5th anniversary

[Guest guest]

Today is the 5th anniversary of Bob's crisis that made me realize something

was very, very wrong. I had been working in Baltimore and Washington, 1000

miles away, for over a year, and he had done nothing about putting the house

on the market or preparing to move, in spite of his strong encouragement to

take the transfer. Instead, he bought a beautiful older wood boat that

needed work, with the intention of putting it into tourist service. Great

project, but the boat had problems, and unbeknownst to us, so did he.

He called me on a Sunday morning to ask if I had given permission for all

those people to spend the night in our house (with him). The hallucinations

were so real he was calling me from a pay phone at Burger King so as not to

insult his visitors who might overhear him at home. Suddenly a lot of things

that had seemed odd fell into place. I was on a plane at 5AM Monday.

Chaplain picked me up at the airport and drove me home. Bob wasn't

surprised, eventhough I hadn't told him I was coming, and was so genuine in

his relief that I was there. He was bent over at the waist and had to look

over his glasses as he couldn't see through them, and his hallucinations and

delusions were vivid.

We got lucky with an emergency neurological appointment and did rule-outs to

ensure there was no infection or injury. That was the first of 3

neurologists to say, " I don't know what it is, but it isn't Alzheimer's. "

The doctor said Bob shouldn't stay alone anymore, so I had to make

arrangements to take him back north with me. Fortunately, I had a lot of

leave on the books and took advantage of it for a month, trying to make some

sense out of the mess our beautiful home had become.

We were very fortunate that the brand-new-to-our-clinic doctor would take Bob

as his patient. He sent us to another neurologist who sent us to s

Hopkins. It was a full 7 months to get all the tests and a diagnosis. We

were fortunate that a brand new medication, on the market for only a year,

was helpful. It was Aricept. Four yrs later it is still working to manage

the cognitive aspects of Lewy Body Disease.

I was granted extended leave to come back to Mobile to sell the house and

take care of the mess that some of our affairs had fallen into, which I

thought Bob was handling. Not. Meantime, I was not happy with program

changes with my job. The best estimate for life expectancy for his condition

at that time was 7 years with global dementia prior to death. More recent

studies with a larger population indicate that that isn't necessarily so.

But it all combined with me deciding that spending the few remaining years

with him was the most important thing to me, so I quit my job. He, my

mentor, argued against this decision, as we both like me better when I'm

working.

It's been a rollercoaster ride. There have been some really bad times, there

have been good ones, but always that decline as the good times are less and

less frequent and less and less good. It's been several years since I saw

the man I married 18 years ago. But today he did something he hasn't done

for years. He swept the kitchen floor and then vacuumed the rest of the

house!! I am in awe!

I am also in awe of how well he is managing emotionally. For years I

wondered if he truly understood the nature of his disease - was he

intellectually capable, was he in denial. Or was he just being " himself " to

manage as he has, quietly and without any fanfare. I tell him from time to

time how much I admire how well he manages. A few days ago he told me how he

hates what this is doing to his mind and body, and expressed so much

emotional pain that we both teared up.

This is not a celebratory day, although perhaps it should be as he is not in

the group that declines rapidly. I am very grateful to you all who help me

walk this path. Without this support I couldn't have made it as well as I

have since we came home nearly 4 yrs ago. Thank you.

Cheryl