Tuesday, July 17, 2007

When Memories Fade Away

I think it's safe to say that when most people think of a fatal disease, cancer and AIDS come to mind. But cancer can be treated and there are survivors. There is another disease that's not at the forefront of conversations, media, and fundraising. It's Alzheimer's disease.

Alzheimer's is another common but very serious disease and in 100% of every case, fatal. There is no current cure. Treatments have very little effect on prolonging life and the success rate of those treatments on patients are even lower. Alzheimer's affects, over 5 million Americans and studies show that the cases of people affected with the disease is growing in epidemic proportions.

All I knew was that essentially the human brain "wastes" (shrinks) away and that the person loses their memory. But the disease goes beyond that because the brain damage as a result of Alzheimer's changes their speech, judgement, and personality. Eventually, Alzheimer's impairs their motor abilities. Which means they lose control of the things we take for granted like holding our head up, swallowing, and smiling.

I use to think it was an "old person's disease" but early onset can be between 55 and 64 years old. You see, my husband's uncle has Alzheimer's and it is one of the saddest things I've ever witnessed...it's just heartbreaking because, after 9 years of living with Alzheimer's, he is in the last and severe stages. He is our Uncle Frank.

I'm not writing so people can feel sorry for him, or to make fun of his condition, or to make light of this horrible disease. I'm writing of the Uncle Frank as I know of him.

Beneath the surface of his fragile shell of a body, I see a glimpse of what must've been a witty, kind, smart, handsome, and funny man.

The first time I saw Uncle Frank was several years ago at my husband, then boyfriend's, grandma's funeral. I had been told that Frank had Alzheimer's but besides him asking me the same questions, he appeared to be in good health and spirit. Such a jokester he was and never a dull moment.

When he came with his wife, Leanna, to our wedding last year he still looked pretty much the same. Just a little skinnier and not as much energy but he was still happy as all get out.

This time would be the third time I saw Uncle Frank. Leanna drove with him for three days from Montana and they were staying with John and Maggie. Their arrival was on short notice but we made sure to visit them this evening because it may be the last time we get together.

Now as Johnny and I drove to Boulder City after work, we knew that things must have changed with Uncle Frank. We heard things were bad, I just didn't realize how much until I saw him in person.

When Johnny saw one of his favorite uncles, he struggled to keep himself together and had to step away for a while to gather himself. I was surprised at how skinny Uncle Frank had gotten but underneath the gray hairs and wrinkled skin, I saw a familiar face...especially when he smiled.
One of the first things he said to me was, "I like you--you're nice!" and so that made me feel good because (I think) he remembers me. And then he walked over with a small metal box and placed it in front of me on the kitchen counter. Excitement rippled through his body as he gestured at the box. "Are you gonna open it?" He grinned at me in anticipation of me seeing what was stored inside.

Uncle Frank loves to carry this metal box with him for comfort. He loves boxes. What was inside was even better. I opened the container to reveal two beautiful die cast mustangs.

Like a little boy, he picked them up and rubbed the sides and the hood...trying to explain something I couldn't quite piece together from his fragmented sentences. I think he was trying to say that he painted and put the stickers on them himself. I could tell he was very proud because he likes to build stuff (and he stuffed one of the cars down his pants like a gun!). He's "built everything" and I'm sure that's true. Uncle Frank was a Jack-of-all-trades.

But Uncle Frank's favorite possession is this small stuffed panda bear doll which he keeps close by his side. If it's not safely under his armpits or tucked away in his metal box, it was in his hands; never to be left alone. (If you look carefully, it's in almost every photo...LOL!!)

One of his favorite foods is a hamburger. He fed himself and he ate EVERYTHING off of his plate. That is an accomplishment because in the advance stages of Alzheimer's, they usually need assistance with feeding themselves.

The tear jerker for me came when we sat down for dinner. John and Maggie asked if Uncle Frank would say grace. And without hesitation, he put his hands together in prayer and ... said grace. Except nothing he said was coherent; he couldn't articulate this thoughts into two words that, together, many any sense. But I think he thought he did as he went on with his prayers without a hitch until he finished.

I almost cried right then and there at the dinner table. I wanted to cry because he was so cute...like a little boy who barely learned how to speak and was mumbling every little word he could remember but Uncle Frank wasn't a little boy. He was a grown man who had seen and done so much more than the average Joe which I will share later.

His wife, Leanna, is "a saint" as I've heard John, Maggie, and Johnny refer to her. I could see the unconditional, unwavering love she has for Uncle Frank. Despite the challenges she's faced, especially recently with the added stress of her own health and additional loss of her own mother last week, Leanna remains such a strong woman. One would not have known that she has any weight on her shoulders at all (constantly checking up on Uncle Frank's diapers and tending to his every need and safety.) She laughs, jokes, and has such a gentle hand and heart with her husband. God bless her! (Uncle Frank himself is not all mentally gone. He still laughs at jokes and I could see the twinkle in his jokester eyes if he could just spit it out.)
As the night dwindled, we said good night and head out the door for home...our hearts heavy with what we had just experienced. We will be visiting Frank and Leanna one more time this week before they leave.

Seeing Uncle Frank was bittersweet. For everyone. Dealing with Alzheimer's is painful for the aware; those who have memories of what Frank use to be like before the onset of his disease.

I never knew what Uncle Frank was truly like since I met him after he was diagnosed and had lived with the disease for several years. I only know that he was an actor in Kevin Costner's movie, Dances with Wolves, and he was in another movie called F.T.W. Maybe I'll be able to post a photo of Kevin Costner giving Uncle Frank direction before a scene.

You can read more about uncle Frank in this article or check out Uncle Frank's filmography on imdb.com. I hope to be able to update his profile with a photo from his "star" days and a little bit of biography about the person he was. I think he would like that.

Since last week, his STARmeter went up 32% but in our hearts and memories, he will always be our BIGGEST star.

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