October 11 - Life after Caregiving

Ann Napoletan, author of The Long and Winding Road: A Journey Through Alzheimer’s and Beyond who cared for her mother with Alzheimer's and fights for dementia awareness, is today's guest blogger on Ostrich. Thanks Ann for sharing your story:

My mom fought Alzheimer’s for almost ten years; it’s hard to say exactly when it all started. Like many people, she was very skilled at covering the earliest limitations imposed by the disease. However, by the beginning of 2004, when she was barely 67-years-old, it was clear we were facing something the likes of which we couldn't have possibly fathomed without living it.

Embarking on the Unknown

It's nearly impossible to pinpoint which years were “the worst” or the most difficult. Each phase is so different; it’s as though you've set out on a walk in the woods where the path is clearly marked, but the deeper you go, the thicker the trees. Suddenly, you notice the trail is fading away, a hazy fog has rolled in, and you can’t see more than a foot in front of you.

Just like being in that thick murky forest with a disappearing trail, you find yourself uncertain – not sure which way to turn – so you gingerly take a step forward only to stop for hours as you painstakingly try to decide on your next move.

The Early Years

Those early years are challenging for many reasons. Initially, you simply don’t know what’s transpiring. I saw my mom slipping, but blamed her for not staying more active after retirement, as if what was happening to her brain was something she could have prevented.

There were so many arguments. She was angry, constantly on the defensive, deeply mired in denial, and undoubtedly scared to death. We all were. Thinking back, we never really talked about what was happening and I suppose there were many reasons for that. Initially, we didn't know, and then we didn't want to believe the rock in our lives – the strongest, most independent, wittiest, most loved woman we knew was beginning to melt away right before our eyes. Alzheimer’s happens to other people, not us.

The Beauty of Acceptance

As time passes, I think there comes a point where you reach acceptance. Everyone is on his or her own schedule; some get there sooner and some later. It’s at that point, though, that the fighting stops… the yelling ceases… the impatience wanes.

The pain is there, but tucked away neatly in a box on a shelf while you, the caregiver, take care of what needs to be taken care of. I learned that with acceptance comes a love deeper than I knew possible and a bond stronger than the most durable beam of steel.

By this time, sadly, your loved one may have lost their ability to communicate, but they are still in there. Don’t ever forget that – we’ll never know what they are able to comprehend, but they still have a heart that needs love, tenderness, attention, and affection. Even near the very end, though fewer and farther between, we were seeing very real bits of my mom – her humor, her personality, her love. Undeniably Marilyn.

Letting Go of the “Coulda, Woulda, Shouldas”

As I said, the early years are often fraught with denial, and it’s easy to look back now, with a decade of experience under my belt, and wish I’d handled certain things differently. “Coulda, woulda, shoulda” – none of that is terribly productive at this point, is it?

Mom’s been gone for almost ten months and I’m still working on getting to a place where I’m at peace with my mistakes and imperfections. The only thing I’m really certain of is that it will take more time.

I was out shopping tonight and saw a mother and daughter in the store. The daughter was probably in her mid-50’s and the mother perhaps late 70’s or a bit older. I stood and watched them for a second and thought, “I wonder if that woman knows how fortunate she is to be at the grocery store with her mother?” Someday she’ll realize she “shoulda” savored every moment, because each one is a priceless gift.

Lessons

Ah, the moments we all take for granted. That’s one of those lessons I hope I can pass onto other caregivers. With this disease, things will never be as good as they are in the moment you’re currently living. Next month or next year, Alzheimer’s will have maliciously robbed you of another bit of your dear loved one.

Wouldn’t it be grand if we could enter each phase of our lives with an instruction book customized to our exact needs? Do this, but don’t do that. Be more patient. Don’t say that, you’ll regret it. Don’t argue; it’s easier to agree or gently change the subject. Spend more time just being there. Don’t sweat the small stuff. Cherish the little things. Take more walks. Eat more ice cream. Hug more often. Did I mention don’t sweat the small stuff?

At the end of the day, I truly believe we all do our best. Like anything else in life, we get better with practice and experience. By the time it’s all over we feel as though we could lead an army though that dark, frightening forest with the disappearing path.

If only we’d known then what we know now…

Ann graduated with honors from Franklin University with a degree in Business Administration and works as a finance professional for a Fortune 500 company. Her interests include blogging, photography, reading, and travel.