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Coloresue Asked July 2015

Opinions regarding dementia type, please?

At age 59 my husband abruptly started being oppositional, argumentative, illogical, critical of me, very forgetful, verbally and emotionally abusive of myself and any sons living at home, highly manipulative, having false "memories" of things that never happened...some of me abandoning him, some just strange. He became a Dr. Jekyll/ Mr. Hyde change artist at a moments' notice.
He left our home briefly instead of me when he saw I was serious about leaving, had to come home because he couldn't cope with being away & working. I left for 4 months. This was before I had a diagnosis of dementia. He saw 3 neurologists and had 3 diagnoses: dementia, no dementia, and "oh, this has to be watched" in reference to his brain MRI. I had to set boundaries to protect myself and one of them is he lost his place in the bedroom. He still resents this, doesn't understand it.

After 6 yrs. of this, he calmed down and moved into a far less contentious phase. There's still the distance where I can't completely trust him and he'll sabotage something I've worked and strived for. He still guesses (incorrectly) what I am thinking and feeling without actually asking me. He tends to conclude the worst possible about me. Yet he wants me around all the time, offers to drive me to appointments, comes to Church often just to be with me. If I am such a terrible person as he says, why does he want to be around me so much? He's not logical, but emotionally driven. At least now he's less paranoid than the 1st 6 years. That was rough.

He has poor eyesight and poor hearing. He often won't put his hearing aids in but blames me if he can't hear me. I still have PTSD from the verbal attacks but am much better since I've had this year to lose most of my "startle" reaction.
His memory losses are obvious to those who are close to him, mostly family on both sides. He still drives but now he speeds 8-12 mph over the limit, even in 25 & 30 mph zones, and can drive emotionally, furiously & tailgate. I always carry cab money from the 6 yrs. he was so awful. He balances a checkbook but takes many tries before he's successful. No one who isn't close can believe he has dementia. I'm even wondering what's going on. How can he go from being so bad to functioning much better after 6 yrs.? Both my sister and I separately have wondered if this is vascular dementia.

He handles his own appointments and takes his medicines and BP and sugars and records them. He walks as ordered 2 x day. He grocery shops almost daily and buys more than we can store. He cooks dinners because that's his field of education and he's good at it. But my sons go behind him if he does handiwork because he doesn't remember how to do many things anymore. They have to correct his errors. He'll insist on something that makes no sense (he always has to be right). He told his own family he has dementia but now that's a thing of the past for him. He won't take his meds...stopped them as soon as one neurologist said he didn't have dementia.

Does anyone know what is going on with this man? He's survived pancreatic cancer and 7 years of dementia and still can fool people who think he doesn't have it. Meanwhile my life is turned upside down being his 'caregiver' and working around his crazy logic while preserving his sense of being in charge of the household where I actually see to the management of most things. He sees some trees but I see the forest. I have to handle the bigger, long term picture for our lives because many things don't even enter his head.

What's wrong with this man?

vegaslady Jul 2015
Could be frontotemporal dementia, FTD. Check the UCSF website for neurological problems and the

Coloresue Jul 2015
Thank you both for your answers and questions. Hubby goes out alone and is able to conduct all his affairs on his own. I sometimes go with him but it's not often I'm needed. My own health demands I be at many, many app'ts., often conflicting with his, and sometimes taking my mother, father or son to their app'ts. ( hubby helps with some of our sons') because I must drive them (we don't let G'ma drive anymore and my son isn't allowed to drive after anesthesia), and places many other restrictions on me, that forces me to let him go on his own. He seems to be able to do banking, shopping, etc. on his own and keep the records. I am often unable physically to go with him. I simply can't do everything I'd like to. Amazingly, hubs is still able to handle many things you'd think he shouldn't be able to. He occasionally doesn't ask a question of a Dr. that I'd asked him to. That's about all he misses. I sit down with him and explain any imaging or lab reports he doesn't understand.

His neurologist has long been the one who looked at his brain MRI and said "Oh, this has to be watched". He's an excellent neuro...the best in our area. I am disappointed that he won't repeat a brain MRI on hubs since it's been at least 3 yrs. I just got the name of a specialist neorophychologist who does testing in areas of memory function (for my mother) and am hoping to get my hubs to agree to go also. We only sought 2nd and 3rd opinions at the beginning for diagnoses and have remained the patients of our current neuro since before he was diagnosed .

I agree that frontal & temporal lobe involvement seems to be indicated but would like to get a professional opinion regarding that. Yes, he's diabetic. The pancreatic cancer rendered part of his pancreas dysfunctional and the cancerous portions had to be removed surgically. That made him a diabetic. He monitors his sugars several times a day and watches his diet. He takes a small amount of metformin. This in itself is highly unusual...his Drs. have said they have never seen a patient who underwent the Whipple (Major pancreatic cancer surgery where you are basically replumbed throughout your bottom half of your torso) who isn't insulin dependent. His Drs. are happy with the way he manages his disease and keeps good records. Because he wasn't expected to live this long, I didn't encourage expensive testing to determine what kind of dementia he has. Now that he's been cancer free for almost 2 yrs. it seems we should go forward with learning what kind of dementia he has. How can he be so highly functional after such a horrendous period of dysfunction puzzles me.

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JessieBelle Jul 2015
Amen to what gladimhere wrote. The sudden onset makes me thing there was a vascular or metabolic reason for the dementia. Someone who knows what they are looking for will be able to see what the problem is. The lesions sound like they are in the frontal and temporal lobes of the brain. I am not a doctor, but the behaviors you describe are associated with these areas.

One thing I wondered, since you mentioned blood sugar, is he diabetic? Has he controlled his sugar fairly well or did it tend to fluctuate widely?

gladimhere Jul 2015
Seven years into dementia and still driving? Does he go out alone or is someone always with him? And he still is able to work? How is he doing there? There is somethingdefinitely wrong with him. How long ago was the MRI? There could be many things wrong, you need to stay on top of this. Something is wrong with this picture. It just does not make sense. Choose one neurologist, the one that seems the most concerned and stay with that doc. Changing neurologists until one is found that gives the answers that you want to hear is not helpin your husband, the doctor, or yourself.

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