A Caregiver's Story #1

Updated: Oct 1, 2020

Our parents both suffered with Alzheimer’s disease and passed away in 2018.

As a retired health professional, and their primary caregiver, my biggest fear was that Mom or Dad would experience pain that they could not tell us about that would not be identified, thus causing them great distress.

These considerations were top of mind for our family:

Effective pain management is considered a human right by the Canadian Pain Society and many national/international organizations.
The likelihood of experiencing pain increases with age and greatly reduces quality of life for affected seniors.
This trend is particularly troublesome for those with Dementia as their pain may not be recognized or adequately treated as they become less able to communicate.

This was the case for our mother in the weeks after she fractured her pelvis after a fall in 2017.

She spent the first 10 days post injury in an acute care hospital where staff were very busy and did not consistently monitor or manage her pain. This was distressing as she could not tell us when her pain was too much for her. My sister and I recognized when her pain was increasing and we alerted staff. However, we were unable to be with her at all times and as a result, pain medications were often not given when needed - thus causing much suffering for her and distress for us.

The consistent use of validated pain assessment methods would have significantly reduced the burden on my sister and I who repeatedly requested medication, positioning and other pain management techniques. This way, our voices would not have been “cries in the dark” but would have been supported by pain evaluation (and management) protocols followed by the entire healthcare team.

Here is an excerpt of my sister’s experience during this time:

“In acute care setting we knew our Mother better than any of the staff and wanted to be part of the health care team. We tried to advocate for her as she was unable to communicate on any level with staff. Our efforts to do so were met with resistance and we felt that our suggestions were ignored. This seemed unfair as we were very diplomatic and calm in our conversations with staff.

For example, when our Mom was crying out in pain, I asked for her (as needed or PRN) pain medication before shift change at 6:30 PM, I then asked a couple more times and she still had not had her medication by 10 PM. I refused to go home for the night until they gave her pain meds and they finally did this at 10:30 PM. It was desperately sad to watch our mother needlessly suffer during this time. On one occasion the nursing team indicated that they would provide Mom with pain medication every four hours around the clock but another nursing team indicated they would not give her medication to her unless she herself asked for this. This situation seemed ridiculous to us as she was unable to verbalize her pain or her obvious need for medication.”

Once our Mother was back in long term care, staff worked closely with us to keep her comfortable. However, even staff members who knew our mother well sometimes missed cues that her pain levels were increasing, and she certainly suffered during these times.

This is why implementing effective pain evaluation and management tools for dementia patients in all settings is so important. This approach would bring peace of mind to families and caregivers working hard to prevent unnecessary suffering for these vulnerable patients.

We thank Thomas and the #SeePainMoreClearly team for working to lessen the burden of unidentified pain in vulnerable individuals with Dementia. We will help in whatever we can to share this valuable research information as widely as possible to improve the lives of countless Canadian patients and their families.

Our team's response: Thank-you for your kind words, courage and commitment.