written by: Elayne Forgie of Elder Care Blog, Alzheimers Care at Home
The caregivers. They just keep coming. Heartbroken. Physically broken. Emotionally broken and often, financially broken. Struggling to make sense of what Alzheimer’s is doing to the person they love. How it’s forever changing their life and changing their entire family, in ways they say, they could never imagine.
They arrive clutching purses or carrying files overflowing with things they want to share. Things they hope I’ll explain, so they can make sense of the chaos that has become their life.
Then they sit. Stoically. Cautiously. Appearing in my trained eye, to be holding their breath. Not sure what to expect or where to begin; during this time that has been reserved just for them.
Soft music, lightly scented candles, and a soft pillow to hold on to, doesn’t do much until they center themselves. I have them take a few deep breaths, and I tell them it’s okay to fully exhale, let go, and release. And when they do, I can see their shoulders visibly drop. They sink further into the comfort of the overstuffed chair, knowing that right now, in this moment, they are okay. And then they open their eyes, and more often than not, they begin to cry.
The pain, anger and frustration is so powerful, it permeates the room. Some just stumble over their own words as they rush to get it all out, speaking as fast as they can, not pausing, almost as though they’re afraid that if they stop, they’ll never be able to start again. Never be capable of opening up and sharing their story, their fears, their anger and their frustration. Never be comfortable, trying once more, to share feelings of sadness or guilt, which up until today, many didn’t even, know they had.
So I sit quietly as they tell me some of their stories. I let them to tell me about the pain and sadness that has become so much a part of their life. Some sob, some yell, and some just speak softly, as the tears continue to come unabated, sliding down their checks and falling onto the files they so frequently bring along. Files containing list. Lists overflowing with questions they so desperately hope I will answer.
But I don’t have the answer they seek. I don’t have the answer to the one most important question asked by almost every man, woman, young adult, or child that comes to speak with me. I don’t have the answer to the one question that brings each of them to the edge of their chair; with tearful, beseeching eyes, and a choked-up voice.
The question they ask when they realize they’re in a safe place; a place where no one else will hear; the safest place for them to finally ask the one question that their doctors; their internet searches; their support groups; their file; their closest friends, and most fervent prayers, have still not answered… They ask me the question, “Why?”… And when I pause, they ask me the question again… “WHY?”… And when I answer by saying “I don’t know, I become the one holding her breath.
Holding my breath and hoping they don’t ask the one question I’ve been dreading the most. Hoping that when I say “I don’t know”, to answer their “Why”, question, they don’t pause, look at me and ask, “Why not?”…
I know it’s just a matter of time before someone isn’t going to be satisfied with the only answer I can give. When the words“I don’t know”, won’t be good enough. When they won’t hesitate to rephrase the question, push for a better answer and, when I can’t provide it, ask me “Why Not?” Why don’t I know? Why can’t I explain it? WHY?
As professionals, all of us are waiting for answers to the “why?” questions. We’re waiting for breakthroughs, hoping they’ll give us more knowledge. Knowledge we hope will give us more power. Power we hope will allow us to answer more fully the “why” questions. Questions that deserve answers that go a lot further than an “I don’t know”, response. Answers that will enable us to better assist the patients and clients we serve. Answers they want, answers they need and answers they deserve.
Author profile:
Elayne Forgie has spent the last 26 years working directly with patients and families living with Alzheimer’s disease or dementia. She has been recognized by Sharecare as the #3 Online Influencer for Alzheimer’s, and as one of Maria Shriver’s Alzheimer’s Advocates & Architects of Change. She is a contributing author to a number of blogs and websites including www.alzlive.com. She is the founder and CEO of the Alzheimer’s Care Resource Center, a 501(c)(3) not-for-profit organization dedicated to helping caregivers cope with the changes and challenges that accompany caring for someone with Alzheimer’s disease.
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