I need everyone's advice here. I received a letter from the Alzheimer's Disease and Memory Disorder Center today and they want to schedule DH's annual Neuropsychological evaluation (testing) in August, followed by his Clinical examinations. Last year, he scored 11/30. When he finished the day last year, he looked like a beaten up old man, he was shaking and totally wiped out. I swore that there was no way I'd put him through this again. The clinical follow-up was a stressful day, with him having a "moment" during this afternoon as we spent from 1:30 until 4:30 ...waiting as long as 30 minutes between the initial nurse interview, then a Fellow (MD) visit, then the Neurologist followed by the Clinical Psychologist. (They confer in a group session between each visit... He was threatening to leave four of five times and we had to take a walk around the 18th floor one time. All they basically said was, "Yep, he's still got it". No real changes in routine, he is not in a specific study, and no one has any recommendations other than to say, "You need to take care of yourself, you know!" Well, YEAH........ easy for you guys to say,...got a Medicare/Insurance RX for that one??
I am inclined to call them and say, I don't think we are going to subject him to this ordeal (4-6 hour test) this year. What benefit does it serve?
Would they "fire us?" Isn't this silly. I don't want to make them angry at me, but I have him on a plain here, and don't want to rock his boat. He's in a severe stage, really doesn't understand much of anything that's going on, but is still taking care of his personal needs (with help) and isn't bedridden. I recognize that they are so fragile and the least thing can kick start a deeper regression.
I don't see any point to the testing. Have you asked them why they think he should have it done? It seems as if it's too much stress for him and for you. The neuropsychologist who tested my husband this year said he didn't need to come back unless something changed. He's only been tested twice and is still considered to have MCI.
Nancy B, I took my DH to the yearly testing at the Alzheimer's Research Center in Seattle in April. It was really very traumatic for him. If I had it to do again, I wouldn't. Basically he scored a seven on the MMSE and they said they didn't need him to come back (He wouldn't have, anyway). They are going to continue to do a yearly follow-up with me by phone but no more exams, etc. You really need to weigh the benefits against the problems it causes. If it were me, I would cancel, for what it's worth.
I'm all for helping with research that might benefit those yet to walk in our shoes but not when it causes the type disruption and dismay you describe, Nancy B.
I wouldn't take him back. If he were in a drug study, then maybe. My husband just had his second one and got so upset everytime he couldn't remember. He finally quit and said he wasn't going to do it again. The man doing the neuropsych testing said two years - we will see.
This year the generatic Dr. I take him to annually administered the short MMSE test that took 10 minutes and he scored a 13. The last long test he had was 4 years ago. She said she seen no reason to do the longer test and wear him out. I agree. The short test does not seem to bother him and is helpful to me.
My DH had a nine hour test over 3 days when he was first Dx'd. We went back a year later and the neuropsych wanted to do the same tests.... DH flatly refused. He was supposed to have an appointment in August but I called and cancelled it several weeks ago. DH was worn out the first time and swore he wasn't doing it again so that is what I go with. We have a neuro who is great so we will just stay with him unless there is a big problem.
I couldnt imagine taking a 4-6hr questionaire for ME with the stress we under much less our spouses. i would not put DH thru any sorts of testing that upsets him- science or no science. they are only going to see that he has deteriorated significantlyand maybe extract from that what areas he is declining in over the yrs at a faster clip- that we can deduce from looking at them. no way. divvi
I agree with everyone else-NO WAY!!! They are frustrated enough and we are under constant stress so what is there to gain from all this testing. I would call and tell them how you feel. You may find a dr with some compassion but either way, I'd never put my dh through this again. Good Luck
When my DH was Dx'd in 2006, he had what was to have been a 4-6 hr neuro-psych test. It didn't take that long because there were sections he could not do (Learning Disabled)and sonme he did part of and then declined to proceed on. Wedid get the Dx of VaD and early to mid-Stage 5.
Since finally getting settled with 2 wonderful Dr.s, the concensus is NO more testing for anything unless an issue or event warrants it. It took a bit of effort to find our neuro-psych Dr. but well worth the effort. There is no sense in putting him through tests for things we won't be able to treat effectively, nor to verify what we already know.
Today (8/27/09) hb's neurologist's ofc called to say the doctor wants hb to see a "neuro psych". I was at work; so said "okay." Don't know if it's for testing or just a chat. She's to call back when she's set up the appointment. BUT after reading this thread, it sounds like a *very* intensive test might be in the mill. When she calls back, I'm going to ask why the neurologist wants this. True, my hb cognitive abilities have dropped a lot in the last 3 months; so neuro switched him from Aricept to Exelon patch. But, we know that's the path it's going to take, as you've said above, why bother.
What exactly is done in a "neuro-psych" test? I'm thinking I want to explain it to hb. At first I tho't I wouldn't, but he's still aware enough to make some choices, I think. After the neuro visit last week, he said, "when I get worse, put me in a black bag and drop me in the river."
My husband just had his second neuropsych testing a couple of weeks ago. It was a shorter version of his first one (6 hours versus 2 hours). I was not in the room for most of the testing but the part I saw consisted of my husband following some directions doing hand movements and being asked if he knew where is was, what floor, season, etc. Then he was asked about how he spends his days. I was asked to leave after they asked me if I had any concerns or comments (this was after the doctor asked my husband if it was okay to speak with me). My husband couldn't really explain to me what they did after I left other than they asked questions and he had to write some stuff. He handled this test okay, but he is pretty apathetic about things and doesn't real "get" that he is ill.
We are scheduled to meet with the neuropsych next week to get the results.
Zibby, the test usually takes 4-6 hours, with breaks. They actually suggested I send along his favorite snack or a cold drink. (I couldn't imagine they wouldn't have cokes or coffee for their 'guests') The tests consists of countless questions, age, address, who is the president, endless trivia questions...they are asked to draw a clock, set the hands to a certqain time, asked riddles, (If the Lion ate the tiger, which one is dead?), and there are blocks and triangles that go into holes, count backward from 100 by 7's. -- By the end of the test, the patient is frustrated and usually a little angry at being bothered, quizzed and tired. From the results of this test, they are able to determine sections of the brain that are affected, and come up with a score...Perfect is 30... My husband scored 11 a year ago and would probably score a 5 this year. I canceled the appointment this year..it wold have been the 4th year he would have been tested, and I just couldn't subject him to it again. I do believe it is necessary in the beginning to have the tests. In no way whatsoever am I suggesting anyone NOT EVER have the tests. It's an important tool to use in the diagnosis. But the 4th year in a row...mmmm, don't think so. The only purpose at this time would be for research purposes..to measure his rate of decline, which has been continual. (NancyB)
Thanks, Nancy and Deb. It sounds like a "glorified", read "longer," MME because some of those ?s are ones from that. I ask myself, "Do I care what part(s) of the brain are affected if the bottom line is eventually what it is"? Think when the neuro's ofc calls back, I'll ask more questions and then talk w/hb and see what he thinks because he is still aware enough to make a decision...I think.
DH had a neuropsych eval in 2007 -- lasted one full day with a lunch break. We received a 5-page report and had a face-to-face report with the doctor. Among the tests given and cited in the written report were: Reynolds Intellectual Assessment Scales, Wide Range Achievement Test-Revision 4, Neuropsychological Assessment Battery, Wisconsin Card Sorting Test, Delis-Kaplan Executive Function System, Aphasia Screening Exam, and the Beck Depression Inventory. As I recall Medicare paid for most if not all of this. I doubt we'll do it again.
Nancy B, I have decided not to put Dave thru this anymore. It is what it is......they aren't telling me anything that I don't live with everyday. So what if he scores an 11 or a 30. The disease is still there. I just keep his appointments so I can choose whether or not to keep his Alz meds current. I decline all tests. Please note that as an aside, I pray for Krissy every day, and sign her guest book everyday as well. Your whole family are in my thoughts and prayers, every second of every day!
Thank you soooooo much Diane. I cannot tell you the pain I feel in my heart for Krissy. She is fighting so hard and everything in her is fighting back to 'go to sleep'. The past year, she has suffered with every kind of disease there is, from Crypto (Cryptosporidium enteritis is an infection of the small intestine that is caused by the parasite cryptosporidium) that she actually got when she was in the hospital for a heart catherization. You cannot imagine what that did to her entire body. It's similar to what killed so many people in Africa who had E-Coli. Just like with A.D., we're facing each and every day for what it is...one at a time.. We can't think about tomorrow. Just get her through this ONE day is our mantra. (NancyB)
It's entirely my pleasure. After reading Krissy's story and following the journal, she truly is a remarkable woman! A fighter, to be sure. Her entire family is to be commended for your devotion to her. Our prayers will be answered, and God will find her a heart in His prefect time. I'll keep reading and signing! :))
We were with her for her first two transplants,and I so wish I could be there now. But she's older, has her fiance',his parents, her parents, her grown siblings, - her maternal grandparents...and they only allow a few visitors in ICU every 4 hours. Mostly, she doesn't know who is there and who is not. It's so hard for everyone...
Got the results today of my husband's second neuropsych testing. He has declined pretty much across the board about 20% from last year and the results basically have also shown it is FTD with no Alzheimers Disease involvement. We did get one piece of good news in that his verbal learning memory has improved about 50% over last year. He was on no meds last year but this year he has been on aricept and namenda for about 6 months and the neuro and neuropscyh both believe that is helping a great deal.
As was explained to me the verbal learning memory means that he is able to process conversations (words) much better than following a story (pictures) that is more visual like television. His visual learning memory declined about the 20%.
JeanetteB, aricept does not work for all FTD patients. A lot of them have a bad reaction to it making them more agitated and/or aggressive but his neurologist felt that since he did have some FTD patients who it helped that it wouldn't hurt to try it. I could stop it at any time if I thought it wasn't helping. He had no adverse reaction to it and about 4 months later namenda was added. The combination seems to be working well for now.
He does watch television still but not always with his eyes open, so I think he is listening to it more that watching it. Also, while he is watching tv he always says "okay" every few minutes like he is trying to make sense of it all.
folly*, you are right that any little bit of good news helps. As the doctor says the longer he can keep his verbal learning memory the better.
We had a session today with the neuropsychologist and then with the neuro. TWICE I was confronted with a situation in which the doctor was asking me questions about DH's behavior while DH was sitting beside me. Both times I let it go on too long before I finally refused to answer, saying I didn't like the situation. I sent them a letter, we've had this situation before, it should have been in his file that he is blessedly unaware of his dementia, and there is absolutely no gain in confronting him with it.
In both cases they apologized, saying that they usually have a colleague so that one can talk to me separately but just today they unfortunately did not; the neuropschologist actually talked to me alone after I assured her that DH would stay in the waiting room without wandering away while we were talking. (He thinks the appointment is for both of us, so this seemed quite natural and there's no way he would have ventured down the hall without me).
I don't have the final results yet but both doctors think that DH probably has what they called a combination form of AD and FTD. There is a MRI scan scheduled for later in the fall. No mention of spinal tap and I don't think there will be since I made enough fuss asking "What's in it for DH?" They are doing FTD research so I don't mind one more test, perhaps it will advance the cause of science <grin>. DH didn't like it, but he cheered up again immediately after and doesn't seem to be holding any of my comments (to the doctors) against me. I think his score on the mini-test was WAY down from a year ago.
I swear if I hear that one more time, I'm going to respond the way we say we should to someone saying "let me know if I can help.." Well, When will you be available to spell me, then??
SCREAMING at everyone these days, because I have had the same responses from the Alzheimer's Association, (We're here for you...NO THEY ARE NOT.) Alz. Assoc. has NOTHING on the north side of Houston, but we have memory walks in several locations. Recall, they say 75% of money raised in a walk will be spent IN THAT PARTICULAR area. Trust me, it isn't. I asked specifically what they have done NORTH of Houston in the past year, NO ANSWER. Hospice Care is iffy, ... Medicaide is not in the picture. Alz. Association sent me a list of Elder Care Lawyers and all were at least an hour (one way) drive away from our very populated area. We are surronded by major malls, retailers, upcale homes, country clubs and golf courses every where you look..and they don't know anyone in our area. Why? Because they haven't looked!!!! They asked me to come to their office for an evaluation. I'd have to take DH or pay someone to stay with him. and, NO, they don't know what I'm going through...and they don't know how I feel. sorry.
Got the results of the MMSI this morning. It was 20, down from 26 a year ago. And I think the doctor helped him quite a bit, guiding towards the right answers. I was not surprised that he didn't know the date but amazed that he did not know the season: he said he thought it was "still spring" and in answer to the next question, thought that it was "April." (Maybe because he had just been asked about his birthday, which is in April).
Jeanette - Art did the same thing. He knew it was summer but said spring or winter. Knew we just had the 4th of July but said it was April. He always gets it right where we are - county, city, building, etc, but even if we have focused on the dates for days beforehand = misses them. I think part is the stress - he gets very stressed when going to the doctor now. In fact, when we first arrive his BP will be 148 or so, but after relaxing, laughing with the nurse some, it goes down to 128. He dropped from 27 in January to 23 in July.