The last time I took Lynn to the VA, he saw a new doctor. I understood the reason he needed to not take others doctors word, but test Lynn himself... but he got Lynn so upset and aggravated. He scores in the single digits, he is declining, how much more do you need to know? I thought the doctor was purposely trying to upset Lynn, and a couple of times I asked him to stop! He said, part of his testing was to see how Lynn reacted to different situations, what thinking process he used and what emotions he showed.
He is a doctor, so I guess maybe that is true. But, regardless, I thought it was demeaning to Lynn, to keep pushing home the fact that he DID have dementia. I got so agitated, the doctor had to ask me to leave. I didn’t! We go see this same doctor tomorrow. Can I, ask that all future memory tests be stopped?
Of course you can!!! You get to call the shots. You are the one who knows what's going on. You are the caregiver. You are the one who lives in hell and it doesn't need a label assigned by an outsider. At this point there is nothing that will change the course. Why put yourself and your husband through more stress. Am I being empathetic enough. You are doing a fantastic job.
Trying to get a diagnosis in the beginning, and then for the first year after diagnosis, since we were desperate for information, we went to one of the Alzheimer’s research centers. After a while, I felt like they were only using DH for their own research, and weren’t really giving us any information. We were not in any study, so we couldn’t see any reason to keep putting DH through all the stressful testing. (I don’t like tests even when I am doing well, so I can only imagine what an ordeal they are for somebody who has cognitive problems.) Several of the other caregivers that I know personally from support groups also became disenchanted with the whole testing program, and no longer do any kind of cognitive testing.
During the last group of tests, the doctor wanted to do psychological testing to see if DH was depressed. The test started with the question, “Are you satisfied with the quality of your life?” My DH, bless his heart, looked right at the doctor and said “Who in the world would be satisfied with the quality of their life if they have dementia?” He refused to answer any more of the “depression” questions, and I backed him up on that.
I think too many doctors see our loved ones as “subjects”, instead of as people. But we have a perfect right to say no to anything that distresses our loved ones. And if in the process we can educate a few doctors about how to interact with someone with cognitive problems, I don’t think that hurts anything, either!
Nikki, bluedaze is so right...My DH's neurologist insisted my DH have doppler scan of carotid artery cause he had a blockage repaired 12 years ago. DH had 6 scans in 3 years. he went from 48% blockage to 50% in that time. Dr. want to be sure there was good blood flow to brain.. What a crock. I stopped that and have since put DH in Hospice so no more neurologist. In hindsight I wished I had changed Dr's long time ago. This Dr. never explained one thing about the progression of the disease. I had to find most of what I know on this site. (&big tree murphy site) So he found that your DH has dementia. What is he doing for you? You are suffering too and the Dr. is making things worse.....I'm dont venting now.. luv you ( and bluedaze)
I'm not sure if my husband's cardiologist had the dementia diagnoses from the family doctor the last time we went there, but I think so. He did have the most recent blood tests and I know that the family doctor shares info all the time. He stopped all testing. My husband was having the carotid artery ultrasound every six months before that.
There is absolutely no reason to do testing on situations where treatment is not going to be possible. If your husband has dementia there are some surgery you do because you have no choice (broken hips for example) but others you do not do. In general they don't recover from the necessary surgery. Why do any other kind?
The neurologist's office does some testing on my husband, but not so much that it upsets him. They do the tuning fork thing too. They used it on me when I had my nerves tested, but I don't know what it actually does. As long as he is not upset, I'll let them continue. When he gets upset, it stops.
Like Bluedaze said, you call the shots and can tell the doctors no more testing or whatever. Also, no doctor should badger a patient at any time.
As a caregiver to a family member, you have to be proactive rather than reactive to whatever the doctors say. The doctor is with the patient for 5 or 10 minutes every couple of months. You are there 24/7.
Along with stage 6 alzheimers and parkinson's, Claude has congestive heart failure, high blood pressure, severe arthritis in his back, on coumadin for a heart valve replacement, minor kidney problems among some other things. He also is 86 years old.
I've told his cardiologist no more nuclear stress tests. They are too hard on him and he already knows what it will show and knows he is not a candidate for bypass surgery. No heart surgeon will touch him.
His primary care doc wanted to refer him to a nephlogist for some extensive and invasive kidney testing. We told him no. Same thing as above, it will be too hard on him physically and definitely mentally.
We're not against any tests, meds or whatever that will help him and/or make his life easier and more comfortable. It is the unecessary tests and things that we object to.
We all are going thru stress big time, why make it worse for everyone?
Glad I am not the only one! LOL blue your comment had me laughing out loud :) I wasn't sure if I could or not.. as I DID tell him to stop, yet he kept on asking him questions. When I asked him to stop again, he asked me to leave, I said NO! now stop! He FINALY did. It is clear he has dementia, I see no point in continuing these tests. When I go in tomorrow I will tell them I want no more memory tests done on him. I don’t need a number to tell me he is declining. Thank you all!! ~Nikki
My experience was as devasting as yours Nikki, and this was supposed to be one of the best places. I was frustrated and I couldn't do half what they asked my hubby to do. If there wasn't 20 people in the room, how could you be tested around that many people. I knew what was wrong, I just needed it in black and white.And that is about as much emotion went into them telling me its ugly name. My hubby is declining quickly, medications do not seem to work. So we are treating what needs to be and keeping him as happy and comfortable as possible. Do not let anyone tell you how to call the shots. They are not in the day to day aspects of our lives. They don't know that a day of testing adds a week of additional confusion for our spouses. I have already told everyone I know not to subject me to what my hubby has had to go trough. Had I not stopped it, I don't know what he would be subjected to.
Good for you gals. Remember, they (doctors) work for you and you pay them. You are the boss they are the employee. I was so pleased to hear my DH's Neuro say that any additional tests at this time are not needed and would be a waste of time. We see the dr. next week only because he wants to ck. DH regarding his meds.
My DH is only in stage 5+ and there will be no testing of any kind again. What will it tell? That he has AD? We already know that. If there is something that will cure him, then we can talk.
We've also both signed living wills and there will be no resussitation (sp) or any heroic life-saving things done. I'm really getting tired of these doctors. But, then maybe that's just me. :) grin
I'm thinking strongly about giving my husband's brain to the University for Medical Sciences under their Alzheimer's research facility afterwards - in order that MAYBE it will help in some way to discover a cure for the future. But not testing while he's alive.
Now, that sounds like a plan. My DH, his first cousin, his father, his uncle and maybe his grandfather all had AD. Perhaps there is a gene or a thread that might protect my children. They don't say anything but you just know they are thinking about it.
JudithB has said it very well. In any doctor's office, you, the patient (or in this case our spouses) are the customer. The customer (or their spokesperson) is always right.
I had done a lot of reading before putting my husband in a facility and come to the conclusion that invasive tests that were not absolutely necessary were not going to be done. I am open to a discussion but if I am not going to treat or it won't help my husband in some tangible way, the answer is no.
This is not a decision I made lightly, but length of life was not as important as whatever quality of life could be given to him in the time he has left.
Nikki, good for you to stand up to the doctor and get your point across.
Mawzy, there is a web site you and the other newbies need to see now that you are ready to think about what you will and won't let them do when the end of life comes.
http://www.hardchoices.com/toc_hc.html
You can read the book online or buy a copy. Basically he goes through all of the things you can have done to a patient at the end stages, and why and why not to do them. Some of them I'd thought about before, some not. The author is a hospice chaplain.
AND: if you - or your spouse - go to a hospital and you have a bunch of pre-existing conditions, and the hospital is a "teaching hospital" - connected with a medical school - you have the right (I think this is universal) to NOT be on the teaching rounds. If you're social and like talking to and educating sweet young things, go ahead and you can feel virtuous. I probably would take that route for myself. But, even nine years ago, being on rounds was torture for my husband. When he went in briefly a few weeks ago, I immediately said NO ROUNDS, and they believed me!
If you're not in a study, then what on earth is the point of the testing? It doesn't change the treatments any, does it?
Some people who post here have mentioned that some doctors do try to stress the patient. I think that's downright barbaric, and if anyone tried stressing my husband, the tester would end up being the one who is stressed. In the longitudinal study, one tester did upset my husband (she wasn't supposed to, she just has too much attitude), and I had it out with her and her boss. I gave them the bottom line, change to a different tester or wave bye-bye, permanently. (They believed me, too.)
Once the diagnosis is made, a neurologist has limited value, anyway. Maybe you need one to get the med Lynn is getting for his agitation? -- otherwise, a good geriatrician can handle almost everything you need.
Oh, and briegull, yes yes yes. When my first husband was in the hospital dying of cancer, they kept trying to bring in sweet young things from the nursing school to use him as the guinea pig. A dying man? in excrutiating pain? having totally inexperienced children intubate him and insert butterfly valves etc? Were they NUTS??? After a while, I stopped trying to be polite about it, and they finally got the message. "No" means no.
My husband didn't have any tests done, and the only medication he took was lexapro for his anxiety and blood pressure medicine. I think their is enough stress living with the disease, and neither my husband nor I wanted to add to that by dealing with doctors, tests or side effects from medications. He just wanted to accept what was and what was going to be inevitable, he didn't want to do anything to prolong it and I am thankful that was his choice, because I don't think I could have handled all that extra stress myself.
Geez, i hear it firsthand from a very upfront doctor very close to my family...some drs dont particularly WANT to diagnose AD (or terminal illness) until the last resouce has run dry as once that diagnosis is in alot of 'tests' that could follow and produce income to the ordering dr (or hospital) would usually be 'denied' by insurance -so the longer a 'definate' diagnosis is putoff the more they can try to diagnose and run up billing... wow. its hard to believe then again i guess no it isnt since so many of us had yrs without getting results and just having more and more tests.... and then the official outcome was the same anyway. divvi
I think it was me that mentioned that my husband's doctor stressed him during the first set of tests where we were looking for a diagnosis. It wasn't stress by him being mean, or mean spirited as several of you have experienced, Sunshyne especially. It was mainly by going on until he was tired and we got beyond his ability to hide what was going on. We spent almost two hours with the doctor on that visit.
All following visits have been basically stress free. They ask a few questions that he has either gotten right in the past, or where they think they didn't get a definitive answer. They do the tuning fork thing. They do the close the eyes and touch your nose, my hand, your nose, etc. thing. Basically those are "tests" that make sense because they show progression. I'm pretty sure the tuning fork lets them know if the nerves are still functioning depending on where they place it.
They did the clock face yet again this last visit because he has been all over the place with it. The most recent clock was a lot better than the one previously even though there were no numbers on it. There were 12 marks however. He will probably get a clock again next month.
My DH also got very upset when he saw a VA doctor. I told her to either stop asking him all these questions or change the way she asks them. My DH was ready to leave the office. Well she changed and all the question were like in a conversation and no more problems. Some of these doctors don't have a lick of common sense.
What is the tuning fork thing? All my DH ever had was the MMSE test which included the clock drawing and a physical exam by the doctor at the memory clinic. Meanwhile, the social worker talked to me and got a brief history about his memory and confusion. I've wondered if he should have more tests but after reading this thread, I think not.
Dazed, There are a lot of tests (labs, imaging, and neuropsych) that are usually done in the diagnostic phase. They can help a dr. pinpoint or exclude certain problem areas, and possibly show a treatable or curable cause of confusion. I think these are important before you or the dr. determine you are dealing with AD (which is a diagnosis of exclusion). The tests are needed to exclude other diagnosis.
But the testing done after that, especially annually, may or may not serve a purpose worth pursuing. It's going to depend on the test, the dr., the patient and the caregiver as to whether that is useful. Some doctors will only conclude it is AD if they can see a progression, depending on the stage when they see the patient initially.
The same practice also did a test on me on the nerves on my legs. I have a leg that goes numb, and the tuning fork was the first part of the test. So I know what it feels like. They set it off and then put it on various parts of my legs. Did I feel it here? Did I feel it there? I also got poked by a toothpick, and had mild shocks of two different types. Mostly uncomfortable, but in spots painful. They have never done any of that on my husband.
It might be something they are doing because of how he got the dementia. If he has Alzheimer's it is in addition to the primary Vascular Dementia (only his isn't from strokes so even that isn't the classical form of it). Or it just might be this particular practice that uses it.
PatB, thanks for the explanation about the tests. His primary care physician ordered an MRI two years ago when I first mentioned the memory problem. Also a test for blood circulation, and some blood work. All those were normal for his age. His next appointment with the clinic is in October. I need to ask the doctor there about more tests. We all wish they could have something besides AD, something that can be treated. But he has all the symptoms and signs of AD.
And Starling, his primary care doctor did do the fork tuning thing when he had his last checkup. I just didn't know what it was called.
Thank you all for you input. The doctor wasn’t mean… he just bugged the hell out of me. He kept asking Lynn memory questions. As I said, where that was the first time he saw him, I could understand him wanting to do a couple of test. But he pushed Lynn, and I found it demeaning. Example, he asked Lynn to draw the clock, he couldn’t/ The doctor said, surely you know how to draw a clock. This just pissed Lynn off. He said, he could but didn’t want to… he had put him on the defensive. So the doctor drew a circle and asked him to put the number on it. Lynn started with 1 (in the 3 position) until he ran out of space … having 18 numbers on his clock. A GOOD doctor would have learned all he needed from that and left it. But he didn’t…. he then asked Lynn to show him where 4:45 was on the clock… HELLO!!! He couldn’t.
Then he asked him what year it was, depending on the day, Lynn thinks it is anywhere from 1970 to the late 90’s. When he asked him, he said it was 1985. Ok clear enough… he has dementia..move on. But NO! He then told him it was not 1985, could he tell him what day of the week it was? He kept on and on… and poor Lynn, he was feeling more and more frustrated. And I just wasn’t going to stand for it! That is when the doctor asked me to leave, fat chance buddy! I was all revved up for this appointment tomorrow, but they call and canceled it. So I will just make it clear next time, I do not want Lynn subjected to any more memory tests. CARGIVERS UNITE!!! LOL I love that
About having those sweet young things practicing on an infirm old man. My mother-in-law died after 63 years of marriage. He was diagnosed with advanced AD right after she died. She had kept this from all of us. He had prostate cancer and had to be hospitalized. They sent in some sweet young thing about 19 years old to catharize him. He went completely nuts. I happened along and they were going to sedate him and restrain him. I stopped that. I told them that he'd been married to the same woman for 63 years. She'd only been dead for about 6 weeks and then they had some young girl in there to manhandle him? Why can't someone use their head. If he needed that procedure, how about a male nurse or orderly. I wasn't noisy but they knew I was steamed. And, he didn't need sedation or restraints. They had a straight-jacket out ready to put on him. The poor old soul was terrified.
Just wanted to add my 2 cents. I have stopped all testing on my DH because at this point in the disease it is POINTLESS! He has Alz and there is absolutely nothing any doctor can do to change it or delay the progression. All I wish for him is to be as comfortable as possible and to be as "happy in his skin" that he can be.
So Nikki, stand your ground. No doctor or anyone else should be causing your DH any further agitation than he feels daily from this dreadful disease. Agreed, caregivers UNITE!!
Nikki, my husband's doctor asks all of those questions too, but he isn't mean spirited about it, and he isn't surprised when my husband doesn't know what the year is. I mean he didn't know six months ago either. They just go on to the next question. Your doctor is a mean spirited jerk!
Most of the stuff you are describing are on the mini-mental. They don't do an official mini-mental test on my husband, they just ask questions in between doing some of the physical testing with the tuning fork or the closed eye tests and move on pretty quickly.
They are probably trying to figure out what stage he is in, but frankly, they would get more from talking to you and reading a log you are keeping (if you actually keep one). When the mini-mental gets down to single digits it doesn't tell them a whole lot.
A very long time ago, before the current format of this board, I posted a question on "How often do you go to the Doctor's and why?" If we know our spouse has AZ and they are taking the only available medicines to slow down the progress, what do we gain by having these heart wrenching tests? I have not subjected my wife to a neuro doctor in three years. I take her to our family doctor for a yearly physical and for any other issues, but that is it. DickS
Because of my husband's high cholesterol, he has been taking Lipitor for several years. Every year the doctor has to see him and do some blood work before prescribing his refill. He also still gives him an annual physical. But we also see the neurologist twice a year, wherein I e-mail her an update on my husband's symptoms and actions and a list of what he can no longer do, so that when she sees him she can check these things for herself, and she writes the Razadyne and Namenda prescriptions. I am more comfortable with his neurologist, and also, she has several AD patients and some of the things I do for my husband she passes along to them. I told her about this website, and she has passed it along to her other AD patients' wives as well. My husband hasn't undergone a test since the first one when he was diagnosed. I think a lot of the people go to University hospitals that are into research and those places do the studies to monitor the progression of the disease for those studying to find a cure. That is also why I am thinking about donating my husband's brain to the local state university hospital research center. Our children and their children may benefit from this research. I sincerely hope so.
Thank you all. Yes Starling he did do some of the mini mental questions, but he also did things no other doctor has ever done. He said he was "pushing" him on purpose to see "what thinking process" he had and used, as well as how he reacted. I can only assume he did this because it was the first time he had ever seen us, and I was looking for some medications to curb his anger and aggression. If he wanted to see why I felt Lynn needed it, he found out real quick! lol
As for neurologists, mine is a Godsend. Lynn's medical is all through the VA, and I am sorry if I offend anyone...but he hasn't seen one more than average doctor there. Whereas my neurologist is excellent in not only knowledge but "people skills" as well. He has cared for me since my diagnoses back in 99 and we have come to truly care for one another. When things got so bad a few months back, I called him in tears! He saw Lynn the very next day.... free of charge. Through him we got the seroquel, and our lives were changed. I agree dick, I want no further "proof" of how bad Lynn is getting. But, If for some reason, the VA insists Lynn continue to have these memory test to monitor his decline, I will take him back to my neuro.
Mary, I told my neurologist about this site as well :)
We do 4 visits a year with the family doctor, blood tests every month because of the blood thinner primarily, fasting blood test once every 4 months because of the other drugs and just before that family doctor visit. He controls all drugs and all blood tests because I don't trust the rest of the doctors not to test for things already tested for.
We were seeing the cardiologist twice a year. At this point we may not see him again even at the end of a year. He has stopped all testing except for the in-person pacemaker check (twice a year) and the telephone pacemaker check (every 5 weeks). He controls all of the pacemaker stuff, but prefers that the family doctor control the drugs (which is why we ended up with that system). These two doctors really trust each other.
It looks like we are going to 3 or 4 visits a year for the neurologist. So far that hasn't been a problem. They wanted to do blood tests and I said no, talk to the family doctor. It turned out that what they wanted to do is already being done on a regular basis. I'm not sure I understand why we are upping the visits, but on the next one I am going to ask. At this point I think I need a visit with that doctor more than my husband does. I've got questions I don't want to ask while he is there.
Slowing down the number of appointments has helped keep my husband calm. I'm going to do more of that.
OK, Nikki, that is exactly what I think the "bad" tester was doing with my husband, too -- telling him he is giving her the wrong answers, and then even arguing with him about why she's right and he's wrong. The people who run the research center insist their testers don't do that, but my husband described what she said clearly enough and in such detail that I believe him absolutely.
Before trying to work with my husband, the new tester they assigned to replace the "bad" one asked me what I thought the problem might be. I told her that no matter what her boss thought, the "bad" one was flat-out telling the patients they're wrong. And OF COURSE that upsets them! Dumb, dumb, dumb. So she administers the same test, and my husband comes out of there just tickled pink with life because he believes he did extremely well, there was just one question that was kind of tough, and when will I get the results so he'll know if he got that one right? He actually had fun, over lunch he kept burbling about the lovely conversation he had with the new tester, and he was raring to go for the second half of the testing program that afternoon.
As carma says, "Some of these doctors don't have a lick of common sense. "
Every test under the sun has been done to my hubby, physically except for uti's, theres no problems. Meds would aggravate his already aggravated state according to neurologist as most of the damage is in the areas that affect that. We go every 6 months to family dr. or more often for uti's or other things like flu, but she agrees. What more can more neurological testing do? He and I have both been through enough. The doctors make money and we shell it out. At the beginning of our journey, when I saw problems, every doctor I took him to said he was fine, made me feel like I was the one with dementia. It wasn't until I almost had a nervous breakdown that anyone would really believe that at his age he could have a problem. No one torture for him or me from people who won't listen,sit there blankly as he does and have the bedside manor of a peice of wood.
I understand that the researchers use these tests to develop better ways of diagnoising, but come on. Lets see them spend a day with us. They could learn more from that that an mini exam.