Monthly Archives: August 2016

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:

www.huffingtonpost.com/entry/this-is-the-one-thing-most-caregivers-fear-most_us_57bb3c41e4b0b51733a4ef4d

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

Steven

Dorothy, whose husband had Lewy Body Dementia and is part of our local support group, forwarded this article on caregiving for a spouse from the current issue of Neurology Now.

Steven Russell, Brain Support Network’s treasurer, read over the article and provides a summary of the key points.

Although the title includes “spousal caregiver,” I think much of it applies to those who aren’t married as well as to those who are providing care and support as an adult child, friend, etc.  Although not focused on caregiving for someone with an atypical parkinsonism disorder, the article makes excellent points for anyone caring for someone with a chronic disease.

Here are some key points:

#1 Men and women have very different reactions as patients and caregivers and this can lead to big changes in relationships:

“Men are more likely to leave the marriage if they become a caregiver because they feel there is little they can get back from the relationship…  [Women] were six times more likely to be separated or divorced after a diagnosis than men in the same situation.”

#2 Get help early and continuously add to your care team:

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone.”

#3 Roles will change, whatever the relationship at time of diagnosis.  Figure out what needs to be done and have resources available:

“Both spouses need to come to terms with the change, accept it, and get help if the change is too much to handle.”

The author provides these tips for the caregiver navigating challenges:
* Prepare for change
* Reassess roles
* Resist taking on everything
* Avoid isolation
* Cultivate healthy communication
* Be open to intimacy
* Guard against depression
* Ask for help
* Carve out “me” time

Check out the article for details on each of these tips:

journals.lww.com/neurologynow/Fulltext/2016/12040/Tough_Love__Succeeding_as_a_spousal_caregiver.14.aspx

Tough Love: Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner
Neurology Now
by Paul Wynn
August/September 2016, Vol. 12, Issue 4

Neurology Now magazine is available by free subscription.  Click on the “Subscribe Now” link at the bottom of the article on caregiving.  You have to verify each year that you still want the magazine.

Steven