“The thing that caregivers fear most”

Catherine, a member of our local support group whose husband had corticobasal degeneration, forwarded this recent Huffington Post article as it really hit home for her.  The article discusses the difficulties  caregivers experience as their loved one becomes increasingly ill, as  time becomes short, and doubts appear about the caregiver’s ability to manage everything.

Steven Russell, Brain Support Network’s treasurer, read over the article and shared his comments:

As my father’s primary caregiver for the last six years of his life, I remember how many times the ideas expressed by the author came to the surface as anger, fear, resentment and frustration.  Here are the key ideas from this article that resonated with me.

#1 Actually, it is when you realize the possibly long-term nature of the care that you begin to question your abilities.

“But as any caregiver who is being honest will tell you, the scariest part is not when defeat starts to creep in around the edges. It’s when it doesn’t and you start asking yourself ‘how much longer can I do this?’ It’s the status quo and the possibility that this is my new normal that destroys me.”

#2 You think you are at a “plateau” and then the bottom drops out.

“Once you step on the medical treadmill, there is no way to slow the damn thing down.”

#3 All caregivers have these feelings.

“Ask any caregiver and they’ll tell you we are the invisible patients, the ones whose needs are neglected, whose pain goes untreated, whose job it is to be cheerful and keep the family train running on time while we die a little more inside each day.”

#4 And if only those we care for could “try harder to get well, try harder to appreciate us, try harder to understand that our best may not be enough but it remains our best.”

Relying on friends, family and community support (like our caregiver support group) can help you focus on your needs as well — something that is vital for both you and the person you are caring for. You needn’t experience these feelings alone.

Here’s a link to the article:


This is the thing that caregivers fear most
The worst part is not when defeat starts to creep in around the edges.
Huffington Post
by Ann Brenoff
August 25, 2016