My husband is 71 and started declining cognitively January of 2020. He had a horrible situation with his son, had a nervous breakdown and never snapped back. He had very bad short term memory loss initially but it definitely improved. He isn't motivated to do much, and he used to be active. He also sleeps more. He won't eat unless I make his food. He won't take his medication unless I give it to him. He won't drive. He's been diagnosed with mild cognitive impairment but the neurologist said that it could be Lewey body disease. I'm very confused and wish I had a definitive diagnosis so I knew what direction to take. 😞

If he had the full exam from a neurologist, and you were given the diagnosis of "mild cognitive impairment" then you do indeed have a diagnosis. Were you able to discuss this diagnosis with the neurologist? Were followup testing exams suggested or arranged, as this is a progressive disease.
Many dementias cannot be DEFINITELY known until person is dead and an autopsy on the brain is done. Some can be, with MRI and evidence of stroke activity, but many cannot, and the diagnosis is made by testing and by the symptoms. My own brother had a diagnosis of "probably early Lewy's Dementia." He died before any followup, and prior to death he improved after entering Assisted Living and appointing me as his POA and Trustee. He felt it was due to having no problems, concerns to address. But my brother did have specific symptoms of Lewy's. Some swallow deficit which would come and go, some hallucinations often brought on by patterned objects (marble, hotel carpeting). He had hallucinations in which he would see specific things such as "an immigrant woman huddled in the corner of my room, protecting her baby", or a garden party by a pool outside his window (there was no pool) and description of many attendees. He could sit and discuss with me what his brain and eyes made of say the wheel and wheel well of a truck a distance away ("a man who looks like a Diego Rivera painting of a peasant kneeling by Cala Lillies"). He was fascinating as I could see how his brain made this picture.
Lewy's is unusual in that the progression is not "downhill consistently by stairsteps, and levels reached lasting a while before next step down" or "downhill consistently" but kind of uphill, downhill and all over the place.
There are sites on Facebook that are communities of patients with Lewy's and their families; if you do Facebook I highly recommend them.
I would ask for a followup exam and more definitive written diagnosis. Whatever you are looking at here, do know the progression in downhill and you need NOW to put in place all the legal actions you are able so that you can adapt as you go. See your husbands GP and ask for followup exam and I do wish you good luck. And do know that your insistence on exercise will not help him. Or change the progression. The thing that will help is an understanding partnership with as little argument as possible. My brother KNEW his diagnosis. He knew the progression and was interested in making things as good as we were able going forward. He said while he sure wasn't happy knowing where he was going he WAS glad he knew why he was feeling what he felt. Research all you are able once you get as definitive as diagnosis as you are able, and share information with your husband. Anxiety, I am CONVINCED makes this illness worse. Lessening worry and increasing fun things to do even is that is merely sitting and talking honestly, helps.
Helpful Answer (3)
Reply to AlvaDeer

He absolutely will not exercise. It's so frustrating. 😔
Helpful Answer (1)
Reply to Marywithani1234

This sounds so sad.

Did you ask the neuro how they could find out if it is Lewy body? If I were you, I would also want a definitive diagnosis. I am working on getting one for my mom as she is definitely declining and I want to know exactly what the cause is and the level of decline, etc. It's not easy, and for us, so far, everything has come back negative. One more thing to test and then back to the doc that gave the initial memory testing.

Sounds like he might still be a bit depressed. Is he on anything since the breakdown? Get him out for a daily walk. Get him out in the sun. I'm sure there are many other things you could try to get him out of this funk, if that's what it is.
Helpful Answer (1)
Reply to againx100

Ask a Question
Subscribe to
Our Newsletter