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DrRussMd, Board Certified MD
Category: Neurology
Satisfied Customers: 64376
Experience:  Internal medicine doctor, diagnose and treat neurology patients, many years
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My husband is 54 years old. Hes a retired AF major. He has

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My husband is 54 years old. He's a retired AF major. He has at least 3 degrees, an MBA, a BA and a BS. He had impeccable credit. He also was very neat and organized all his life.
Over the past 5 years (we've been married 20 years in June) myself, my daughter, and his dad noticed him slipping cognitively. He got a civilian job at an AF base when he retired because he looked excellent on paper. When he took the job, he couldn't do it. Instead of asking his supervisor what he was supposed to do, he'd call his dad. When his contract ran out, obviously they didn't renew it. He had other jobs in the interim, but after a short while, his incompetence was obvious. He just didn't understand what his supervisor would tell him to do.
This past August, it was like the ball rolled off the table. He would shave only half of his face, including half his moustache. He would only mow half the yard. Not part of the yard, but half of the whole yard. I asked him to see his doctor but he wouldn't go because he didn't think anything was wrong with him. He also began stuttering very severely.
I found out in early December that he hadn't paid any bills since July. It's not that we didn't have the money. He would take the mail and put it in an igloo ice cooler and just not pay the bills. He not only wouldn't pay the bills, but I found a $2400 tax refund we were owed since we overpaid our income taxes in 2009. When bill collectors would call and talk to him, he thought they were charity organizations asking for money and he would tell them to call back this time next year. Anyway, I went to his doctor and told him what was going on, and of course his doctor wanted to see him. Since Steve didn't think anything was wrong with himself, he still wouldn't go to the doctor and I couldn't make him go because of his adult status.
In January, he had a single vehicle accident. He wasn't trying to hurt himself, but he drove his car into a ditch like he was making a right turn on a street. That finally gave me reason to have him hospitalized on a 72 hour hold.
He was put on a mental health ward and they did an MRI among other tests. They diagnosed him with profound dementia with psychotic features. They said the psychosis would be off and on because of the area where the brain was damaged. In the hospital, he wouldn't eat and he wouldn't shower and he was often incontinent. They would talk to him about his bills, and he would talk to them about taking the dog for a walk. (He's still very much like that. His answers in conversation often don't make much sense.) His driving privileges are revoked. He was released from the hospital in March. I was granted guardianship over his medical/financial decisions. (I've gotten all the bills up to date).
He's now in the VA system. He has a psychiatrist and today he went to a neurologist. The hospital didn't forward his MRI to the neurologist but he did some tests and doubts seriously that Steve has dementia. He did order another MRI (which hasn't been done yet) some blood work (which was done today but we don't have the results yet) and gave him a referral to a psychiatric neurologist. He'll see him again in 90 days. The psychiatrist he saw 2 weeks ago does think he has dementia (which is why he referred him to a neurologist)
My own conclusion is that he has both neurological and psychiatric issues. But that's not really the issue.
My practical problems right now are first, that he STILL won't eat. He usually eats an apple a day. He'll suck on a lollypop now and again. He's has eaten 4 lbs. of sugar in the past 6 days. He never was one to eat junk food or even desserts. Now he eats sugar by the spoonful. He even keeps a spoon in his shirt pocket for when he finds the sugar to eat a spoonful or two. He is 6' tall and his normal weight is about 160 lbs. He was weighed last week by his primary care doctor and he only weighs 123.5 lbs. The neurologist today also told him he HAS to eat. He's weak all over by neurological exam but both myself and the neurologist think it has more to do with not eating than anything else. I know for a fact that he's only eaten 3 whole meals in the last two weeks. The rest of his nutrition has been spoonful of sugar and maybe an apple or an orange. He drinks a lot of soda. My question here is: How do I get him to eat? He just doesn't seem to be hungry.
He is on risperidol and Zoloft. He had a Rx for something to help with the dementia but the neurologist said he shouldn't take it because he doesn't believe he has dementia. Personally, I think it did help his memory. I do have to keep his meds away from him because he will take them all day long. I also had to take away vitamins and all other medicines and lock them up because he would take them. He even took our dog's heartworm medicine once.
The other question is: What do I do to get an accurate diagnosis?
Hello from JA
So this is interesting.
What was the final diagnosis.
What type of dementia?
Customer: replied 4 years ago.
He was diagnosed with profound dementia of unknown cause. By the MRI, the most damage is in the language area and the behavior area is also affected. The doctor said he will have intermittent psychosis because of areas affected. He stutters a lot and his speech will also "loop" as in he will repeat the same sentence over and over.
He saw a neurologist yesterday who said he doesn't think he has dementia but in listening to how he asked the questions and graded the answers, I think his test was biased. He didn't get to see the original MRI because only the report was sent from the medical records section of the hospital. He is still seeing a psychiatrist and the neurologist also made him a psychiatric/neurological testing appointment.
The testing is the next step.
This will give an objective measure.

This sounds like frontal temporal dementia to mee, which starts more with psychiatric symptoms and then progresses. It is often misdiagnosed.

What further questions do you have at this point?
Customer: replied 4 years ago.
My concerns now are with this neurologist. He took him off the dementia medication. The psychiatrist he's also seeing wants him on the dementia medication.
His reflexes are all normal but he's very weak from not eating. He actually was admitted to the hospital last night because he fell again and has lost more weight. He falls because he gets dizzy. He gets dizzy because he hasn't eaten. He is in the hospital for nutrition.
My concern is getting him the proper medical care. When he fell again I called his primary care doctor. He told me to take him to the VA ER and have him admitted for nutrition. The ER did blood work and he's very anemic. Makes sense because he hasn't eaten properly for months. The ER doctor was initially going to send him home and schedule him for a colonoscopy to see if he had internal bleeding because of the anemia.
I told him again that his primary care doctor wants him admitted for nutrition. He didn't get hurt at all in either of his 3 falls. When one only eats sugar and apples for a number of months, of course that one will be anemic because there isn't any iron in granulated sugar.
Can you see my frustration with getting him the care he needs?
Can you also tell me what a neurologist can or should do for him?
The psychiatric care seems to help more because they talk to him more about eating.
Also, when he was at the ER, they did a CAT scan which I thought was not necessary because after falling 3 times, they thought he may have had a stroke. It's like the doctor totally disregarded the fact he wasn't eating and has lost more than 30 lbs.
There is no real cure or effective treatment for dementia.
There is home care, assisted sounds like you need more help in this situation as well.

You won't be able to do this effectively until testing and diagnosis is that will direct the level of care needed, medications needed, that is why it is really frustrating as you are in limbo at the moment until testing is complete.

At that point, I would try to arrange for as maximal car as possible, and anti-dementia medications if indicated.

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