My Sister and Sir Tom Jones

My sister is something.

It’s not only that she’s intelligent, funny and witty. It’s more than that she’s such a great mom, a characteristic that carried over into grandma territory.

It’s not the fact that she grew up gracing movie-star good looks. Nor is it her unique creativity and style— including a talent for finding the most interesting, stylish articles of clothing ever discovered at the local second-hand stores.

I don’t pin it on her fierce independence or riled emotions that can rise quickly. She quelled but never lost the trait that led her, at age two-and-a-half, to proclaim that our twinkly-eyed Gramps was a ‘dummy-dope’ as she threw a shoe at him, all because her antics had him guffawing with uproarious good humor.

Lately, the wonder that is my sister focuses on her ability to fully enjoy life in the moment…her love of laughter and the zingers she flings about…her deep appreciation for long, intimate discussions...her gift for embracing quirky, humorous and touching stories.

It doesn’t hurt that she’s a great audience for my jokes, probably the only one in the world. I can tell her the same stories over and over and still expect a deep belly laugh and snorts of hilarity.

My sister has Alzheimer’s.

She was diagnosed several years ago at age 65. To me, deep-down she is still the sister I’ve always known even if that’s not quite true anymore. This is infinitely easier for me to say because I’m not the one fighting a daily battle with the disease. It’s not even my sister waging that war—she may or may not know that there is something terribly wrong with her. It’s her husband first and secondly her kids that take up the fight on her behalf.

Sadly, it’s a battle they are losing just a little bit more every day. But I’ve got to say, it’s a battle worth fighting. My sister fully enjoys the moments of pleasure and fun that life still affords her. That’s what I focus on.

I do help with her care, but not for extended periods. Add into the mix that I am not responsible for how to fund her care, manage her many medical problems, plan for her future and endure the pain, grief, heartbreak, uncertainty and the relentless, maddening frustration that living with Alzheimer’s means for family caregivers.

My sister cannot be left alone. She repeats the same questions and complaints over and over and over again. She is stubborn and easily agitated. She is completely helpless. As you dress her, lead her to the bathroom, wash her hands, direct her to the chair and pat it so she knows where to sit, guide her hand to the food in front of her that she eats with her fingers since she can no longer manage utensils…so much has fallen away.

But I try not to dwell on the losses. Instead, I search for and revel in moments of pure enjoyment with my sister.

We just want to have fun—it’s what we do.

My sister has a full-bodied capacity to feel the music. I mean, really feel it. Like many with Alzheimer’s, music has the power to reach out and grab my sister, to connect her with hidden feelings, long-lost memories and to the outer world in a very real way.

Within the last few weeks, she has developed quite a fan-crush on Tom Jones—he of the deep, booming voice and sensual delivery.

“He’s sexy,” she always declares when she hears his music. Certain of his racier songs bring a broad grin and devilish gleam to her eye.

My sister and I go on regular dates with Sir Tom as we drive around and listen to songs from his album, Reloaded. Tom doesn’t mind that we sing along with him off-key and at the top of our lungs until we’re hoarse with pleasure.

It’s fun.

Yes, my sister’s world is getting smaller and smaller; what little she can manage will diminish. But I intend to share with her as many instances of joy, moment-to-moment pleasures, as her life with Alzheimer’s allows.

p.s. When listening to Tom Jones, my sister asks the same questions: “How old is he? Where does he live?” Upon learning that he lives in England, she always sadly proclaims, “I’ll probably never meet him.” But miraculously, a few weeks after discovering her love of Tom Jones, I found out that he is performing at Seattle’s Paramount Theatre on June 1. My sister will attend this concert. You can bet she will relish the experience, moment-to-moment. And I will remember that night on my sister’s behalf for the rest of my life