A Caregiver's Story #5- Andre and Charmayne
Updated: Nov 16
In the latest in our series of Caregivers Stories, we meet Andre and Charmayne and hear why they joined the #SeePainMoreClearly initiative.
Why Andre Joined the #SeePainMoreClearly Initiative as a Caregiver Partner
My story began when I started to observe my father in law-making irrational comments and presenting unusual behaviour. As an independent farmer and a businessman, he was a man that had always been physically and mentally strong. As the months and years progressed, it became more obvious that something was wrong. His behaviours became very apparent when my mother in law was not there to direct him. For instance, when he spent one night at the cancer clinic in preparation for radiation treatment and we checked on him in the morning, he was fearful and did not know how to take the elevator or go to breakfast. My father in law was an avid Saskatchewan Roughrider fan for over 50 years; it was heartbreaking to see him watch a Rider game on TV one day and ask, “what are they doing jumping on one another?” Dementia can be frightening and isolating. If I can do anything to assist in improving the quality of life and delivery of care for people living with dementia, I will.
Why Charmayne Joined the #SeePainMoreClearly Initiative as a Caregiver Partner
In addition to a nursing career where I dedicated several years to working in long-term care by providing direct care and in the later years leading a team responsible for staff education, my father was diagnosed with Alzheimer’s disease. In my professional work, I saw that behaviours related to physical pain were treated with antipsychotics. I was the lead on a national CIHI project where the health authority partnered with a local long-term care facility to examine antipsychotic medication use in long-term care. With regular pain assessment and daily behaviour mapping, we found that a number of residents' antipsychotics were reduced or discontinued and often replaced with more appropriate pain management strategies. With this knowledge, I was especially cognizant of my dad’s pain behaviours and well-being. Understanding the disease as a nurse was a significantly different experience from supporting my dad as he suffered through the debilitation and humiliation of the disease. My dad was a learned man and respected in the community. He and my mom together operated a successful mixed farm operation. Dad obtained his pilot’s license at age 40 and following a semi-retirement from farming, he obtained his realtor license at age 50. He participated on several boards and held various executive positions. He retired from the realty business at 78 years of age. It was very difficult to observe and support my Mom and Dad through the challenges they faced. For example, upon completion of a brief test of memory and related functioning and inquiring how he did, he told me “they tried to make me look stupid and they were successful!” There are no words to explain how much hearing this hurt. Later as my mom was able to discuss Dad’s diagnosis, she said to me, “how can this happen to such a smart man.”
My Mom and Dad went into care together and she always took care of him. At times, this took a toll on my Mom, as she was embarrassed at how he often acted. For example, while the staff were providing care to change his undergarments, she heard Dad say, “fine, just go ahead and rape me!” Although my Dad was fortunate to have access to good care in many situations, there were situations where the care provided by the healthcare team and us, as his family and caregivers, could have been improved to better his experiences.
For these reasons, I am pleased to participate and support the #SeePainMoreClearly project with the intention to improve the experiences of other individuals and families who are and will experience dementia.
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How You Can Help?
Would you like to share your thoughts on our See Pain More Clearly initiative and the use of social media to mobilize knowledge about pain in dementia?
We are looking for participants to participate in a study to evaluate the effectiveness of the #seepainmoreclearly social media initiative to mobilize knowledge about pain in dementia.