Support groups

Supported was a tangent that derailed my intention to discuss support groups.

These have been a vital life-line on my side of the journey.

Early on, his first neuro team at Mt Sinai guided me to regular sessions with their social worker.  What a gift that was.

The social worker from his current neurologist’s office leads a group I attend monthly now.

Early in my travels, someone suggested I speak with Norma. (I did. We spoke for an hour and a half.)

Lewy Body Resource Center, founded by Norma Loeb, provides life altering help through support groups for those caring for a person with LBD.

I now attend one or two of these each month. Sometimes, I connect with a third one as well. We LBD carers share more than just the diagnosis, the symptoms of which both baffle and amuse.

On line, I use the message board of LBD Caring Spouses daily. Tips, suggestions, experience flow back and forth on the site.

On a Wednesday morning, I find myself in an alz.org spousal group, and then I head over to an intimate LBD Resource Center support group. Zoom meetings are so convenient to navigate.

I think I attend a half dozen each month. My special pleasure is the Caregiving Expressions, also an alz.org resource, where we write our experiences.

On occasion, I take advantage of a nearby support group and pop in in person. My local Lenox Hill Neighborhood House has hybrid offerings; you should seek some through Community Centers in your hometown.

In fact, no one should attempt this lonely energy-sapping excursion on their own.

Find support through CaringKind or Alzheimer’s Association or in online workshops.

There are many online supports: Dementia Alliance of NC and Caregiver Teleconnections. Teepa Snow or Dr. Natalie’s Careblazers. The Lewy Body Dementia Association has a YouTube TV channel.

There’s a lot of support to be found. Google it, find it! As the old ad used to say, “You’ll be glad you did.”