Usually, after we return from our neurology appointments, I write a blog about it. Not this time. The blog would be as big a waste of time as the appt. was.
Everything followed its usual path. We woke up this morning and he asked me why I had set the alarm. Where were we going? Never mind that we had discussed it all day yesterday. We get to the office - he scores a 28 on the mini mental, and the doctor's assessment is - No change. Stable Mini Mental for 3 years. Not eligible for any trials due to diabetes and previous brain bleeds.
Once again, the doctor acknowledges that the mini mental does not measure all of the declines that I see at home, but Sid is on all the available AD medication. Nothing else to be done.
We leave the office; I ask Sid if he remembers what the doctor said. He says - " I am stable. I'm not declining, so why can't I drive?"
That's why I fired our neurologist - I couldn't see that he was doing anything useful, and he didn't seem interested in her problems. Her PCP is going a good job in all aspects - stopping useless meds (Namenda last month, probably Exelon next month), contacting Hospice (she's not ready yet), being sure I am under adequate care, etc.
Joan, I'm also using the pcp, for dh's seroquel. After two tries, a year apart, on getting him dx with the neurologist, both times very frustrating, I am using the pcp. She knows ALL about him, ie, all about his abuse all of these years and the whole situation. I feel she's the best one to help me take him through the rest of his life.
Frustrating indeed. We have an appointment 12/21 w/hb's neurologist. I spoke w/the nurse today and said hb says he doesn't feel/see any change and wants to stop everything. Call back: Neurologist wants him to continue; will talk w/him at the appointment. I'm making a list of his behaviors to discuss w/her. Don't want to seem heartless, but if he wants to stop....okay by me. I'm the one who has to fret and give him meds. May prolong something until I'm too old and frail to care for him.
And THAT is why my husband doesn't see the neurologist anymore. His family doctor knows about dementia meds and he is controlling the ones my husband is on just fine. Once my husband was on both meds there really wasn't anything the neurologist could do for him.
I think these neurologists are missing the boat. Standard care for AD should extend to the caregiver. This disease has at least two "victims" in eadh case--even if they can't do much for the patient, there should be a standard practice of supporting/teaching the caregiver throughout the disease process. We see my husband's neuro more often than I see any of my own doctors--he should have a vested interest in how I'm doing, since if I fail, there goes everything. But I realize this level of care certainly doesn't exist in the real world.
My last visit to a neurologist ended in him wanting to perform surgery on my dw, stating that by fusing the t3 and t4 vertebrae in her neck would increase blood flow to her brain and cure her alz......a second opinion followed, and that neurologist could not understand why such a procedure would even be considered. I am now seeking a neurologist surgeon that can inject jello (preferably cherry flavor) in her pareietotemporal lobes and frontal lobes in an effort not only to cure alz, but to make her sweeter...
My experience with the neurologist is the same as Joan's. It really seems like a waste of time so now DH goes once a year. After reading all of your posts, I may try our PCP. However, our PCP's change fairly frequently (every 2 years or so) so there may be a risk of getting one that is clueless. Just another decision to put in the decision pile.
I quit taking Jean to the neurologist a couple of years ago. The only reason we went to begin with was because the V.A. wouldn't o.k. the aricept and namenda with out that Dr's rx. We've had the same PCP for 15 years so he knows Jean pretty darn well. I quit the neurologist when it didn't seem like he was doing a darn thing for Jean so why bother?
well i like our neuro as well. he has specifically made points at each visit to ask about how i am doing /respite time/family!!??? not!support)? so overall if i had to chose one dr to supersee DH thru his journey it will be him. its my opinion to have a dr onboard that could deal with any brain issues/stroke/tias etc if the issues should arise at some point. plus at our last visit we went over end of life issues and hospice etc and we agree on main points so it makes for a good relationship. i want him to remain with us thru hospice if possible. i think it wise to remember there is only so much even great neurologists can do once AD has its grips. one the other hand our pcp is new as our old one left so if i have a choice it will be the neuro. divvi
Well, we're a little different (see that, Joan? I used "we"). DH neuro for many years was a clueless jerk. THOUGHT I had found a great PCP and was going to move all care to him, UNTIL said PCP sold me down the river on the driving issue -- we won't be seeing that dr. again. So, back to square one. Luckily I heard of a neuro specializing in dementia so got DH in to see him. Only been to see them twice but I am pleased. They actually read the note I snuck in to them prior to appt. The dr saw DH and the Nurse Prac saw me and then after they conferred the dr saw us both together. We left with a rx for Zyprexa which may be helping a little. After second appt we left with Namenda added. That was just a week or so ago so too soon to tell if it's doing anything. We will keep with this neuro for awhile to see if the meds help with the agitation and rages. Once I feel comfortable that his meds are correct I plan to look for another PCP and stop with the neuro. I basically think a neuro is only useful for confirming a diagnosis.
I do love our neurologist, and I say "our" because he makes it a point to let me know that he feels strongly that I am his patient too. He has always felt it was his job to not only diagnose and treat Sid, but to help me understand and accept AD. He has patiently and kindly taught me much about how to handle the disease.
He does understand, despite the paper trail left by the misleading mini mental, that Sid's decline is real. But the situation now is such that there is nothing more he can do for us. No new medications and no trials for which Sid is eligible, so it's really just a waiting game. He was glad that I am busy and active with my website and writing, and strongly advises, as did Sid's primary doctor, that Sid also stay as busy and active as possible.
Exactly divvi. DH's neuero ALWAYS takes time with me to see how I'm doing. He found me a support group in my community (which is not his community) and while he always gives the mini mental, he also ALWAYS tells us that the results are subjective, meaning there are many variables that can factor in to the result of the mini mental. He also admits, on every visit, that once an Alzheimer's dx is made, there's not a lot he can do. I shared this before, but I'll share it again. Once DH was diagnosed, he told me my job was to now keep him safe and happy....period! On our last visit, he told me that Alzheimer's is a terminal illness, and I need to prepare, how ever a good day DH might be having. And I agree. xoxo~D
OUR neurologists (and I say that because they care about both of us, and are especially concerned about me) are really terrific. We see two of them each time we go and one of them tests my DH while the other talks to me privately about how I'm doing. I write down my questions; they can see how many I have and take the time to listen. Of course, my husband gets very angry when I tell the doctors what's been happening since we last saw them. They care very much how I 'm managing and urge me to get more help so I can have respite. I keep saying I will, but I still haven't gotten any. Things seem to be so much better since we took him off the Aricept and put him on Seroquel. It's like a miracle! He's so much calmer I feel I can manage all right by myself for awhile. I know it won't last, but I'll take it.
I must say the disadvantage to the VA is that only my hb has medical care through them. I have not yet been asked about how I am doing - the appointments are all about him. In time, whether this changes as he progresses I don't know.
Foster was due his Annual Clinical Psychological's testing and subsequent 3 hour meeting with his Neurologist in September. I knew they would not be able to help him..and were only gathering research material at this state. He never participated in a trial, or other testinig from Day one..back in 2004. He had a PCP, who more or less observed, and never added or took away any of his AD meds, but managed his other medications he took (translated: just keep the same prescriptions active he had been taking for years). When Hospice came on board in October, their doctor reviewed all the meds he took and suggesting stopping most of them...questioning why = in fact = he took most of them, since the current doctor hadn't checked to see if he actually needed them. Some he had taken for 20 years, same dosage, etc.
We were so happy with the Hospice doctor, .. he was so nice. Came to the house several times and seemed genuinely concerned about Foster, the person...rather than Foster, the disease.
I like our neuro very much, but also really like our PCP. Both are thoughtful and helpful and respect one another. My PCP will prescribe an anti-anxiety med (I asked him for something to calm L. down in an emergency like we had a week or so ago) and he gave me some Ativan.. but when I mentioned that I had - but am not using - some Seroquel, he said I'd have to get the neuro to prescribe that, that he didn't want to touch it! Interesting.
This is an ongoing discussion but the interim conclusion would seem to be that there is a vast difference in neurologists and that some coninue to be helpful after dx and others are just interested in their statistics and research. To be honest I should have mentioned that our neuro has sent me through twice to the "care consultant" who has taken time for me and given some very good advice. I will certainly continue to have at least phone contact with her.
My husband sees his neuro every six months. He does the usual neurological testing of his balance, mmse, and asks me about any problems I have noticed that he might be able to help with. He is a great believer in quality of life and doesn't believe in taking meds just for the sake of taking them. He has told me that I could stop my husband's cholesterol meds and doesn't even bother with trying to get my husband to stop smoking anymore. My husband also sees his psychicatrist twice a year just to monitor his antidepressants--sometimes I think these visits are more for me than him as the doctor talks to me most of the time and asks how I'm doing. The psychiatrist has been my husband's doctor for over 10 years and knows him well.
My husband's PCP is not comfortable dealing with his FTD. She likes to be kept up to date but prefers that the neurologist and psychiatrist take care of his meds.
I fired Claude's neuro about 18 months before he passed away. Every appt was the same....."how's he doing? need to renew any scripts? see you in three months. ... That will be $250 please...etc, etc"
DH's neuro left the area. We tried one other, it was not a good fit, so DH asked our PCP if he could handle everything and he said yes, so that's what we are doing now.
Just got back from DH's neurology appt. Guess what? His neuro didn't give the stupid MME today! I asked him why, and he said that he was looking back through DH's history, and the results are all over the place...some 15, then the next a 24, etc. He's decided that they aren't telling him anything. Yay! He's also recommended a hearing aid because the alz brain isn't able to compensate for hearing loss any longer. He told me he's concerned about the stress of living with not only alz, but the aortic aneurysm is having on me! He advised me to take care of myself, DH is going to need me. Ans yes, this is a VA doctor!
I liked Bill's neurologist. We only saw him every six months and he always took the time to actually talk to Bill, even though Bill had no idea how to answer him. After talking to Bill he would tell Bill that he had to talk to me also to see how I was feeling. He made sure that I knew that I could call him 24/7. I only had to call once but he was there and ready to answer my questions. Our PCP was like God. Always there, even gave me his personal cell phone number because he didn't want me to have to deal with trying to get through to him. He made several house visits to check on Bill. After Bill died I called him and told him about Bill and that I would like his death certificate to list AD as cause of death. He told me he was in Jordan at that time but he would call the doctor filling in and tell him. The next day I got a call from his nurse and she said that the doctor had called and told her to call me and see if I needed anything. Now that is a special doctor. One you don't find too often. He has been our doctor since '73 and I wouldn't trade him for anyone.
I'm with you folks, I see no need to visit the Neuro since there is nothing he can do to help.
The problem here is, lately, my DW family has been noticing her decline and still think "the doctor" can help. They have taken almost NO interest in learning about the course of AD. How do you explain it to them when they don't understand the nature of the disease? Forget having them understand what I go through day after day. I gave up on them asking for help almost 6 months ago...
Instead of a neurologist, I am hiring a clown the next time.....he might get the diagnosis correct, and it will be cheaper and at least I will laugh.....
Guitar Guy-- You can't explain anything to them. Their minds are closed. They know what they know and that's what they believe and will try to push on you. I found that I couldn't cater to their "not really" wanting to know, and at the same time push their views regarding my DH's care. I had to reduce that connection and effort. My job is to do my best to care for DH. If they want information, I'll try to connect them, but I am putting no more effort into explaining, and justifying myself and how he is.
Our PCP prefers we see a Neuro-psych Dr. He takes care of any other ills. Both Drs. communicate with each other and consider me the best tool in their toolbox for taking care of DH. I like that.