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The following is from the now discontinued StrokeNetNewsletter first posted in their August 2014 edition. Being a caregiver is one of the most demanding jobs there is. With the holidays coming up that extra stress is added to their already demanding tasks.
Also, today, Oct 29, 2018 is World Stroke Day. Here are some links from the USNews internet site that may interest you.
https://health.usnews.com/health-care/for-better/articles/2018-10-29/stroke-warning-signs-treatments-and-prevention
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| http://www.strokenetwork.org/ |
Caregiver Appreciation Day
By David Wasielewski
This past month, our stroke support group held a caregiver appreciation day. This was an opportunity for us, as survivors, to acknowledge the essential support we receive from our caregivers, be they spouses, family members or other personal assistants. Rather than focus on survivor stories and conversations we turned the focus to those who care for us.
We all know and understood our strokes from the survivor perspective. This session was an opportunity for us all to better understand how our caregivers were affected by our stroke. During early recovery in the hospital we, as survivors, find ourselves to be the center of attention. Our world centers on us, our survival and recovery. The universe revolves around our hospital bed, as it should. Doctors, nurses and therapists are paid to attend to our every need regardless of our attitude.
It’s easy to become lost within ourselves and forget about the real world. As we adjust to our post stroke selves, everyone who knows us is making similar adjustments. One challenge for survivors in recovery is to recognize and continue to keep in mind that having a stroke is not just about the survivor. One of my clearest recollections during struggles to recover was being confronted by my wife who was my primary caregiver.
As I ranted about how miserable, tired and frustrated I was she very clearly pointed out to me that “This is not only about you!!” At that point it hit me clearly that the stroke had also thrown her life into chaos. My stroke had forced her into an unexpected role and a routine that she was unprepared for and struggling to navigate. I have shared this realization with other survivors and most agree that this consideration has had a positive effect on how they move through their recovery. The caregivers that hear this advice can also understand that it is OK to explain their point of view in the situation.
Each caregiver at our session was asked to describe what had brought them to the group. These descriptions lent a very different, often unexpected perspective to each survivor’s story. Familiar survivor stories took on a new twist. Things might have been much more serious that we had been led to believe by the survivor. The survivor may not have been as cooperative in therapy or at home as we were told. The caring relationships between survivors and caregivers often became clear as they chided each other with funny stories about their struggles. It was interesting that in these serious and challenging situations we were all most able to relate to these humorous moments.
Caregivers shared how their conversations with doctors and therapists shaped their expectations for their post stroke lives. They also commented on how these expectations compared to the actual lives they now led. It became apparent how the caregivers had become the ‘invisible’ victims of our strokes. Their struggles were often secondary to the survivor. Given the opportunity to speak in this forum was our way of acknowledging and validating their reality.
As the caregivers relayed their experience several commonalities became clear. Was anyone prepared for what happened? No. Were the caregiver’s expectations realistic? Often not. Was the experience stressful, horrible, life altering? Absolutely! Are the strategies for recovery and moving on different? Yes, all are unique. Does anyone regret having done what they did in order to get to this point? No!
Everyone has gained a positive new perspective on their lives. How they view their daily routines is radically different. Their priorities have been altered. Surprisingly, as bad as these experiences were, most everyone agreed that the stroke had changed their perspective on life in mostly positive ways.
As a survivor and support group advocate I would encourage other groups to give their caregivers an opportunity to be recognized and validated. A day of appreciation is never wasted.
The following article details how caregiving can seriously affect the health of caregivers and the very real physical and emotional toll that caregiving has on a family:
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RRSC Blog Editor Note: The preceding link from the original post is no longer available. I included a link below that may be of help to caregivers, helping them recognise depression symptoms and treatment:
https://www.caregiver.org/depression-and-caregiving
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Copyright @August 2014
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
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