The Caregiver Community: Healing or Hurting You?

I set my alarm this morning for 4:30am. in order to write this blog about the concept of community. I have been pondering my current “tribe”; the people around me providing support, encouragement, laughter and love.  It is my special community that has evolved around me that has sustained me as my mother’s caregiver.

It has been 3 years, 1 month, 2 weeks and 3 days, since I moved my mother in with me.  Yes, I count every day, week, month and now year, as it is one of the hardest transitions in my life.  I look back many times and wonder, how have I done it.  How have I survived the battles with Medicaid, with insufficient services, with negligent doctors, while working fulltime, starting a business, going to school and taking care of my own health?  The answer always comes back to three things, (1) my faith in God, (2)my resilience and (3) the people who surround me, my community.

When I first started this caregiver journey, I reached out to all the typical players, the Alzheimer’s Association, national caregiving organizations, Rosalyn Carter Center, local faith-based support groups, Emory ALZ Research Center and on and on.  I joined online support groups and chat rooms, seeking the hands of strength and searching for answers I so desperately needed.  What I found was the exact opposite.  Their answers are rooted in the ideology that if you just knew how to be a better caregiver, you would have less stress.  All the tips and suggestions diminish you as a person and only define you as a caregiver.  The so-called “support groups” turn into a depressing, hopeless space of desolation and despair.  It is consumed with caregiver complaint after complaint and excuse after excuse of why their lives are now destroyed and nothing can be done about it.  Its the systems fault, its the incurable disease that only leads to death, its the lack of family support or financial resources.

After spending my first year engulfed in a failed caregiver support system, I started to focus on my own health needs, removed myself from all caregiver support groups, and “smoke and mirror” organizations whose whole function is to protect caregivers.  There is a tagline that a lot of “helping” organizations use, “do no harm!”  Well, all of these groups and organizations were harming me, exhausting me and were not pouring life into my situation.

As I began my journey with health and wellness, I joined small group classes at my gym, enrolled in a Health and Wellness Coaching Certification and a Spin Certification.  A natural occurring community emerged and now, 3 years, 1 month, 2 weeks and 3 days later, I am more resilient, healthier and vibrant than I was prior to caregiving.  The people around me have wrapped their arms around me as an individual, not as a caregiver.  They have created a tool of respite for me, a positive outlet and an avenue to a healthier me.  Their impact on my life exceeds the caregiver role and has forever changed who I am for the better.

When I think of “my community”,  a set of characteristics becomes evident and are what I believe are a foundation for the caregiver community.

Creates a space for freedom
Opens doors of opportunity
Magnifies your individuality
Mobilizes your goals and dreams
Understands your uniqueness
Navigates stress in your life
Initiates growth and potential
Tackles challenges collectively 
Yields Grace and Mercy

If your community is not building you up, creating a space for individual freedom, assisting you with setting goals and priorities for your life, now is the time for that re-assessment of who is surrounding you.  Who and what do you need to evict from your neighborhood in order to grow, to heal and to be whole?

“Devote yourself to your community around you, devote yourself to creating something that gives you purpose and meaning.”   – Mitch Albom

 

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