Ironically, we were also visiting our neuro yesterday morning. I had noticed what I thought was a rapid decline since our last visit (April). However, Steve's MMSE score was actually HIGHER yesterday! It seems to me that one problem with the MMSE is that it mostly tests memory; however, in AD, there are so many other brain functions that are impacted that the test ignores.
Our neuro explained what was going on this way: there is no "speeding up" of the disease here. What is happening is that agnosia and apraxia are starting, and it is more difficult for my husband to now hide his deficits. Maybe something like this is happening to Sid?
Sorry, but I do not see any point in these tests. We know how are spice is doing, good, bad or indifferent. I believe some of these tests only tend to frustrate them more than give us any answers. No more tests for my DH. He is what he is.
Since I didn't know what agnosia and apraxia is I looked it up:
Apraxia (called "dyspraxia" if mild) is a neurological disorder characterized by loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them. Apraxia results from dysfunction of the cerebral hemispheres of the brain, especially the parietal lobe, and can arise from many diseases or damage to the brain.
There are several kinds of apraxia, which may occur alone or together. The most common is buccofacial or orofacial apraxia, which causes the inability to carry out facial movements on command such as licking lips, whistling, coughing, or winking. Other types of apraxia include limb-kinetic apraxia (the inability to make fine, precise movements with an arm or leg), ideomotor apraxia (the inability to make the proper movement in response to a verbal command), ideational apraxia (the inability to coordinate activities with multiple, sequential movements, such as dressing, eating, and bathing), verbal apraxia (difficulty coordinating mouth and speech movements), constructional apraxia (the inability to copy, draw, or construct simple figures), and oculomotor apraxia (difficulty moving the eyes on command). Apraxia may be accompanied by a language disorder called aphasia. Corticobasal ganglionic degeneration is a disease that causes a variety of types of apraxia, especially in elderly adult.
Agnosia is a rare disorder characterized by an inability to recognize and identify objects or persons. People with agnosia may have difficulty recognizing the geometric features of an object or face or may be able to perceive the geometric features but not know what the object is used for or whether a face is familiar or not. Agnosia can be limited to one sensory modality such as vision or hearing. For example, a person may have difficulty in recognizing an object as a cup or identifying a sound as a cough. Agnosia can result from strokes, dementia, developmental disorders, or other neurological conditions. It typically results from damage to specific brain areas in the occipital or parietal lobes of the brain. People with agnosia may retain their cognitive abilities in other areas.
The explanation that they appear to be going downhill faster because it is getting harder to hide makes a lot of sense. Or it could be they are just exhausted from hiding it.
We also saw the neurologist this week and DH' score dropped 2 points to 21. He is so familiar with the test, he has it about every 6 weeks because of the drug trial he is in. He even knows the words to remember are apple, table,penny. Why they use the same words, I cannot believe. When the receptionist had Bob sign the privacy statement, he did not know the date. She said it is the 21st. Then he looked at me because he did not know the month or year. I am also seeing a decline. If I go on a short errand, 30 minutes, he is waiting for me on the porch. If I am gone longer, he calls me on my cell or calls our kids to find me. I am having cataract surgery next week and I know that it will be difficult for him He will forget what I tell him about it, even if I write it down. I really need two people, one to drive me and one to care for him.
Ironically, my DH WANTS to do the tests. He had the full 6-hour testing done in January 2008, and was told he had MCI. The testing was repeated in January 2009, and he was told it was probably still MCI, but it could be early dementia. The doctor said there was no need to repeat it, but Bob said he wants to do it again in January 2010. As long as they are saying MCI, he may see it as a way to prove to me that he's not too bad and that he can keep driving!
Today demonstrated the futility and inaccuracies of these stupid tests. He gets a 28 on the mini mental. He's stable, according to the records, and this afternoon he asks me when I am going to make an appointment with our lawyer to bring him some paperwork. I repeated the entire conversation we had last night about me going to the lawyer after my PT on Friday. He remembered NOTHING of the previous night's conversation. Nothing. Then, I swear, 15 minutes later, he comes into the kitchen and asks me when I am going to the lawyer. I repeated the conversation again, and he said he didn't remember discussing it. YIKES!!! So much for a 28 on the mini-mental.
Thanks for the apraxia definition. I hadn't really glommed onto that one yet, although it is a most apt descriptor of a significant problem here at my house. At any rate...it's all going downhill. The ground is shaking, and I can only wonder what the next plateau--if there is one--will look like. As for tests, well, I'm sure they'll be some at our next clinical study check up, but those are now (fortunately) rare.
I'm with Vickie. I will never put Carol to another mental test. I have only done it once and it was terrib le on Carol and therefore me. I really think the medical is primarily trying to milk AD for all it is worth financially. What the Hell??? the patients have AD and there is no big mystry to that. If we could switch the funds from MRI, CAT, EEG, etc to some of the research that might find a cure to this horrible disease. The neurologist that we had tried for several years to solve the "eposodes" that Carol was having with days of shaking, nausuau, vomiting, total memoey shutdown and finally found that it was a simple heart "pausing" occasionally. We put in a pacemaker and for 3 years ----no episodes. But still plenty of AD symptoms, I love this site cause we try to help each other exist as caregivers. The medical jerks sure don't give us much help. Only test I might allow now is for UTI. And change in depression RX's. Just swsitched to Risperadol and see a major improvement in morning personality for Carol.
Can we turn down a mental test and tell Medicare to send the money to a research lab???????? bill
ps. CBS just had a good sugestion similar to this tonight with Katie Couric.
My husband was so unhappy with the last mini-mental that I decided never again.
I mean why bother. He no longer has words for mail, newspapers and garbage. The place where we buy the newspapers has been "the barn" this week, but I don't know it that is what it really is. He can't ask the questions he wants to ask. I really don't care if he is an 8 or an 11 at this point.
The apraxia definition is very helpful for me right now, Charlotte; thanks. It's just in the last few weeks that I can say go this way and he'll go THAT, without trying to be obstructive. Take off your trousers and he'll take off his shirt, trying to be helpful! The agnosia is longstanding.
The other day at the neuro (we've noticed before that many of us are on the same schedule, like women in an office and their cycles) he didn't give him the test, but asked questions etc and could see that there was decline.
Today a nurse from VNA came out and they are putting him on "palliative care" - not hospice but could transition to it, give him p.t., etc. I had called the other day when he had refused to walk down the hall to come downstairs for breakfast; of course he hasn't done that again although the moaning is loud. We went over his meds. She was mightily confused when I wasn't telling her about the celexa, the prilosec, I forget what all. I said, he's NEVER taken those!! and she said that's what your PCP said.. we went over and someone must have put half a dozen different meds in his record that he's NEVER had!
A lot of the mini mental seems to relate to words and speaking. Well, my DH speaks perfectly, know the names of everything, etc. He doesn't know where we live (for the past 10 yrs) how to call 911 in an emergency, how to use the tv, phone, How to shave, or chose his clothes. But he knows the names of things. Those tests don't really do much, and he thinks they are stupid. I don't disagree.
The differences in symptoms from one AD patient to another can be caused by the fact that the AD affects different parts of the brain, so in one patient one part may be affected sooner or later than in another. Now the neuro thinks that dh may have a form of AD which has been affecting the frontal lobes early. This may explain why he has many symptoms that have often made me think he had FTD.
Anyway, we are scheduled for an MRI scan on Thursday to try to get a better diagnosis. They can compare with the former MRI one year ago. I'm going along with another scan it because - the hospital is connected to the Rotterdam University and they are doing FTD research. - I think dh will go along with it fairly easily after he gets his morning Risperidone. - I am curious about getting the best possible diagnosis, even though I know there will be no change in the "treatment" This young doctor on FTD research has asked me to compile a chronological history of the symptoms. It's very hard to look back and remember when certain stuff started. But I am going to make a serious project of it, and have asked the children to contribute. It will be worthwhile as part of our family history.
In a health magazine I got recently, there was an article about different types of cognitive and memory tests. One small point said: “In a recent U.S. survey, not one neuropsychological test incorporating distraction was listed in the top 50 most popular tests used by neuropsychologists to measure memory”. I didn’t even know there WAS such a thing as tests incorporating distraction! I think that would really be a more valid test for things like driving than the MMSE. They went on to talk about other tests that I know have never been performed on DH. I think at some point the medical community is going to have to acknowledge that their standard tests are not all that valid for some conditions, like dementia.
At the very beginning of this journey, DH had just about every possible test. But now we have stopped having the neuropsych tests. At the last one, one of the first questions—to measure the level of depression—was “Are you satisfied with the quality of your life?” My husband, still pretty articulate at that point, said “Are you kidding? Who would be satisfied with this?” He refused to continue with that test, and I agreed with him. When I read the doctor’s notes later, he said that DH had mental health issues in addition to dementia. I don’t think doctors like patients who are not totally compliant with everything.
I might feel differently about having these tests if we ever got any valuable information from them. We started to feel like the tests were for the benefit of the doctors, to add to their research, but the doctors weren’t the ones paying for the tests. Our family doctor handles just about everything for us now. Since he knew DH before the diagnosis, he has a totally different attitude toward him than the “dementia” doctors we’ve seen.
I think that the test with distraction is the one where they tell you the names of three things, ask you a bunch of other questions and then go back to asking you for the names of the three things.
The cognitive therapist would take out pictures of three things, make sure that my husband had seen them, "hide" them out of sight while he watched, did a bunch of other things and then tell him to find the pictures. I'm pretty sure those are distraction tests as well.
Stroke patients who have the ability to get better can be trained with strategies that can help you find ways to remember where you "hid" things. Dementia patients can't learn those strategies. It was one of the things that told her we needed to go and visit the neurologist.
We are in a different situation from most of the others here because we came to the diagnosis through therapy and a therapist. Some of you fought for years to get a diagnosis because your LOs fooled doctors. You can't fool a therapist who sees you for 2 hours every week for 6 months. Actually she wanted my husband to see the neurologist after the first month, but kept him on until after the first visit with the neurologist.
The last time we were at the VA they wanted to schedule a number of tests and another scan. We had an appt. the following week with the neuro and I ask him about my hubby having these tests. His reply: " What do you want to do that for you know how he is and what he has. He is taking the necessary medications to help keep him stable...so why put him thru those test?" I agreed and when I got the appts. from the VA I cancelled them.
The more I read and the worse my DH gets the more I believe the tests mean very little except for those taking the tests to help others in various studies. Nothing is going to change this horrible journey. A year ago my DH was going downhill at the speed of 30 MPH now he is going downhill at 50 MPH. That is the best I can explain his downhill progression. It is picking up speed. And, as terrible as this may sound.....I am glad his condition is picking up speed.
We are going on a cruise next month and one in Feb. We really can't afford two cruises this close together, but I want to do this while he can enjoy it and I can too. I really don't believe he would be able to do a cruise in another year.
I don't want anymore neuropsych testing, but I sometime after the first of the year, I would like another MRI. Since he had frontal lobe shrinkage show on the first one I would like to know if anymore has occurred.
I just gave my dw the slums test and the mmse test, and probably saved myself thousands of dollars by not letting a neurologist administer them. I think the results would be the same, totally useless and uninformative. Heck, who needs to count backwards from 0100 by 7's....or who cares what day month and year it is////everyday is groundhog day.
Our last vacation was a cruise. My husband did better on that vacation than on the long bus trip vacation to Williamsburg, VA the previous year. This was just before diagnosis. My only regret is that when I wanted to schedule one last cruise to the Panama Canal (that he had always wanted to see) that I listened to him when he didn't want me to. I know now that we could have done that last one. He was still driving when we would have been on the ship and was healthy enough to have handled it.
I've cancelled two cruises while we got the dx and meds figured out. The main problem with travelling had been the anxiety and impatience combined with rudeness. After a nasty confrontatiion with a security guard on our May cruise I said NO MORE. Actually he feels pretty much at home on ships, since we've cruises so much all over the world. He's spent a total of 333 days on cruise ships in the last six years and the layout on all the Princess ships is pretty much the same. Also on the smaller Holland-America ships. He doesn't get lost anymore. And he enjoys the entertainment. The big problem is his total lack of socializing with anyone but me and it gets kind of boring to always eat alone, hardly ever mingle with others.
It would be a great idea for the neurololgists to take the time to listen to the spice, take them seriously and not believe that everything has to be put into a neat little slot. Example: DH was a very successful optomotrist, totally devoted to his work, before retirement, but this morning, after he'd finished reading the paper, I asked if he'd seen the big article on the research being done to cure blindness. It was a full page article with large headlines.....hard to miss. He hadn't even noticed it was there. This tells me more than the tests do as far as awareness of current news.
There are thousands of little clues that our loved ones display to us and/or try to hide from us that no test can catch or evaluate. This is why it is so frustrating when others say "He isn't so bad is he??" THEY DON'T LIVE WITH HIM DAILY...I DO AND THEREFORE, I AM THE ONLY ONE THAT KNOWS HOW FAST HE IS GOING DOWN HILL. I feel so lucky to have the neuro that we have because he relies on me to tell him how bad my DH is.
Example: Yesterday, I discovered he no longer knows his e-mail address on his computer unless he looks at a little piece of paper that he thought I didn't know he was using. It is things just like this and a hundred other little things that makes us the experts not the doctors. That is why I readily agreed with the neuro not to have any further test. I don't need the trouble of going to any more doctors I am sick of it. There is NO cure... There is NO getting better.
I have and will continue to do the best for MYSELF and my DH during this journey but I am not going to do anything that I think will not help him just to satisfy my curiosity of ....Is he level 3, 4, 5, 6??? I know he is getting worse and that is all I need to know at this time. I don't fault anyone else or stand in judgment of anyone else that feels the need to know more. This is just my position and I find a lot of comfort in not caring what level or what comes next or when it will come.
Vickie: Thank you for your agreement comment. I know when my DH was first diagnoseid I had to read everything I could get my hands on and had to be on every blog that would give me clues of what I could expect and give me comfort when I needed it. But, now there is not that longing or need to know anything I don't already know. Also, I have resigned to the fact that we are in the hands of our Lord and what will be will be. It has given me a lot of peace to accept his condition and just live a day at a time.
I found that early on it was so frustrating to be around others that seemed to think that saying "well he isn't so bad" would make me feel better. But, all it did was cause me pain and frustration. Now, he does not seem to want to socialize and I don't either. We live in our strange little world and basically have one couple that are friends and family that accept us for what we are.
He has violent outburst about every month and that is the worse part for me. I have explained to him that I cannot handle those. He seems to understand and tries to control himself. He knows that I will not hesitate to put him in a home when I can no longer cope. I think making that decision has brought me peace. I would be no good to him if I am ill or a total wreck. He has delusions that things are happening that are not happening...this is hard to accept. But, if I just agree with him like what he is thinking is a fact, he soon forgets about it.
I want to encourage others to try your best to accept this condition as a journey and not be over taken with stress for all the twists and turns that have little or no meaning and cannot help you on this journey. Try your very best to accept your fate and live each day to the fullest and don't fret about the unknown it will be revealed soon enough. I talked with my DH like he understands me but, I know he is only understanding bits and pieces. If his responses don't fit the conversation I ignore it or agree with him. He thinks he is fooling me but he isn't. He doesn't understand TV programs but he acts like he does so I go along with it. I try my best not to get frustrated with him. He is a sick person and cannot help his condition. I have taken complete control of our lives. I make all decisions. I keep myself busy with craft projects I enjoy and will give them to the poor at Christmas if my family doesn't want them. You need to find something that is just for "YOU". You are more important now then ever and never forget that. It can give you a feeling of power that maybe you never had and it can bring you peace. Remember without you your love one would be helpless....it is all about YOU and not them.
Judith, I agree fully about the feeling of power AND about the peace that comes with acceptance.
But -- I did go all out to get an anti-anxiety medicine which has so far given DH more peace and contentedness and largely controlled the raging. I feel that lessening the anxiety was the most helpful thing I could do for him right now, since there is medication for this, and it is working. Risperidone has not made him sleepy or changed him in any other way, so if your dh's raging continues to be a problem -- look into it.
You expressed exactly what I feel - I LIVE WITH HIM. I KNOW WHAT IS GOING ON. I don't care which test says what, I see the decline.
We went out to dinner with another couple last night - members or our support group, so we're in the same boat. During dinner, we talked about Sid going to a street fair today (Sunday) to help his friend sell his doggie treats. About 15 minutes later, Sid asked me what he was doing tomorrow. Later on, he asked me again. Nothing is sticking to his brain. As I said in the blog - Teflon Brain Syndrome. His short term memory was the first thing to go, but it has never been this bad, and these incidents are occurring regularly. He may be able to draw a clock perfectly for the mini mental, but he can't remember a phone conversation as soon as he hangs up. He can repeat, "No ands, ifs, or buts" on the mini mental, but he has NO IDEA WHAT IT MEANS.
Tonight my husband had been very good all day, sitting and watching Bill COsby's family education show in rerun, and other stuff; I took it easy because I'd been doing too much on the computer yesterday (but I solved a problem that had been bugging me - YES!!!) Anyway, he was good about getting into his pj pants and I gave him a hug and he hugged me back and said I love you (for once NOT responding to me). He was laughing and I was, it wasn't desperation. I can't remember the last time that happened, but I'll cherish it!
This is the type of things that no one except you as the care giver sees or would even be concerned about. Yesterday my DH spent over an hour on the back patio trying to fix an outdoor light fixture that has not worked for several years. He cleaned the glass and worked like he knew what he was doing..... But, I knew he didn't have any idea how to fix that light (yes 4 years ago he could fix anything around the house). This is the what was so funny (but no one is laughing) and it is so typical of what is happening every day now. After he had replaced the light fixture that still didn't work he came in the house and sat down with a glass of ice tea. In about 10 mins. he said...."I think I will go outside and fix that patio light that isn't working." He was very serious like he had not been working on it just 10 minutes earlier. I smiled and said..."Don't worry about it today it is too hot outside now to be doing that so do it tomorrow."
I do believe the drugs Razedyne and Ameneda are not doing there job any longer. He looks so normal. He is only 62 years old. How sad.
Judith - my hb is on galantamine(Razedyne) and I think it has not done anything. He can not get the Namenda until he is moderate - VA will not cover it. I will follow-up on a suggestion to up his Prozac as I was told depression can mimic going downhill. He is only on 20 mg which isn't much. My hb just turned 62.
Charlotte: My DH gets his meds through the VA too. We were told they would not approve Namenda until he is severe. I told them when he gets to severe I don't want him taking any medications. It made no sense to me. Namenda is suppose to keep them stable at a given place for a longer period of time. Who would want to keep your loved one in a severe state any longer then is necessary.
I agree wholeheartedly with you - who would? I do know there are those people who can not let go and they are the ones who will not give up hope or are not ready. But are we really ever ready? We just know what has to be. I do not see it as giving up hope, but not making this disease linger on any longer than necessary.
My FIL had not been on anything, but after my MIL died, he went into the VA where they put him on Namenda. My husband and his sister want them to stop, but their brother who is guardian says to keep him on it. I don't think he really cares one way or the other - IMO. For my FIL, he was diagnosed in the late 80s - it is like the disease has stopped its destruction. Maybe if they stopped the Namenda he would pass on and be out of this 'limbo' state he is in.
Charlotte: That is so sad. Why don't people understand? It is the quality of life that is important not how long you live. I know it is not going to be easy if and when I have to face putting my DH in a home or whatever. But, it if it has to be it has to be. I know I could not lift him or get him in and out of a tub...there are just so many things I know I could not do and maintain my own health and sanity.
DH is in the mild stage and has been on Namenda since March. Everything I have read has said the Aricept and Namenda work better together. I know they have helped my DH.
Some of do see an improvement after both drugs are on full dosage. Some never see an improvement but think that the slide down slows down. Some can't tell if anything is helping.
One thing that is pretty sure, the drugs do not slow down the illness itself, just the symptoms of the illness. They don't add a day to the lives of our LOs, just make it easier on the caregivers to take care of them and improve quality of life a bit.
Starling , you hit the nail on the head. That's exactly why, when Arecept was stopped the first time, years ago, my husband suddenly lost any ground gained. It wasn't ground gained, it was ground not yet lost. I see, once in a while, what's next. and then he's the way he is again. but what I saw is coming as surely as day follows night. We just get a quick glimpse of it, Maybe it's even where they would be now without the drug. DH has been on Exelon for about 4 yrs and was on Arecept for 3 yrs before that. all the drugs do is kind of mask the symptomes (at least I think that's what happens in his case)
I like having the symptoms masked even if that's all Aricept and Namenda do. My DH improved with the drugs and has hardly declined in the two years he's been on them. Like chris r, I see a glimpse occasionally of what's ahead and if that's where he would be without the meds, I wouldn't want to stop them.
I agree with you, Dazed. My husband has been on Aricept 6 years and Namenda 4. He hasn't declined a lot during those years, but this year I can also see what might be ahead. I won't stop them at this point.
Hello, I havent posted in a long while but now I have a situation in the near future that is right on this topic and can benefit from some real expert advice. I too do not find much value in repeating limited scope, subjective tests that dont really change any threapy however. . . . I applied to get my 59 y/o DW on SS disabilty in February of this year. (she was called MCI at her Dx 17 months ago probably the same today. I dont think I would call her an AD stage) We now have an appointment with the SSA doctor/clinic coming up in 2 weeks.
We have not (yet?) been turned down for the SSDI but I do know that getting approved the first time for a brain problem is not easy. The forms only ever asked about her legs, arms, abilty to walk etc. which of course are all perfect so she doesnt look 'disabled'.
She was forced out of her RN career 3 years ago. She is self care at home with all her ADLs and even still drives (locally to her senior lunch program and church) She does have all the cognitive slip ups that are familiar to everyone on this board, but I think it might be best if her symptoms are really 'acute' for the SSDI doc.
She is on Aricept . . . . . . . . . . Do I risk stopping the Aricept a week(?) before the exam so that her 'scores' might get her more of a guaranteed SSDI approval? My worry of course is that if she 'gets worse' for the exam, she might not come back to 'normal' afterwards. . . .
Scores and score changes dont mean much unless there is money riding on them. I donno . . . .
Her being on Aricept is, I believe more valuable than trying to tinker with her testing results. At any and all points you should be informing them as completely as possible of her actual condition, linking any physical conditions to her mental issues. i.e. an no longher work at her Nusing Profession because of cognitive losses". Since they do get data from her Drs. messing with her meds could be detrimental to your case.
My understanding, because I have not done this myself, is that what you need are signed letters from all of her doctors. When our neighbor group got SSDI for my next door neighbor they made sure they had signed letters from ALL of the doctors, not just about her dementia, but also her heart condition, and all of the other things that were wrong with her. The more conditions your wife has, the easier it will be. Oh, and she was an RN who could no longer work because of her cognitive condition.
By the way I happen to know that carosi has successfully done what you need to do. If she can no longer work because of her condition make sure one of those letters says so clearly and plainly.
I have never done this before. The SSDI instructions clearly state that a 'letter from her' doctor is basicly worthless. Not that our Family Doc really Dx or even properly asscessed for AD but she trusts our (my) experience as RNs and will write prescriptions for pretty much whatever we want, which has its advantages ;-)
We signed approvals for the SSA to get records from the PMD and her assessment/Dx from the California Alzheimer's Program. http://www.cdph.ca.gov/programs/alzheimers/Pages/default.aspx (THEY did do a FULL eval and assessment from which I learned a lot! but it wasn't covered by our insurance)
So I assume the SSA has all the Medical records. This is a referal to a "Medical Evaluation Center" (seems like a contract MD). The letter came from a somebody who's SSA job title is "Disabilty Evaluation Analyst III".
I dont know if I will even be allowed into the exam. I dont know if the MD will be interested in anything I have to say. I am compling a list of her social and ADL errors to share with the MD.
At 59 she has no other med problems, meaning she is gonna live with AD for a long time :-( So the the SSDI will be based soley on the mental exam.
Her job loss was getting fired from 5 jobs in 2 years. Each time for 'incompetence' and 'poor work habits/output'. (wanting to repeat a patient's medications because you forgot that you just gave them aint good for an RN to do) We all know this as AD but on an application it looks like just laziness.
There are appeal processes listed in the original application for when you get turned down. Fighting bureauacies is such a pain. I have done it successfully many times but it gets ya so down so I would like an approval the first time.
We are not desperate for the money (I still have a good job -Thank you, God!) but I need to get her started down the path.