My DH went to the neurologist yesterday – praise God for answered prayer! He initially lied to me about where he had been, but later decided to tell me he “did your doctor thing.” Even more amazing is that he called for the appointment Friday and was seen yesterday – I can only assume they had a cancellation. I think he was motivated by this event: He blamed our 15 year-old son for taking $40 – it turned out the problem was DH consistently thinking that 5 twenty dollar bills and one ten dollar bill = $150. My heart broke when I heard my son on the phone with his dad asking, “Dad...do you know how much 5 twenties and 1 ten is?
The neurologist is sending him for a 2 hour test, and a few blood tests (most of the other blood tests had already come back normal at the family physician a few weeks ago).
I need your advice.
Should I call the neurologist and let her know my husband has told me of his visit, and I am available to meet if she needs me to? When DH met with her, she was surprised I was not there, and DH told her he chose not to tell me he was coming.
DH gave her my list of symptoms / observations (the one I had given our family physician). It is a fairly comprehensive summary, missing only the more recent paranoid tendencies of my DH. Of course with the list, he would have given her his explanations that I was crazy and all of this is easily explainable. I assume she’s used to hearing that. DH said he also told her about the incident above with the $150 (although I am sure he rewrote history to make it all seem perfectly normal).
Downside to calling: DH finds out, gets angry, and shuts me out further.
Upside to calling: If neurologist meets with me, I can give specific anecdotes which are far more compelling than a “list” of symptoms. More importantly, I can ask her to try and convince my husband that I am not the enemy, and that it would be best if he did this with me by his side. (My DH and I have been together 28 years, and have been best friends all of that time. His reluctance to tell me about the appointment and his choosing to “go it alone” is just another sadness….). Lastly, she should probably know that my husband is going to be practicing neuro-psych tests online. (I downloaded some tests, and asked DH to take them when he refused to make the appointment. Several times I caught him practicing similar tests on his own computer. He never would take mine, so I am assuming maybe his practice did not go so well. That may have been another factor in his finally calling the neurologist).
I would send her an e-mail asking if she would like your input. No more than that. Your husband is obviously not so far along that he can go (read drive) places without you, and at least (at this point) he is being up front with you. There is really nothing the doctors can do except to test them and write prescriptions. It doesn't matter what stage the doctor tells you he is in, you can read all about it on Joan's web page - the stages are there, the caregiver tips are there for how to deal with each problem. As long as he gets and takes his medicines as the disease progresses, basically, you are on your own. The tests are expensive and really don't prove anything or help him in any way. I could have saved a lot. After a year of going every three months, I figured it out. I dealt with the neurologist by e-mail after that and she called in his prescriptions for me. She understood too.. there is nothing they can do.
Dealing with each problem that arises (and accusations of theft are common) are what we have to deal with and you don't need a doctor for that.
I did take my husband for his annual physicals to his PCP.
I hope this helps you.....we all wanted the neurologists to tell us wonderful things were available and what to do, but they can't. It is dealing with AD and you have more experts at this site to help you through what comes up.
I agree, I think he does not want you to know because he does not want to upset you. He is concerned about his health, but at this point it could be anything one of which is AD. Ithink he is wanting to save you the pain of dealing with this till he knows more. I think you need to let him know that you will support him what ever the issue maybe. You need to give him some space to deal with this on his own and he needs to know that you are there for him what ever he finds out.
My opinion he is very aware and embarrassed by his shortcomings. He needs to be in control as Moorsb said. I am sure the neurologist has seen this before. Encourage the test taking as this will help to get a diagnosis and on the correct medication. While there is no cure...early medical intervention will help to slow down the progression.
If possible, see if you can get your husband to sign a medical release so that you can get medical information from his doctor. If not, the doctor probably won't talk to you at all, and you will never be able to ask them what any of the tests revealed. In fact, until I got all the medical releases signed, most of DH's doctors wouldn't even confirm that they had seen him—and I'm the one who made the appointments!
Again your situation has many similarities to mine -
The neurologist will not talk to you due to HIPAA privacy laws. My suggestion is you fax or e-mail over the office a list of other concerns or issues that you want the doctor to know about. I would include on that that you are very concerned that he went to this appointment and may go to follow on appointments without you. The neurologist usually wants another person there so ask the neurologist to contact your DH and request he brings "someone" to the follow on appointment. Mine is complient with others and will do what she tells him to do, hopefully yours is the same.
One of the major issues with us was my DH was starting to have trouble processing verbal information. He was not understanding/taking in/remembering what the neurologist was telling him. At one appointment she told us three possible things that could be causing his vascular lesions. One week later, he could not name any of them or even that she mentioned three things. You need to be there to be the ears (and brain!) and get the correct information.
Secondly, their version of events and the truth is often not accurate. My DH is very bright and his memory was always one of his strongest characteristics. When reviewing the results of the neuropsych testing the psychologist said to my DH, "your memory is low with respect to how high you scored on most of the other testing, but maybe you always had a bad memory". My DH responded, "yes, that is correct".
Do not be surprised if you struggle for diagnosis. They seem to have the ability to turn it on and perform better when they have to. I am hoping for you that the neuropsych testing demonstrates the deficits you see.
On the positive side, he must see something in himself if he made the appointment. That is a step in the right direction. Mine still denies completely 2 years past his first doctor visit as his judgement and other symptoms slowly continue to decline.
My hb had the first neuropsych testing in Feb 08. Before we accepted a workamper job I had to know what was going on. In late March I asked if he had spoken with the doctor about the results. He said he had and everything was normal. In August he was at the doctor in NV where the doctor gave him a copy of the the report. The report stated depression and recommended the dementia clinic.
My conclusion: he has never been in denial so either he never called the doctor or forgot what was said. I am leaning toward he thought he called but never did.
I have decided I should contact the neurologist for several reasons. Most importantly, as Catherine pointed out, I am afraid my DH will not remember / process what he is told. When he told me about his neurologist visit, he said the doctor does not think he has Alzheimer’s or dementia, but may have “mild…mild…mild something or other.” I asked, “Could that have been mild cognitive impairment?” He replied, “Yes, maybe…”
DH discussed his neurologist visit a little more last night. He was upset that when he gave the doctor my list of observations / concerns, she did not want to hear his explanations (I think I like her already).
I think it is important the she know that my husband has bought me into the loop (his decision not to tell me about the visit crumbled a few hours after the visit), and that I am available for a spousal interview if it would help. And since I do have concerns about driving (he has zoned out while driving, and walked away from the car, leaving it runnning), I would like to make sure she sees what I see.
Catherine, if you do not mind my asking, I am curious how you received a diagnosis for you husband. Was it just the low memory score on the neuropsych testing? Did he have any imaging tests? Thank you again for your calm, considered counsel. That is how I usually am too, believe it or not, but the circumstances with my DH have sadly transformed me into a nervous wreck.
I am so relieved that DH has taken this first step. He's already gone for the few additional blood tests, and now just needs to make the appointment for the 2 hour neuropsych test - which he is dreading :( His follow up with the neurologist is July 20, which seems a long way off, but at least we are finally on the right course!
I could not get my DH to the dr but his sister did. He went to the PCP with a list of issues I had written much like yours and explained them all away. Fortunately the PCP read my list and ordered an MRI.
The MRI revealed numerous lesions in the subcortical and deep white matter of his brain. The PCP explained these lesions most often impact the frontal lobe brain circuitry and sent him to the neurologist. The neurologist ordered 5 hours of neuropsych testing.
My fear for you is what I am living. We are 2 years past those appointments and don't have a definite diagnosis. My DH was/is very bright and did relatively well on most of the neuropsych testing. The psychologist explained that there are many people with worse scores that you living and functioning in the world.
Ultimately, I think we will get a diagnosis of subcortical vascular dementia when he worsens to the point that they will label him with dementia. In addition to the memory problems, he failed the part of the test on pyschomotor skills and demonstrated psychmotor slowness (the mind knows what to do but there is a delay in telling the body to carry out the action). This is one of the strongest characteristics of SIVD.
I am surprised we don't have a diagnosis. The neurologist has seen him twist in the illogical stories and even saw one of his rages but the data doesn't support dementia yet. Meanwhile his logic, reasoning, judgement, memory and ability to follow verbal conversations continues to decline. I do not know what is going to push him over the edge to diagnosis, car accident (would you ride in a car with a person with psychomotor slowness - I won't), job loss or a rage that lands him in jail but it is coming.
The process of pushing for diagnosis beats you up and I have had to step back from it for my own sanity. They (the drs and your own DH) can make you look like the bad guy and the one with the issues. My hope for you is that your husband does poorly enough of some of the testing to get the diagnosis that you KNOW is true and that he believes them if he gets one.
Catherine, our neurologist ordered a PET scan and a CT scan and the diagnosis came back as Alzheimer's. I'm surprised your neurologist hasn't ordered those on your husband. My husband took the short test and aced it, but the scans showed that while he might be extra smart, he had certain areas in his brain that were closing down. I did the same thing you did in the beginning. It took me a year to get the MRI and PET scan...
My hb has not had the PET scan - VA won't pay for it cause they think they have all the info they need. The MRI and CT showed frontalobe shrinkage and based on the neuropsych testing and family history gave the diagnosis.
My husband has had two diagnoses, the first one Lewy body dementia with Parkinson's, the second one FTD. He received the second one because of his manner with the neurologist. He was very confrontational and argued with her the whole visit, even getting "in her face." He has failed the psychometric test and the usual testing the PCP gave. Now, though, he passed the short test at the last neuro visit! He had been taking Aricept and Namenda, but because of agitation he was taken off the Aricept. He is now on Namenda and Seroquel and is much better (most of the time). He could not have an MRI because he has a pacemaker, but he did have a CT scan. I don't think we'll bother at all with the PET scan. What good would it do? But, I do think a neurologist should be seen periodically for assurance, to help in staging (although I think that's rather difficult to do, since one day he is in a good mood and another day he isn't), and for medicine adjustment.
My husband had a CAT scan, no MRI because of a pacemaker and no PET scan. There was no need for any of that. He had had an event and the CAT scan showed the damage. And, he had 6 months of speech and cognitive therapy at a stroke rehab center. At 2 hours a week, he could not hold up the pretense that there was nothing wrong.
We stayed with the neurologist until he was on both dementia meds. The neurologist never even suggested medication for emotion or violence although I called the police while we were still his patient. We turned to his family doctor who turned out to be VERY experienced with dementia patients, and who sent us to the stroke rehab center in the first place.
All of us got to diagnoses in different ways. And frankly once you've gotten past the neurologist's "little list" of fake dementias that can be cured and you know you are not dealing with a dementia where the medications can backfire it is OK if you aren't sure if it is Alzheimer's, Vascular Dementia or a cardiac version of Vascular Dementia, or both at once (which is extremely common).
My hb PCP wants the neurologist to deal with the dementia and he will deal with everything else. Right now we see the neurologist every 6 months. It will be interesting to see what she has to say, if anything, about taking him off the Namenda. Will find out in a month.
This is a little off topic but Catherine mentioned "The neurologist will not talk to you due to HIPAA privacy laws."
I would suggest that everybody, if you have not already done so, get to an attorney specializing in elder care law to have all needed documents prepared. This should include a HIPPA release which will authorize medical providers to discuss your spouse's care with you.
Good luck Mary22033. You will find much help here and the most wonderful, supportive group of people on earth.
It is interesting that the VA has never once questioned me being there. My sister had the same experience with her husband as does my son when his wife goes with him. I asked the neurologist if I needed to sign any paperwork to be there and she said 'no, they like the spouse to be there'. I guess since hb was present and has always told them to 'tell her, she remembers it all' that could be why. After my sister had her stroke, I was there when the doctor came in. I even went down to the nurses station to look for him to ask a question. Never was anything said. So I guess it is the circumstances. I could see if your spouse was objecting to you being there a signed paper would be necessary. I do have the DPOA which includes medical care.
If they see you in the office during HIS visits, that means he has accepted that you can know what is going on. Which means they can talk to you because he gave permission even if it wasn't official and verbal.
At hospitals if they see you in the room, and he is awake, that means it is OK for you to know what is going on.
But, if he can't give permission for things to be done, they might just need to ask for proof that you are the patient advocate.
Well, all my DH's blood work has come back normal. It's odd, normally that would be good news, but in this case I was hoping for a problem - vitamin deficiency or something...
I called the neurologist and left my cell number and message that I am available anytime, if she wants to talk to me. Have not heard from her. Oh well. I will be sure to convince DH that I should accompany him on the follow up in July. That should be easy to convince him, since he couldn't remember what was said on his first visit. I'll just remind him that I am much more detail oriented, so it would be better for me to come along and write everything down for him.
Next hurdle, getting him to make appointment for 2 hour neuropsych test...