The Need for Caregiver Support Groups

By Pastor Jeanette Jordan

Seek Help!

I am so thankful for the opportunity to share my journey as a Caregiver with those reading this blog.  I am my husband’s keeper!  Robert A. Jordan, M.D., a prominent Chicago Pediatrician, was diagnosed with Alzheimer’s, a form of Dementia, in 2014 and forced to retire from his private practice in 2017. June 30th, 2017 to be exact is when this unforeseeable journey began. 

That’s when I had to come to the realization that life would not be the same and a change was imminent!  That’s when it registered that for better or worse, for richer or poorer, in sickness and in health was about to kick in, until death parts us!  

Even though I had been anointed and appointed to trod on this new path as a care partner, never in my wildest of dreams had I expected that this  BOAD (beast of a disease) Alzheimer’s, would send me on paths that would cause me anxiety, crying spells, fear, agitation, depression, and that my life would be altered til death would separate us!  Living life as a different kind of widow is one that needs ongoing support!  Although my husband is still living, I feel like I have lost him to Alzheimer’s, which is very much a source of grief and loss for me. 

Acknowledge Your Feelings

I felt all alone on this journey and that nobody was going through the agony and pain I was feeling.  I felt the embarrassment of people seeing me, the strong one, crumbling at not being able to handle this new lifestyle.  This diagnosis had me feeling defeated for not having the answer as to how to fix this situation that I’d found myself in.  

Even though I had been a caregiver for my Dad for twelve years and a caregiver for my Sister for three, this was different! This is the love of my life,  my ride or die, my partner,  the father of my five children, my confidant, my consoler, my lover, my all that! Someone I had been doing life with for decades, now needed me in a different way.  I was now caring for my husband who could not remember he had retired. who did not remember we had moved to a new abode, and could no longer drive.  I grieved our old life together. 

It is Ok to Need Help

 I conceded to the fact that I needed help!  I admitted that I wasn’t as strong as I thought I was and finally succumbed to first seeking a therapist to help me work through my fears and anxiety.  This is the best decision that I could have made as a beginning step.  With my therapist, I was able to share my fears, expose my weaknesses and give myself permission to admit that I was not the Rock of Gibraltar!  It was while there, spilling my guts out to my therapist, that I decided to search for a caregiver support group, as well as learn all there was to know about this BOAD!

Educate Yourself

The first order of business was to learn all there was to know about Dementia, Alzheimer’s specifically. I grabbed from my bookshelf a book that had been given to me by my daughter, the one that I had been dreading to read, named “The Wide Circumference of Love” by Marita Golden. The author’s husband, an architect, suffered from this BOAD.   Although it was a frightening book for me to read, it was a reality check and helped me realize what my journey may look like.

I also purchased the book “36 – Hour Day” by Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH. This book became my day-to-day, my go-to for caregiver tips.  I also enrolled in a clinical trial study from Emory University out of Atlanta Georgia, named “Tele-Savvy an Education Program for Dementia Caregivers.” Educating myself about my husband’s disease made me feel empowered and much more in control of our circumstances. I encourage others to do the same!

Find A Caregiver Support Group

Lastly, I  found a caregiver support group out of South Suburban Hospital., Hazelcrest, IL.  That support group was the best thing that ever happened for me. From there, I was directed to the Alzheimer’s Association, where I found all my hope and help.  I shared my story with them and was then invited to be a Volunteer Community Educator and Support Group Facilitator. 

Through my support group experiences, I have learned the importance of being a loving, supportive, knowledgeable caregiver for my husband and now advocate for other caregivers to educate themselves to do the same.  I am passionate about sharing my story so that caregivers and care partners can come out of the starting block knowing they have supporters that are there to share their testimonies, give tips, cry, laugh, and be that sounding board needed on this rocky, bumpy, unforeseen pilgrimage! 

 I co-host a monthly Zoom Women of Faith Caregiver Support Group Virtual Meeting sponsored by the Alzheimer’s Association. The original intent of this group was to support caregivers in the Chicago Area but has extended to Hawaii, the Bahamas, and other areas across the globe. This proves that caregiver support groups are needed across the world! 

My Passion Drives Me!

When I tell you I’m a passionate advocate for those afflicted by this BOAD,(beast of a disease) Dementia, and any other illness needing a caregiver or care partner, it’s an understatement!  I will be advocating for this disease until I make heaven my home. Until then, one of my utters to my Father who resides in Heaven is, “Here I Am I Lord, Send Me”.

-Pastor Jeanette

My loving husband, Dr. Robert A. Jordan (A reflection)

“I often look in the mirror and don’t know what I see. Is it my younger self staring back at me? Or is it someone who I don’t know his identity? In this moment I see his mustache is grey, That couldn’t be me, when did it get this way? I was just seeing my resident  patients yesterday. I start humming “Stand” that’s one of my favorite songs you see. Man, I really feel free as I get to the melody. A thought popped in my head, I hope my family knows I’m ok! I’ve got my friend Mickey every step of the way! Ok, ok, let me focus on this shave I’m running late. Me and my wife have a date!”

 Continue to follow our caregiving blog series at https://www.drjeanneporterking.com/caregivers-corner/

3 Comments

  1. Connie Lindsey

    God bless you Pastor Jordan! Your transparency and practical tips for support give wonderful insight and information for all who are caregivers to someone with Alzheimers/Dementia. Sending love and prayers for continued strength, wisdom and joy for the journey!!!

  2. Wendy Woodson

    I’m in tears reading this painful yet beautiful tribute and ongoing journey! You are indeed a passionate advocate for Dr. J. and others suffering from the BOAD of Alzheimer’s ! May God continue to bless you and your work, Bless Dr. J. In the fight, Bless your family with strength to help support and bless your village to continue to surround you all in love! I love you!
    Wendy Woodson RN

  3. Charmaine Schine

    OMG Pastor Jeanette Jordan my Big Sister this was Phenomenal it took me to another level with you, your story was also but yet Overwhelming at same time I can only imagine what you and others go through on a daily basis with your Love ones who are attack by this disease BOAD I will forever keep you all in my daily Prayers, this message or article has enlightened my Heart❤ and Encourage my Soul….
    May God Richies Blessings Bestow upon you forever…
    Love, Rev. Charmaine Schine

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