Beginning

We went to the hospital for DH's annual workup last week. The workup gives us a snapshot of how he's doing, and I get some caregiver tips that are helpful. I knew that there was a steep drop off this past year, which was confirmed by his test scores. DH is now 62 (for anyone who hasn't read my earlier postings, he was diagnosed at 58 and had no family history of the disease).

His mini-memory test score dropped to a 10 this time, entering the severe impairment stage (from an 18 or 19 last year). The hospital said this was a bigger drop than expected, but the early onset form of the disease is more aggressive. DH needs to start wearing his safe return bracelet since he may become disoriented, and needs to stop doing mechanical things (last week he tried to use the snowblower! of course it was "broken"). They showed me his clock drawing. DH could never draw a clock with the correct time (not even when first diagnosed), but at least his earlier clocks were identifiable. One of his clocks even had arrows on the hands! The clock this year had blobs instead of numbers, and he didn't draw any hands at all.

The Alzheimers' nursing home/death calculator (internet search of Alzheimers + calculator) shows that 75% of patients with his score, age and similar information die with 5.5 years, and that he may enter a nursing home within 3years. This is consistent with the prognosis that I received from the hospital, since they told me that he may need nursing home care before our youngest graduates from high school. As others have pointed out, though, they said every patient is different and this is a hard disease to predict.

I first came on this board after he was diagnosed, and was scared amd heartbroken. Well, the middle kid is about to graduate high school with honors, and the oldest is doing ok in college. I am still keeping things going. It's not easy and I sure wish I had family members to help, but I want to tell anyone dealing with a new diagnosis that you DO have time...I felt like my world had ended when we got the diagnosis, but here I am three years' later. We're still a family, and we're still coping. It gets harder, but you find that you get stronger. And it's Sunday, and I just got through another week...so there's always something to be grateful for.