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.
We are, all of us, getting older!
Drugs do have side effects.
If an adjustment to a medication improved functioning, hooray! Celebrate it.
Do you mean that the doctor now says hubby has no dementia at all, and all the previous symptoms were related to the Xanax? I haven't heard or read that memory loss is a side effect of Xanax. And, all other things being equal, a healthy 82-yo should not forget how to dial a phone, which he has done for 70+ years. Maybe not be so good at remembering phone numbers, OK, that is age, but the other things you describe sound like much more than age-related.
You really know much more about your husband's symptoms than his doctor does. Is Doc a geriatrician or a neurologist or psychiatrist? If not, you might want to seek the opinion of one of these specialists.
In any case, believe what you observe. Treat your husband accordingly, whether you have an official diagnosis of dementia or not.
For example, you know he is going to forget where you went and get anxious. Try using a white board to write "I'm having lunch with Sally. Will return by 2:15. Love you!" That acknowledges his symptoms without worrying what the diagnosis is. (It may not work, but is worth a try.)
BTW, has your husband had hallucinations? Sleep disturbances?
Yes, he has had hallucinations -- sees his angels watching over him. This comforts him. Some time ago (2 years or so) he had worse hallucinations. He said there were strangers in the house, and animals all over the place. I asked if he still saw his angels, and he said yes. Most of the time he said they were relaxed and talking among themselves, but the other day he said they were hovering over him to protect him. I don't mind him seeing angels (who knows, he may really see them!), because it comforts him more than I can.
Sleep disturbances not so much. Just strange dreams that he can remember vividly, usually bad dreams.
I like the idea of the white board. I think I'll try that.
He also doesn't bathe even once a week. Sometimes, if I don't notice, he'll wear the same clothes day and night for several days until I tell him he smells bad. He can't smell anything anymore.
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!
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!
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.
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
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.
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.
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.