Written by Bob Kelly AIA, IDSA
I am writing this, as our family and more specifically, my wife approach the twenty-fourth month of care for my mother-in-law. As a designer, I concluded months ago that the issue of care of a loved one, by itself, is a complex one requiring multiple strategies and much self education. What I did not fully appreciate until recent months was the gradual but profound effect it was exerting on our family order and relationships.
As it turns out, there is a name for this. It is called Caregiving Trajectory. This term and a lot of additional information is contained in document I found online entitle, “3 Family Caregiving Roles and Impacts | Families Caring for an Aging America | The National Academies Press, https://www.nap.edu/read/23606/chapter/5#74."
Caregiving trajectory is exactly as it sounds. It describes a process of caregiving that starts small and somewhat innocently. In our case it probably began several years before we received the diagnosis - Alzheimer’s. But, over time and in an almost imperceivable manner with the advance of the disease, the duties of caregiving mount and become ever more time consuming and emotionally challenging to the primary caregiver, my wife. Combine this case of Caregiving Trajectory to her responsibilities for twenty-six first graders each day as an educator and with no formalized plan to manage the increased responsibilities of care giving, well you get the idea.
It seems as though every thread of our family fabric has been stressed. For families with fabric that is already somewhat frayed, well? The unfortunate part of this story is that while the advancement on the disease is not within our control, dealing with the impact of its trajectory on everyone, is.
With Alzheimer’s, unlike many other diseases, the day the diagnosis is made, sadly, the outcome is also determined. After dealing with the emotional impact of this reality as a family, the next logical step should be to start designing a Caregiving Trajectory plan for the family. This plan would naturally start small but would contain pre-planned commitments from each family member to join in the care effort as the trajectory of the disease changes. This way a caregiving team is gradually assembled over time. Just as, my wife, not me is far better suited to deal with her mother on a more intimate scale, there are skills that I have and that each of her siblings have that at the appropriated pre-planned time would go into action. This pre-planned strategy would allow her to focus her attention mostly on caring for her mother’s more intimate needs not dealing with finances, agencies, insurance companies and the like.
From our current vantage point, it is clear that a well thought out yet adaptable Caregiving Trajectory Plan from day one could have minimized the potential for misunderstandings and in particular mounting stress on my wife. A well planned Caregiving Trajectory Plan should be a roadmap for care capable of adaptation but designed to spread responsibilities, not stack them, as circumstances and needs change with the progression of this devastating disease.
What is a provocation or insight that might inspire others during this challenge?
Families plan for a wide variety of life events such as births, education, marriage, financial surprises, retirements and even death. How might we develop similar advanced planning strategies for long-term family caregiving?
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