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!"
While I try to distance myself from giving advice on dealing with Alzheimer's, I frequently see a post where I think I might shed a little light, or not, by giving examples from my own experience.
ReplyDeleteOne of the sisters' son was sharply criticized for finding his mother a place at a well-run facility near his home where he could visit daily, because another sister wanted her near herself (60 miles away) where she could visit even though she'd not done much visiting when Sister lived alone almost within walking distance until dementia made it necessary for changes.
As criticisms grew, other siblings commenced to take his part, assuring him that whatever decisions he made, two of us had his back.
Another of our siblings' spouse was quite open with him about his disease and discussed with family what she was doing and what she planned to do. One of the things she did was to water his gin when his drinking got out of hand added to dementia. Her plan was this: "When you cannot call my name, I'll find placement for you. Until then if you recognize me, I believe I can take care of you."
What she didn't anticipate was that one day he would fall and not walk ever again. He could still call her name and looked forward to her daily visits but she could no longer care for him at home. He believed himself to be in a motel --it was a pleasant place-- and did not ask to go home.
Another thing she'd not reckoned on was that one night as she drove home from visiting him, she had a stroke and an auto accident. After a brief recovery, she was still able to visit in the daytime.
As an old lady we once knew said of her philandering drunken sot of a husband, "Everybody knows what to do with the devil except them 'as got him." My own little cliche is, "Your best is good enough."
Excellent examples from your own experience. I think they both point to doing the best you can do. Unfortunately dealing with Alzheimer's is done on a person to person basis and people are subject to another disease ... called ... the Human Condition. Like the son getting grief when he made them with love and only had his mom's best interests in mind. Like the woman who watered down the gin and made a promise she was destined not to be able to keep. But her decisions for her husband's placement were done with love and his best interests in mind ... and she did her best to continue visiting him. Ah THE HUMAN CONDITION, Ah THE HUMAN CONDITION!
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