I haven't been posting for awhile, but have been reading some of your posts. A recap. My hubby was officially diagnosed Dec 12 last year with Alzheimer's. He is 63. We were told prior to this that he did have some form of Dementia and I think he has had it for at least 4 years. It is progressing slowly. His is at the back of the brain at the moment. This means he has trouble problem solving. He can't drive, can't change a light bulb, can't make a sandwich or use the stove,can't pull up his zipper on his coat, can on his pants. lol. etc., etc. He is having trouble with some words now. From all outward appearances he appears to be normal unless one has a deep conversation with him. He can ride his bike on the bike path and walk to the stores and doesn't get lost.Can still use his credit card and handle money when purchasing things. He only buys chocolate and granola bars.
My question is, when we go to the neurologist on Tuesday, is it okay for me to tell them I don't want them to do any tests, x rays etc.. When he wrote a test last July, he cried after as he was so shocked at what he couldn't answer. He is very happy, accepts his diagnosis and says " It is what it is Julie, we just have to get on with it" I really can't see the point of him having any tests at the moment. Not until he needs to be assessed in the future for his need to be in a nursing home. We live in Toronto and he would have to undergo this type of testing in order to qualify to be put on a list.
I just don't want to upset the apple cart so to speak. We are doing so well after months of my finally accepting the diagnosis and not crying all the time. We are happy today. Has anyone else refused testing at their appointments? Thanks so much.
Julie, I would definitely discuss this over the phone with the neurologist's office before you go in for the appointment. The only tests our neurologist gave DH were verbal--like saying apple, penny, pin…waiting a few moments--then having DH repeat the words. (Which he couldn't do and didn't care.) There were never any written tests that I recall, but we were in the States, and you are in Canada, so maybe they do things differently. DH did have an MRI of the brain (or CT scan--I really don't remember) which indicated the definitive diagnosis of Alzheimers. But DH didn't seem to understand the full ramifications of that, and forgot about it anyway--was never upset about it--which shows how far gone he was by that time. I hate the thought of your husband being upset to the point of tears by the testing. I mean, what is the point? Can't they just talk to you to be able to know what stage he is? This disease is enough of a pain as it is, without making it even worse for the person.
As I've said before, the best doctor to care for your DH, and you, is your family doctor. The neurologist is helpful in the beginning to confirm the diagnosis. After that, unless medicines are required to control behavior that your PCP is not familiar with, there is no further need for the neurologist. There is no point in doing the tests once the diagnosis is made, except, as you mentioned, to have him qualify for NH. You are the best "test" to determine how he is progressing. Some on this site have suggested keeping a diary so you can follow changes. I have never done that. I am sure others have refused tests after the diagnosis was confirmed. I didn't refuse tests. I fired the neurologist and had all my wife's care done by her PCP. When her doctor did not want to discuss her Alzheimer's, concentrating only on diabetes and hypertension, and wanted another doctor to "manage" the AD, I switched her to a PCP who was willing to take care of everything. Now the only medication she is on is for mild high blood pressure and mild diabetes.
For the record I am speaking (writing) as both an Alzheimer spouse and a (retired) primary care physician (in that order)
When my husband went in for the 2nd neuropsych testing, he left the first day in tears. He agreed to go back the next day (was suppose to be a 3 days of testing). After about an hour he walked out in tears. We went in to talk to the guy doing the test. My husband told him 'no more, I don't need you to tell me I can't remember'. That was 5 years ago. The only testing he has is the MMSE when he has his check up with the neuro. The only reason he still sees the neurologist was his PCP when we live in Vancouver said he would handle all things except those related to the Alzheimer's, so we had to keep the neurologist. The primary he has where we moved to is a PA but he says he has lots of experience with dementia and can treat it including behavior problems. Time will tell but he still has to see the neurologist in Portland which is 5 hours away.
As said, there is no point in doing the lengthy test since it won't change the outcome or diagnosis unless symptoms might suggest otherwise. MMSE the doctor uses as a quick check to see how they are doing. But then we all know from Joan's experience with Sid, they can be really bad but still ace the MMSE.
.....I don't know if this is true for you but I found it difficult to get to talk to my Helen's doctor on the phone. He was always too busy and his staff would tell me to just discuss it with him when we came in for the appointment which I considered cruel for my Helen to have to listen to that. .....So what I always did when we had an appointment, was to type out a little note explaining her condition and everything I wanted to say. And I would always give the note to the receptionist so the doctor could read it before he saw us. By doing this we avoided Helen having to listen to a sad discussion about everything that was wrong with her. This way, there was no need for any testing because my note listed everything she could or could not do..........GeorgieBoy
After the 2nd MMSE for DH, I called the office and told them he was upset because the test made him aware of how much he didn't know or remember. I was told they did not want to do anything to upset him and there would be no more tests. They even suggested that his primary care doctor could probably take care of him now. So that's what we did and it has worked well. I agree with Marsh. Who needs half a dozen doctors when they have AD and are going to get worse no matter what.
DH's PCP who treated him from the beginning would always just ask certain questions, like "where is your son living now", or "did Vickie take you out for breakfast this morning". The last time he saw him 2 months before he died, when the questions started, DH said, "stop asking me questions you know I can't answer!"
I did what GeorgieBoy did. I wrote out the issues that concerned me and the things that had changed since the last visit and passed the paper to the receptionist when we arrived. It made the visit much easier. The only reason I kept the nurologist as long as I did was because of the drugs for his behavior. After we switched to the PCP he still consulted the nuro for the anti-psychotic drug. That way Ron got the drug without having to make another Dr visit.
Years ago, we pursued lots of tests. We started because we needed a diagnosis, and we also needed documentation for social security disability. We also wanted answers about what to expect, but we never got any of those. We both finally realized that we could tell what the problem areas were better than the doctors could--and our own opinions were free, unlike those of the doctors.
One time I witnessed one of the AD specialists give DH a MMSE. The doctor got very loud and aggressive, like he thought if he yelled at DH, then DH would magically remember the answers. You realize you don't want to expose them to that level of stress. These were specialists in the field of dementia, but they didn't seem to have any idea of what the disease was like, either for the patient or for the caregiver. We haven't been back in almost a decade.
For the longest time, the only medical professional who would admit that anything was wrong with DH was his primary care doctor. He had known DH for a long time, so he could see in him the same changes that I was seeing. Most of the specialists kept saying that it was depression or stress at work. DH was 54 when he was finally diagnosed, after a couple of years of repeated visits to "specialists". I guess the doctors just couldn't believe that a person that young could have dementia.
His neuro always makes it more of a game when she does it. I think part of it is hb's personality and it being a woman. He does look forward to seeing her. And she always acts like he does well. Because he has no short term memory he forgets quickly that he could not remember the words. She doesn't hold too much value to him knowing where we live since we traveled around so much.
It has been almost 2 months waiting for the presen1 genetic test. It took about 4 weeks for the presen2,but maybe they are busier. Weird that the blood sample is sent back to a lab in Massachusetts.
I'm echoing comments by Marsh, George, and Mary in PA. Once it was perfectly clear that the primary problem was dementia, and DH was still mentally "with it" enough to tell all that he wanted his final years to be at home without hospitalizations, placements, or much intervention for anything, we just ditched the cardiologist and neurologist and actually found an MD who would do house calls. (Long story--but I was still working as a nursing educator and supervisor--it was a professional courtesy to help keep me on the job.) I had always given the doctors office a written note of how DH was functioning so I did not have to talk about it in front of his face during the appointment, and I continued that through the house call years. When we moved out-of-state, I again had to take DH to appointments, but without the job, I was able to do it. Also, we found a family care doctor at the end of our road who "got it" and said when the time came, she would help with the Hospice referral. And that is exactly what happened. It was hard enough trying to keep DH safe with his dignity and self-esteem intact as it was. I couldn't imagine taking him to appointments that would have cut him down.
Julie, I know what you mean. I took DH to a geriatric psychiatrist and EVERY visit (once a month, what a robber!) she did a verbal MMSE. She would then discuss the score in front of him and comment if she thought he was doing well or had slipped. One time she said "He scored 3 points higher this month than last month. Keep up the good work". Like I had anything to do with the increase. Idiot. Finally I told her not to do the MMSE anymore because it upset him and really didn't serve a purpose any longer.
I too would put in writing my concerns/observations and hand it to the receptionist to give to the doctor to review before he see's your husband.
A couple of things affected my husband regarding neurologists. The differential dx phase seemed to go on forever, partly I think because of his age. His PCP did not feel he could manage his case. Neurologists were just about the first referrals. My husband was very fortunate in the sense that his first neuro was wonderful. After she relocated my husband continued with a clinical neuro in the same office and was later referred to an academic neurologist. They were both wonderful.
Regarding testing, I don't know if it makes any difference if the disease is FTD which is what my husband had, or AD. However, his employer had a private disability insurance plan and they required full evaluations done by neuropsychologists and neuropsychiatrists. Once classified as disabled it was necessary to have SSD concur. They would not accept the previous report even though it was recent. Each of these evaluations had many tests and generated reports of about 12-15 pages.
I don't have the words to describe how exhausted, depressed and despondent my husband was after these tests. What I will say is that I feel my husband was at the state where he knew what he didn't know and it was heartbreaking.
I agree with what others have said above and I'll add one bit of advice about handing a document to the receptionist at Dr. appointments: You need to clearly spell out to the receptionist that the Dr has to read this information BEFORE you are invited into his office and, if possible, he should call you into his office (on some trumped up reason) to discuss before your husband's appointment begins.
We had a neuro who, fortunately for us, is very knowledgeable about AD and is very compassionate toward both the sufferer and the caregiver. Not all Drs. are as knowledgeable or enlightened. I wish you the best.
I found a neuro who is highly regarded by several on this site. My experience was he was a "master of the obvious" Beyond confirming the initial dx, he was of little use beyond confirming that which was obvious to me and my family - my DW was failing......... DUH???? Our primary, a board certified Internist, Geriatric Med and a Hospice MD was totally adequate and responsive. All one can do is respond to each new event or issue with an appropriate med and pray for the best.
Thank you all for your input. The visit went quite well. This time we saw the nurse first, this had never happened before. She asked for my husband to go in alone first so that he could complete a test. I told her to hold on a minute and then asked Paul if he was comfortable doing a test. He said he was, so I told her she could go ahead. They did not tell us the results and I didn't ask. ( didn't see any point) We then saw the Neurologist who asked us questions about Paul's progress. She told me she really bases her decisions on her interview with us. We were asked to come back in a year. She was very honest. I told her that my suspicion was that the reason we come to see her is in case his behavior changes and also to keep up to date on any new treatment or drugs that my come to light in the future. She said I was correct and that unfortunately there does not seem to be much headway being made in the treatment of Alzheimer's. A very sad, but true statement. We will just take one day at a time and at the moment, his Alzheimer's appears to be progressing slowly. I just want to thank you all again for your advice, I really appreciate it.