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.

You're doing a great job, Beginning. I admire you.

God bless you.

Love,

Martha

Hi Beginning!

It is so nice to hear from you! I think the new people we've gotten lately will read and be inspired by your message.

My son will be graduating high school in June. He's been accepted at a technical school in our area but is looking forward to an interview at Illinois Institute of Art. He wants to get a BA in Digital Film making and Video Production.

I can't imagine what it's like to be raising 3 kids and dealing with this disease. But I remember when you first came here. You've come a long way from where you were back then. I'm proud of you!

Love, Barb

Hey Beginning,

You've come a LONG way .. actually, we all have haven't we?

I am proud of you and your determination and strength, and applaud you in keeping your family as 'together' as you have under exceptional circumstances.

I know of a gentleman who's wife got early onset at the age of 52 (actually, I know of 3 woman diagnosed at 52, that's scary) and she had probably had early symptoms of the disease a few years before diagnosis. They divorced and once she got 'sick' got back together. He' a devoted husband, and abhored placing her in a nursing home but realises she's SAFE. He doesn't LIKE it, but he knows she's in the right spot.

When she was placed in the home, she was walking (pacing) constantly. Putting little things in her mouth (even nursing homes aren't child proof) and was a constant battle. Her doctor said "one day, she will simply stop walking, and that will be that". Well, she's done it already. It only took a few months. Early onset seem to hover in 'acceptable' levels but when they progress they do it fast.

I guess I'm also trying to say I hope you have a back-up plan, because you never know when you might have to put it into action.

Big hugs

When she was placed in the home, she was walking (pacing) constantly. Putting little things in her mouth (even nursing homes aren't child proof) and was a constant battle. Her doctor said "one day, she will simply stop walking, and that will be that". Well, she's done it already. It only took a few months. Early onset seem to hover in 'acceptable' levels but when they progress they do it fast.

I guess I'm also trying to say I hope you have a back-up plan, because you never know when you might have to put it into action.

Big hugs

Yes, it is amazing how quickly things can change. A lady was placed in my FIL's AD unit about 18 months ago. When she first came there she was walking constantly and was extremely strong. I think she was in her early 60's. She became increasingly sensitive to touch, began crying constantly, could barely eat and only wanted to lie in her bed in the last six months. Her funeral is today.

Jane