Yesterday we tackled the task of removing Mom's personal possessions from her room. I did not realize how hard it would be. Luckily my son, Knoll, and my sister, Holly, were here to help with the work. The day before, I had a good day. Good energy, able to set myself a modest goal and work throughout the day to get it done. Yesterday my energy was very low. I just felt tired, drained, out of gas. Every question took a great effort to answer. Every decision felt heavy and hard. Knoll started by sorting the drawers from Mom's desk. Every drawer had an assortment of different things in it, they were all a mix. Knoll was able to set up a collection of containers and figure out categories for what should go where. The last drawer on the lower right was physically heavy to open. This drawer held all Mom's hand weights. She loved to get her exercise lifting these weights while she sat in her chair or lay on her bed. She had extraordinary arm strength and it came in handy as she...
My life with Mom is constrained to activities around home. It is ok for me to go for a 20 minute walk with the dog off the property and leave Mom in her chair or on her bed, but I start to feel uneasy for any longer period than that without knowing someone is looking in on her and making sure she has what she needs. In November, 2021, Mom was put on the palliative care registry and we organized ourselves to 'let nature take its course' on a six month timeline. Had we ever done this before? No. Did we know what to expect? No. We set aside our regular life routines of planning trips to visit grandchildren, or planning renovations, or planning to rescue a second dog, or install a new chicken coop. We put our lives on hold to organize and manage for Mom's needs, thinking this was a short term, acute situation that needed our full attention. At the end of the first six month period, we consulted with the Palliative Care nurse and extended the palliative care registration. Mom ...
These video clips are demonstrations of the concept for arts-based narrative inquiry as a documentary process capturing contemporaneous notes depicting the lived experience of family caregiving. Mom was up early this morning - check timecode moment 3:15 Preparing for Palliative Care Nurse visit - check timecode 220 Consequences - link to John in Halifax (caregiving wife w/ dementia) - check timecode 450
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