Surviving Alzheimer's 25 TIPS for Caregivers: ...And More Confessions from a Caregiver

BONUS TIP #26

When all else fails, feel free to use our secret weapon: BETTY. Betty is the make believe woman we blamed for everything.... Lost hearing aids, missing money, stale coffee: Betty.

In November of 2013, I brought Jazz and my mom to a caregiver conference. In the midst of my ready-made speech, Jazz raised her hand.And so I called on her."Mom! Mom, tell everyone how fun grandma's funeral was!" Jazz just put the "fun" in funeral. I had to stop and think.

My gram never had a driver's license. She barely left the house, even when she was healthy. She spent the last six years dying from a broken heart and Alzheimer's disease. And yet my gram, somehow, made forty new friends that were half her age during that time too. And they all came to say goodbye. If she were here, she wouldn't have known any of them. But they knew her.They were laughing, crying, retelling stories, singing her favorite song: "Let's Make Believe That We're Happy." They were having fun.I was in awe. It made me think maybe our caregiving fiasco wasn't a fiasco at all. Maybe, just maybe, we got a few things right.

You should have seen this wake; it was standing room only. And, damn, was it fun.

...Full-time caregivers don't enter a dread zone as part of their daily routine. Their tactic is adapting to a world that doesn't appear to have a beginning or end, so they adjust by staying even keeled-managing high energy, low energy, no energy, emergency, insomnia, exhaustion, hysteria. Months of full-time caregiving can feel like one long day. But it's not the sort of thing that is "dreaded," like winter, or taxes, or getting a colonoscopy. There's no emotional buildup in full-time caregiving to produce a feeling of daily dread, like with part-time caregiving. They both have their challenges. There are a lot of incredible people in the world who aren't capable of this job at all. I commend anybody who's been mastering the art of compassion, patience, tolerance, swallowing tears, and biting their tongue by being a caregiver at all, even if it's visiting "Dad" for just an hour a day. Let's not compete for most hours logged. The key to effective caregiving isn't about the big picture; it's captured in the tiny moments.

Excerpt from....What Now? Life after Caregiving

I woke up this morning easy enough. But as I crept down the stairs to make Jazz breakfast, I turned and yelled in a whispery voice, "Be quiet when you come down, sweetheart! We don't want to wake G.G.!" As soon as the words escaped my lips, it was as if the biggest bully on the playground had punched me in the gut. I grabbed my stomach with one hand, the wall with the other because I thought I was going to puke. When that feeling passed, I nice big jolt of "crazy" hit. And then after that, I waited and waited without moving an inch. I was waiting for the big blow, for Jazz to yell back, "Mom, you silly head! G.G.'s dead!" There was nothing but silence, which meant Jazz must not have heard me. She's like my conscious; she'd never let something like that slide. I concluded she wasn't paying attention. Thank God. Anyway, that's how I started day four of my new life without G.G. I was ending it by reading to Jazz with tears streaming ferociously down my cheeks, speckling her book, wrinkling its pages. "Mama, Mama? Are you okay?" she asked."I'm okay, babe. I just miss G.G."And then Jazz went to the window, looked up into the black night, and said, "She's right there. When you miss her, just look for the brightest star in the sky and wave. And you won't miss her anymore."