Home Visit from the Palliative Care Nurse


Mom reading David Copperfield to Adele, the dog

The good news is that Mom's health and medical status have improved. The Nurse thinks Mom will be moved to Long Term Care status when a case manager becomes available. At present we do not know what this change will mean, or what additional resources it will take from the family to take care of Mom at home.

I mentioned to Nurse that my estimate is that Mom is given caregiving attention every 30 minutes during waking hours - whether it is adjusting her position, her clothing / comforters, beverages, snacks, meals, playing games, talking, managing bowel movements, administering medications, would dressing, personal care, etc.

Nurse replied that a recent study of Long Term Care time spent caregiving individual patients was an average of 2 hours in a 24 hour cycle (or 5 minutes per hour). In this scenario, Mom would not have the freedom to sleep, eat and get dressed as she wants, she would have to conform to the institutional schedule. In addition, any care outside of the routine schedule would need to be called by pressing the call button to signal for assistance. This requirement would be beyond Mom's capability - to use the call button. 

If I needed to bolster my resolve to survive and thrive in this caregiving mission, Nurse could not have given me more motivating information. Combined with news stories of fatalities in care homes as a result of wound management neglect, poor hygiene and sanitation for frail elders, including soiled pants and extremely painful rashes, it is unthinkable that we would do anything but make this work.

The difficult reality is that there are not adequate supports in place right now to support our caregiving mission, in particular to offset the unpaid time and effort of providing caregiving service. Over time, the resources of the caregiver are depleted because they are exerting an unsustainable effort. Concurrently, the needs of the care recipient increase over time, thus exacerbating the toll on caregiving resources. 

The length of time caregiving depletes caregiver resources at an increasing rate of draw down as the care recipient's needs increase over time. However, the length of time caregiving and the life span of the care recipient are directly correlated to the quality of care. A lower quality of care will decrease the timespan for caregiving because the health and well-being of the care recipient will be negatively impacted, resulting in a shorter life span for the care recipient. For example, Mom quit smoking because we took the trouble and insisted she take this step. In an institutional setting, she would have been allowed to continue smoking and there is no doubt her life span would have been shortened.

This is the conundrum of caregiving - we will not shirk our responsibility to provide the best quality of life for our loved one, even as that quality of care extends the timeline of our caregiving and increases our own socio-economic vulnerability.

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