In reply to a post by Kate Swaffer:
http://kateswaffer.com/2016/01/30/co-dependence-and-dementia/ (opens in a second window.)
Kate, your comment says it all: "A healthy relationship is a partnership, an alliance, not some game with winners and losers, and when the interaction in a relationship becomes a power struggle, due in part to the fact that care partners and others are given all the power over us, and people with dementia are Prescribed Disengagement®, there can be no winners."
Kate, I feel that the problem with Dementia/ Alzheimer's itself is that in the end there are no winners, only people trying to live their lives as well as possible with a disease that even kindly can only be called insidious!
There will always be 1) people trying to help and succeeding, 2) people trying to help but ending up hurting, 3) people trying to hurt and succeeding. With Alzheimer's Caregiving Partners, whether family or professional; we see self-serving people and altruistic people, giving people and taking people, informed helpers and uninformed helpers, quality of care people and bottom line financial budget people.
Perhaps closer study and research; using comparisons of how people diagnosed with other life threatening and life ending illnesses are treated and supported by family, friends, professionals, agencies, governments, etc; could help clarify the dementia caregiving partner model and create one which would be more equal to and more appropriate for the nature of supporting people with Dementia/ Alzheimer's!
I believe that contributing factors to this care giving partnership thinking are more complex than the Dementia itself. In healthy, functional relationships, living life can be easier. In unhealthy, dysfunctional relationships, living life can be harder. Either way life itself can be at the same time a "fight" right beside a "dance" and the Dementia complicates it. This is true not only for love relationships but also family and health care organizations and governmental agencies. Functional vs non-functional!
Finally, with Dementia/ Alzheimer's, eventually the person diagnosed will need to have someone make all of the decisions about meeting their wishes, care, treatment. Eventually the person with Dementia/ Alzheimer's will not be able to make known their needs, wishes, discomforts, pains, desires, etc.
Perhaps the best way to deal with this is for the Caregiving team to try to talk about or put into writing, the details of how the Caregiving Partnership Model might look for the person needing such. Attempting to clarify how they want to be dealt with when the time comes that they are no longer able to coherently deal with life's major as well as day to day decisions can solve a lot of decision problems for all members of the Caregiving Team. Often families and/or the people with Dementia are not emotionally able or willing to be open and honest about the disease and their wishes for the future.
Hopefully in time, with more awareness, the "RIGHT" people and ideas and approaches will win out. I think the best way to continue aiming in the right direction is: "NOTHING ABOUT US, WITHOUT US!"
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