Caregiver Isolation as Cultural Disease

My wise Korean friend JungJa and I had a good long talk today.  She’s lived in this country since she was 19 and has an Anglo-American husband, so she has an insightful perspective on cultural issues.  She’s concerned, as we all are, about how elders are treated in this country, especially when they move into facilities.  Though she didn’t understand these things at all when she arrived here, her native country as it modernizes is just beginning to move in a similar direction.

Today I brought up with her how routinely surprised I am that a chunk of the visiting families at my mom’s memory care so often seem to have tunnel vision — they can only see their loved one as they walk in for their visit — have no idea what the other residents’ or caregivers’ names are, how they live, or what they love.

If these visitors lug in a big box of chocolates, a huge bouquet of roses , a squirming puppy, or a cooing infant, they don’t seem to notice how many of the residents see them walking in and want (and desperately need) to share in that joy.

There are thankfully always some wonderful exceptions to this who really stand out.  Some family caregivers routinely interact with people they come across, volunteer their time to help, and pass their babies and gifts around without a thought — all of which they give more generously and spontaneously than I could ever do myself.

Others do as much as they can — sometimes visiting privately, and other times including a small group or a few closer pals of the resident.

This isn’t about judgment, or to make tired caregivers pressed for time feel guilty about not doing more.  Quite the opposite, for several reasons.  First, my philosophy about people is that almost everyone at any given time is doing the best that s/he can, even if it appears otherwise.  Secondly, I’ve found that when I challenge myself to bring a little extra something from home to share with other residents, my mother and I benefit too.  It’s less stressful, a lot more fun, and the energy is contagious.

Another major unforseen great gift from this has been that I keep meeting other family members through my interactions with their parents, and we’ve started to exchange information and create our own little support group (mostly via email).  We update each other on each other’s parents’ status after visits, advocate for needed changes at the facility, and vent privately as needed about the many stressors that surface in the week of a caregiver.

It’s been a huge relief for us to know that if we have to go out of town, there’ll be at least 3-4 pairs of watchful visitor eyes on our parent, at least for a few minutes.  It’s made a dramatic difference in their quality of care, too, because any unmet need for the residents we’re keeping close tabs on gets reported to the caregivers by any one of us when we’re there.  And once we got into that habit, we started attending more to residents who have no family.  It’s a pretty contagious awareness and attitude, and our culture needs it a lot more.   Being a bit nosy isn’t always a terrible thing!

Though I’m naturally curious about people, their names, and their lives, and do keep up on that information at Mom’s place, the sharing of my visits doesn’t always come naturally to me.  There are times that it just doesn’t work, too.  Intimate, private visits definitely have their place and benefits, but I’m often left wondering why we as a culture have that tendency to want to hole ourselves up, not talk to other families or residents- keeping both our suffering and our good times all to ourselves.

My friend JungJa calls this the American "shyness".  When I asked her what she meant by that, she said that we’re so individually focused as a culture that we don’t feel other people aren’t "our business", and vice versa.  As I see it, keeping to ourselves too much is a cultural disease that’s causing unnecessary strain on everyone, and endangering our quality of life all around.

When we "look the other way," in our neighborhoods, or in a senior facility, we’re denying ourselves and others a greater sense of safety, belonging, and respect — a sense of community that we all ultimately need, like it our not.

Personally, I can be quite an introvert and even a hermit — especially in winter, so I’m speaking from experience when I talk about these isolating tendencies.  Probably a big reason why I blog and why I recently just gave in and finally joined Facebook is that I feel best with lots of alone time, but do really want to connect with others.

How do you feel about these issues?  What are the small, quiet, or maybe more dramatic ways that you create community as a caregiver for yourself and others?

Margaret Massey is a gardener, herbalist, crazy cook, part-time teacher, bike commuter, cat mom, caregiver, and a big fan of Peace Pilgrim, Wendell Berry, Thich Nhat Hanh, and Pema Chodron.  Margaret writes her blog, The Dopamine Diaries, with the goal of providing a down-to-earth, spunky and humorous glimpse at the heartache and joys of witnessing life with dementia and Parkinson’s disease through her mother. She currently lives in Wisconsin with her bike-happy husband, two spirited cats, and many, many plants.

Posted: 1/13/2012 5:28:45 AM by Cathy Whitlock

Browse current and archived blog articles written by caregivers, for caregivers.

May 2015
Part 2: Tips for Parkinson's Caregivers to help improve quality of life

April 2015
Tips for Parkinson's Caregivers to help improve quality of life.

December 2014
Keeping Watch

November 2014
Resources for People Who Care for Someone with Parkinson’s

September 2014
I Don't Like Parkinson's, but I Love the People in My Life

August 2014
Baby, oh Baby?

July 2014
When the Caregiver Takes a Break

May 2014
Arriving at Thriving

March 2014
Adult Swim

February 2014
5 Disability Insurance Issues Worth Talking About

December 2013
DBS: How it changed darkness into light

November 2013
Family Caregivers Deserve Special Recognition

September 2013
Saving $49,500 for a Good Night’s Sleep

August 2013
Growing Up with Parkinson’s

July 2013

June 2013
I Wish I May, I Wish I Might

April 2013
5 Grab-and-Go Healthy Snacks for Parkinson's Caregivers

March 2013
5 Caregiving Tips for Lewy Body Dementia

January 2013
Lewy What?

November 2012
How to Support a Caregiving Spouse: Three Tips from My Other Caregiving Half

October 2012
Bobcats and Turtles

August 2012
Build a Ramp

July 2012
A Bathroom That Works

June 2012
Lessons in Care, Lessons in Time

May 2012
Welcome to CareZone

April 2012
Dignity and Empathy in Caregiving

March 2012
Notes from "Movers & Shakers with Parkinson": How You See Your Changing Roles

February 2012
PD Inpatient "Care": Inept, Indifferent, Incompetent, Insufficient, Injurious

January 2012
Caregiver Isolation as Cultural Disease

November 2011
How to Take Care of the Caregiver

September 2011
The Disregarded Costs of Agency Care

August 2011
7 Tips for Hiring Good Caregivers

July 2011
Parkinson's and Your Voice: The Essence of You

June 2011
7 Ways a Care Recipient Can Help Alleviate Caregiver Burnout

May 2011
Lessons Learned About Caregiving for a Person with Parkinson's and Alzheimer's Disease

April 2011
Communicating With Your Partner When Speech and Voice Are Declining

March 2011
Long Distance Caregiving

February 2011
Financial Planning Webinar for Caregivers

January 2011
Caregiving Tool: A Home Healthcare Management System

December 2010
Caregiver Sanity: Three Things I Try to Remember

November 2010
Appreciating Family Caregivers

May 2010
Good Body Mechanics for Caregivers by Kevin Lockette, PT

March 2010
Taking the First Step in Your Own Care by Carol Levine

Currently: 0 (0 ratings)


Each month, we will feature a new column by caregivers on topic important for caregivers of people with Parkinson's disease. Read the latest column now.

Subscribe to this blog