Caregiving Without An Attitude

By

A few months ago, I attended a memory loss conference and encountered what I refer to as an “Alpha Alzheimer’s Caregiver.”  I’ll call her Deborah.

Deborah is the type of women who brims with confidence, seems to have all the answers and uses every opportunity to share her own personal experience and opinions.  Deborah wasn’t a speaker at the event, simply an attendee like myself.  However, since she was helping to care for her elderly grandmother, who had been diagnosed with Alzheimer’s about three years previously, Deborah assumed she was a cognitive loss expert.

During a break-out group session I was thrown together with Deborah and four or five other women, all of us family caregivers.

The group members were to briefly address their individual care giving experiences and specifically discuss the challenges we were facing at that point in time.  Ultimately, we were to determine if we could pinpoint any common threads or themes.

Deborah, being the alpha caregiver she is, immediately assumed the role of group leader.  As the other women tried to tell their stories, Deborah interrupted and confidently voiced a solution for every challenge that was shared. For instance, one participant was dreading the car conversation with her husband.  Without missing a beat, Deborah said, “When we didn’t want my grandmother driving anymore, we told her that someone had stolen her car, then crashed it.  Worked like a charm.”

Horrified looks all around.

I felt Deborah was coming across as an annoying know-it-all.  After just a few minutes, I could tell by the body language of the others that I wasn’t alone.

I was just about to speak up when one of the event organizers stopped to listen to our group.  She sensed the situation, assumed leadership and quickly redirected us to a more equal footing — one that would allow for a conversation rather than a lecture.

Confrontation averted.  This time.

Sadly this hasn’t been my only encounter with someone like Deborah in the Alzheimer’s care-giving world.

I’ve come across a fair number of nonprofessional caregivers who consider themselves experts on everything Alzheimer’s, and they relish every opportunity to give advice and share their “expertise.”

These people are irritating and sometimes hurtful.

Don’t get me wrong, offering suggestions can be helpful and appreciated.  We can all benefit from others who are on the Alzheimer’s journey.  But advice must be shared with kindness instead of an I Know Best attitude.

To the Alzheimer’s Alpha Caregivers, like Deborah, who have a propensity of telling other caregivers what will and what won’t work, I say this: Remember, no two Alzheimer’s journeys are the same.  While we can relate to each other’s experiences we have not walked in each other’s shoes.  Do not assume you know exactly how I am feeling or exactly what I have experienced.

And then I would add this: Caregivers do not want a pat solution.  What may have worked for you may not be effective for me.  Many times caregivers simply need to tell their story and be heard with respect and understanding.  Other times we need someone to acknowledge our contribution and to tell us we are doing a good job.

The Alzheimer’s journey is difficult and draining.  It is certainly one of the most challenging of caregiver experiences.  Let’s remember to be supportive of each other and ditch the know-it-all attitude.

This type of superior attitude isn’t helpful.  On the contrary, it is downright harmful.

Nancy Wurtzel is a public relations professional and creative writer.  She pens Dating Dementia (www.datingdementia.com), a mostly humorous and sometimes twisted blog about making big changes at midlife.  Read about Nancy's journey through divorce, moving across country, empty nest issues, baby boomer challenges, dating and caring for an aging parent with Alzheimer's disease.