Beginning

Thanks to everyone who gave me some boosts recently. We all get through one day at a time. I keep trying to keep our family life as calm as possible, but it can be very tough -- and our teens are clueless. Trying to communicate with them is like being in a bad Comedy Central sitcom. At this point, I've decided that someone switched aliens with them at birth, and they have little peanut brains that simply can't grasp the concept of MOM NEEDS THEM TO HELP. Their version of helping is to do their homework without complaining, and if they do any chore they call me at work to report what a big help they've been...and by the way, can they have some money, the car keys, or four kids over for a sleepover that night. I'm making notes to write a book about them someday.

It was 3-years ago that my husband's diagnosis was confirmed, when he was 59. Again (some of you are probably tired of hearing this), he had no family history of the disease and was very healthy, so this came as a huge shock. This week we went for his Yr 3 annual appointment to have his test results updated. We don't have the final test scores yet, but preliminarily it was confirmed that the decline has been steady and that it appears he has entered the moderate range of functioning (generally scores in the 20s indicate mild impairment, in the teens are moderate and in the 10s are severe). We knew that he had a drop-off in the last few months, so it wasn't a big surprise.

In our case, I can give as an example for the deterioration in 3-years the number of directions that he can follow at one time. In the first year, he could do a chore that had 3 or 4 steps to it. I could ask him to get a garbage bag, empty the garbage cans in the house, and then take the garbage bag to the cans outside. In the second year, he would be able to empty most of the garbage cans into the garbage bag...but he might forget to check some of the cans in the house, or he might forget to take the bag outside. In our 3rd year, I'd have to remind him to empty each can in each room -- he can remember to do one thing, but tasks with 3-4 steps are impossible. So he's still functioning, but we are seeing a continuing decline.

In this visit, the type of counseling we received changed. Although he's at a high-moderate range, I got advice on obtaining day-care, getting him to wear his "Safe Return" bracelet, monitering his medications, and similar practical suggestions that we hadn't really needed to address earlier. Knowing that we're officially in the moderate impairment stage now, I'll go back and re-read all of the books I bought when my husband was first diagnosed.

I was give a great free book by Forest Pharmaceuticals for activites to do with an AD patient. It suggests various outings, including an art museum, fruit-picking, looking for sea shells, and concerts. One suggestion was to attend school sporting events, which are very inexpensive (including the $1.00 hotdogs!). Other suggestions include watching old movies or tv shows that might even trigger memories, and letting the patient do various things that might simulate the person's former occupation (for ex., giving a hairdresser rollers and brushes, or giving an office worker various colored papers to sort. It looks like this book will be a helpful resource.

I hope this history is helpful to someone else going through this. Three years ago I believed our life was over, and was totally panicked. We're living with the disease, and still managing ok. I hope I can still say the same thing after our 4th year.