“I Want To Get Out!”

For the last week or so “I want to get out” has become Mom’s new favorite saying and it is breaking my heart! We’d all become used to hearing her say “Our Lord and Savior Jesus Christ” hundreds of times a day over the last couple of years and that phrase always gave me hope that Mom was in a place of peace. Many people with dementia repeat the phrase “I want to go home” over and over and whenever Mom would say that she’d also immediately let you know that “home” for her was in Washington, DC the place where she was born in 1929 and lived until she was 80 when I moved her to Maryland to be closer to me.

But things are changing, and now when she says her new phrase “I want to get out” she means she wants to get out of bed and GO!! BUT SHE CAN’T!! This week is the first time she’s gotten angry about her situation. She’s flung back the bed covers and tries to swing her legs around determined to get out of her bed. If you are new to this now 15 year journey with us you may not know that Mom had escaped several times years ago when she could walk faster than most people half her age. The police had to be called twice to help locate her and once I got her back from a Facebook post! I fear that somewhere in her brain she’s recognizing her limitations and not liking it all!

When she insisted the other day that she wanted to walk, Janet helped her take the few steps from her wheelchair to the bedroom doorway. Every other day when they get her out of bed, they’ve been taking her out into the sitting area right outside her bedroom so she can sit with her roommate and she seems to really like that. I feel so HELPLESS in all this! One of the things I was looking forward to most when I retired from my full time job at the end of June was to spend lots of time with Mom. But with the COVID variant running rampant, my visits are limited to 30 minutes every other day. While I’m grateful for ANY time with her, it’s soooo hard to be outside on the patio with her inside in her wheelchair. Even worse is the fact that I can’t hug her!! I thank God for the photo pillows my sister-friend Kris gave us so we can at least hug those when we are sad. Often when Janet checks on Mom in the middle of the night she’s holding on to that pillow with our photo on it. I pray the pillow will continue to comfort her now that I can’t.

Mom’s been in hospice care since March 23 and at first she was sleeping a lot. She seems to be really alert right now as during our last visit she even sang a few words to the Aretha Franklin song “You’re All I Need To Get By!” that came on the XM channel I playing for her.

That song definitely reminded me that right now I’m definitely NOT all Mom needs to get by, so I am eternally grateful for the awesome Caregivers at Lifesprings Eldercare for taking care of her and keeping her safe. I pray that my 30 minute visits with her gives her some joy even without my touch. Lord know I want EVERYONE with this horrible disease including my Mom to be able to “Get Out” of this nightmare they are living in! I wish they could walk wherever they want to go and be able to find their way back by themselves. And more than anything I wish I could take her hand when she says “I want to get out!” and say “ok, let’s go” and go for a really long walk like we used to. Because none of that is possible, my goal for today’s 30 minute visit with my Wonder Woman Mom will be to smile, play music and to leave her with some joy without showing her how totally helpless I feel right now. We may both be a little down these days but the one thing I can guarantee is that this disease will NEVER steal my HOPE! One of my hopes for all of us is that we will have an opportunity to be ALL someone else “needs to get by” today! Love you Mom, see ya later!