Just Starting This Journey

I’m also glad you are here. We are all in different stages and those that are further along are very helpful for those just starting this journey. One thing that seems common is that our loved ones are always initially told MCI when in fact they are further along. By what you have stated I suspect your husband is in mid stage, so do review the stages of the disease, it does help. As far as driving, my insurance company told me they would not cover my husband if he were in an accident because he did have a diagnosis on his medical record. Driving equals independence and it is one of the hardest to deal with. It worked out fairly well for me overall. I started out by saying how about I drive us today. And if I was out and about I would ask if he wanted me to pick something up for him. I was a lucky one that my husband really didn’t care if he didn’t drive. Keep coming back.

Dusty…thinking on your feet is much more important than acceptance of. a diagnosis.

The "good" news is that it is almost certain that you are not going to run into a situation that is new so please know we are here to share what was shared with us.

Welcome. I highly recommend that along with the testing you have had done that you have a brain MRI and blood test for Alzheimer’s. Another thing we learned is that not all neuropsychological testing is the same as some tests are more difficult and access more information. My husband was diagnosed with MCI with a strong suspicion that Alzheimer’s was causing it. The testing refuted this. We have now reversed his MCI. Get as much testing as possible to get an accurate diagnosis. Come back here for support and help.

Be careful when discussing his diagnosis with him. There’s a very real possibility that he will become agitated upon hearing it, won’t be able to understand what it means, or won’t remember that he was even told a diagnosis. Most of us resorted to just mentioning ‘memory issues that come with age’. Even though dementia involves so much more than just memory issues.

The phenomena of anosognosia is real and common and can impact life with the loved one in so many ways. I look back and continue to be surprised at the lack of input regarding this from any of the doctors. Even as the neurologist saw it during her visits, it was never mentioned or explained. It is only because of this forum that I came to understand it and its' complexity. It caused several years of great difficulty with my dear wife and was very hard to deal with. There is no arguing, explaining, rationalizing, etc., that will resolve it for the loved one, at least not for us. In time it began to diminish but that followed her general decline in health and capabilities.

The anosognosia can persist throughout the disease in my experience. All that ended the rejection of the diagnosis was my wife's disease progression to the point where it did not matter. Be prepared to live with it in varying forms and changing forms throughout. Ask your questions here as you experience another change, someone has already experienced it and will suggest help. My wife was never violent or and was not too difficult as long as I accepted that she believed she was okay and was not ill. Had I known about the anosognosia sooner, it would have prevented some of the early challenges. It was never her, just my ignorance of how this disease evolves and this site made a difference once found.

That is a heartbreaking situation knowing him only 13 years and knowing the recent memories fade first. Just another nightmare aspect of this horrible disease and hope treatments slow the progress a lot and gives you the time you are seeking. just makes the message to all to not waste time and build memories more important as we never know what tomorrow brings. All the best to you as you walk this path with your husband.