What should I do with my husband's fluctuating dementia?

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He was, a year ago, going downhill. He couldn't seem to dress himself, couldn't speak understandably, wouldn't bathe. However, in the last year, his MD changed his Xanax to half-dose 3 X day instead of full dose twice a day, and he has stabilized. He needs the Xanax because of his extreme anxiety.
Now he's able to dress himself (mostly - still buttons crookedly), he can walk without a cane or walker. We can also converse and make sense.
Yet he can no longer write, everything electronic doesn't work for him, he even can't figure out how to dial the phone, get a cup of coffee from the Keurig. He has always enjoyed reading emails, Facebook, and news headlines, but can no longer access them. He can put in a DVD and run it. He has short term memory problems leading to arguments over whether I told him or not. He also has this terror that I'm going to leave him. He thinks I've left every time I leave for an hour or two, forgetting I went to get groceries, or to a meeting with friends.
His MD says his problems all come from his meds. While I enjoy the respite from full-time caregiving, I'm wondering if I see things that aren't there, or if this up-tick is only temporary. The MD says of course he's getting older! He (and I ) should expect some changes.
So my question is: Does he have dementia of some form? Or am I so afraid he does that I see it where it is not present? BTW, he's 82.

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Jeanne Gibbs, you have certainly gone the extra mile for me. Thanks for your care!
Dr. Eneboe is retired now. He's in his 80s, possibly even is 90, himself. He no longer sees patients. But it might be worth a phone call to see whom he might recommend.
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Write a letter stating the types of behaviors you are seeing. Get it to the doctor before your husband's appt. That way he can read it and be better informed.
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According to a Google search, Dr. Paul Eneboe, MD is a geriatrician in your town. Do you know anything about him?

Even if you have to go some distance for a workup, diagnosis, and treatment plan, you wouldn't necessarily have to return there very often. It would be ideal if you could see a geriatric doctor locally and possibly get a referral to a dementia specialist. Make a special occasion of the distance visit. Eat at nice places, perhaps stay overnight, turn it into a date.

My husband had a local geriatrician and saw a neurologist 2 hours away. The neurologist sent copies of all reports to the geriatrician and she was very good about observing drug restrictions, interactions, etc. Even though it was only 2 hours we sometimes stayed overnight and did fun things.
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What I MEANT to say was, you all have helped me understand that yes, LBD does fluctuate, and no, the things I observe are not normal for his age. Thank you. It's a yo-yo experience, isn't it!
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Thnk you everyone. My husband's doctor seems more intent on pumping up his self esteem by telling him, or implying, that he's okay, just getting older. My husband usually goes in to the office alone. Last time I went with him, and Hubby started the conversation with "I think I'm getting better." (eye roll from me). MD said that's great!" I don't think hubby has ever told the MD about his angels, afraid he won't believe him. I had to corner the MD a bit later to tell him what's really happening because if I talk to him in Hubby's presence, Hubby gets nasty with me.
I don't know of any geriatric MD with 250 miles (nearest city), and maybe not even there. I can't even find an attorney who understands elder care, etc. in our state.
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I would begin by finding a neurologist who specializes in demensia. Each type of demensia requires different types of care. There are fluctuation in demensia... Each stage comes with different issues.
Thinking a spouse is leaving or cheating is very common. My paternal grandmother would tell people that my dead grandfather wasn't home because he ran off with a younger woman... They were married over 60 years. My mom used to say my step dad was cheating on her... They were married over 40 years and he has prostate cancer.
My mom is in stage 7 Alzheimer's so we have seen it all ;-)....we say, this to shall pass. Good luck to you
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It's always amazing to me when some doctors "haven't heard" of some medical condition! 🙄
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Actually, I may understand where the doctor is coming from. It may be ignorance, plain and simple.

I once took my husband to an ER. I explained to the doctor that he had Lewy Body Dementia, and therefore should not be given certain drugs. I provided the list. He said, "Hmm ... Lewy Body, Lewy Body, I think I might have heard of that." So I whipped out the other basic LBD literature I always carry to medical appointments. He seemed genuinely interested and appreciative.

ER doctors, GPs, Family Practice doctors, and Internists may simply not be aware of any dementia but Alzheimer's, and only have vague awareness of that. So if you really want more information about what is going on with your husband, he may need to see a specialist.
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Is the doctor that your husband is seeing someone who specializes in dementias of various sorts? I think it would be a good thing if you sought out a neurologist, internist or psychiatrist who specializes in dementia.

Be aware that getting a diagnosis from a highly trained specialist, who may be a distance from where you live, doesn't mean that you have to continue to travel to see her/him for continuing care.

My dad had a particular kind of leukemia that was being studied at Sloan Kettering, in NYC. My parents lived in Westchester, a difficult hour away into NYC traffic. After initial diagnosis was made, Dad was treated by local physicians, with occasions telephone consults with the folks in NYC.

Getting a definitive diagnosis by experts can be a real blessing!
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All dementia types have some fluctuations. The type that is particularly known for fluctuations -- in fact, it is a core diagnostic feature -- is Lewy Body Dementia. My husband had that.

Many types of dementia (and other disorders) include hallucinations. In LBD they occur very early in the disease, whereas they come later in other kinds of dementia. Often in LBD the hallucinations are benign or comforting. For example, if they see children they are ususally nice visitors, and not vandals or threatening. Does his doctor think the hallucinations are a result of medications?

LBD is often accompanied by a sleep disorder (RBD) that includes a particular pattern of vivid dreams and of acting out those dreams. For example, the dreams often involve running from bad guys or animals, and the feet will move as if running, and the arms may flail about fighting the bad guys. (If you don't sleep in the same bed, you may not be aware of these actions -- and lucky you!)

The sense of smell does weaken with age, but it often goes away completely in Alzheimer's and Lewy Body Dementia (but not necessarily in other kinds of dementia.)

I really don't understand where this doctor is coming from!
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