I never had to deal with morons like this.
Joan, this is precisely why I wrote on another discussion thread that I only take my wife to see a geriatric psych once a year now ... to the Alzheimer's Disease Research Center at Mount Sinai Medical Center in NYC. And that is ONLY because she is in an international longitudinal study and her annual neuropsych testing is, adding to the data bank that will, one day... hopefully ... help researchers make progress in understanding AD better. And ... it's totally free since she is part of the study. Testing on her eval last July was at the 0-1% level on nearly half the subtests ... although, of course, that meaningless MMSE score was still 25! I know that more test scores will be at that 0-1% level when she is tested again next month, and some other scores are bound to be lower as well since she is continuing to spiral downward. So testing isn't going to show me anything I don't already know. Anyway, since Clare is not having severe emotional outbursts and her only AD meds are donezepil (generic Aricept)and Namenda, plus an anti-depressant, I just see no need to go to any neurologist or geriatric psychiatrist in between those annual free testing visits. It's probably time to stop the donepezil and Namenda as well since they don't seem to be helping at all ... although some of the most recent research seems to be indicating that donezepil MAY be helpful in moderate and severe stages in slowing the rate of decline. IF true, this would be a major reversal of all of the earlier research that indicated that Aricept only helped about half the people who took it, and for those it did help it only worked for about 18-24 months max in slowing the decline. I'm not aware of any recent research showing that Namenda may be effective in slowing the rate of decline after 1-2 years, at most. Anyway, back to the point of Sid and his neuropsych exam, I think we as caregivers already know more ... a LOT more ... than most neuros and geriatric psychs due to our 24/7 observations as caregivers. And NO exam, short of unrelated physical issues, is going tell us anything we don't already know!
The doctor seems to not understand that the dementia itself could prevent Sid from "pushing" himself. The hardest thing for me to adjust to is that L can't just push herself to do something. Yes, she is more motivated to do somethings but not others, but she can't control that motivation. She can't will herself to pay attention or have better concentration or to remember that she just asked me something 5 minutes ago. "If she just tried . . . " yeah, but the part of the brain that determines to try is working properly.
Your descriptions of Sid leads me to believe that he does push himself.
Joan, thanks for sharing Sid's test results. I fully understand your frustration and anger regarding the neuropsych's assessments and comments. As I've mentined before the neuro who dx'd DH with "pre-senile dementia" also advised me (seriously) to buy pepper spray in case I had to defend myself against his physical abuse. He said to DH "Your eyes might sting a while but you won't be hurt permanently". I think most of the nuerologists are idiots-even those who supposedly specialize in Alzheimers/dementia. They really don't have a clue. N wnder there's not been significant advances in the research/treatment of Alzheimers and dementias.
Sorry your experience was so disappointing. It is for those reasons I refuse at this point to have DH go thru any neuropsych testing and I don't want him to see he geripsych monthly. What's the point?
As I have said before, I fired the neuro after only 3 visits. Now DW is seen only by her PCP who handles all medications and fully understands what is going on.
ok in all fairness lets not call all the apples in the barrel rotten! haha. there are some very competent knowledgeable drs and mental health providers out there that know what the score is. but mainly when they have witnessed the AD up close and personal, like if someone they know has it! grin. its hard to fathom some of the irrational thinking they can do and display a series of bonafide diplomas on a wall. but yes lets give thanks for the many wonderful drs that DO get it and are trying their best to serve the patient and their caregivers in the best possible way. ok i think that needed to be said, now carry on bashing if you want! hahahaha. divvi
I just have to share this with you. It's a "Here's to You, Dr. B!"
After the pain clinic, we went to Red Lobster. They have a fantastic special - 4 courses for $14.99. Choice of soup; choice of salad; choice of entree; choice of dessert; and all the cheddar cheese biscuits you can eat. I ate clam chowder, a Caesar's salad, and about 4 biscuits. Then they brought my meal - 2 chicken breasts over mashed potatoes and topped with shrimp in a garlic herb sauce. I stared at it and asked for a box. No way was there any room in my stomach for that. Even Sid didn't finish his meal. He said he could not remember (Ha ha ha ha) EVER bringing a box home. Actually, he was correct. In 42 years, I don't think we've ever brought a box home for him. He has cleaned every plate bare. The waitress boxed up our dinners, desserts, and biscuits, and Sid kept repeating to me and to her how he has never brought a box home. On the way home, he said it again. He put all the food in the refrig.
It is now 2 hours since we got home, and I told him since we ate at 3:30, he had to eat something for supper later. He asked what he could eat, and I said.............................you can finish what you brought home from Red Lobster. He scrunched up his face, looked at me like I was an alien from space, and had no clue what I was talking about. And then he asked...........................did I bring food home from the restaurant?
Yes sirreee, Dr. B., Sid doesn't remember things because he doesn't PUSH himself hard enough.
And it isn't just the doctors either. The PT who comes to our house can't seem to "remember" that DH can't "remember" his instructions. The nurse kept asking DH what year it was every time she came. He always said 1920-something. I finally asked her to quit asking that question, that he doesn't know the year, month or most days and will not remember it when she tells him. So frustrating - as they are supposed to be helping us, but only frustrates our spices more!
Wow Joan, It is at times like these that I learn from you and also realize that living in a remote location may actually be good. When dh was finally diagnosed last year the neuro recommended a neuropsych exam but she admitted the closest one was in Seattle.... A six hour drive... when I told our friend and attorney this he said NO let's just file all the paperwork now and if then we have to do this we can. Well so far we have not had to do this and I cannot see why I would ever do it now. Drive six hours.... hoping dh does not poo or pee in my car... then the motel... last time we stayed in one I had to pre-clean it before we left and that was before he started wetting the bed every night.