DRT: Yield to communication priorities; PWD “suffering” terminology


Source: DRT: Yield to communication priorities; PWD “suffering” terminology

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3 thoughts on “DRT: Yield to communication priorities; PWD “suffering” terminology

  1. I don’t think anyone is suggesting (or at least I hope that they are not) that individual people cannot say that they suffer, or are suffering, or characterize themselves that way. We don’t refer to people with cancer as “cancer suffers” even though just the act of being diagnosed with cancer entails some kind of suffering. Not referring to people with cancer as “cancer suffers” has NOT diminished in any way the public perception that people with cancer are suffering.

    But, on the flip side, if a stranger walks up to me or greets me, as a “sufferer” – what does that make me? Should I see myself that way? Should I be trapped and diminished by that title given to me by others who don’t know me? Should the concept that I should inherently “suffer” ever be given to me? Should I be told, on diagnosis (by doctor or others) that I will “suffer”? And, if I am, *how* does that change how I see myself, my diagnosis, and my future? Is that *what* we want to hand people?

    Also, if suffering is inherent in dementia, like it is in cancer…then who feels they have to “prove” they are suffering to others? If you are suffering, you are suffering…and it doesn’t matter what others think.

    And, do we HAVE TO suffer? Who said that, and *why* did we ever believe them? Isn’t suffering just a matter of perspective? And in dementia, maybe some of us need other’s help to change our perspective? Maybe we are inherently too reliant on other’s perspectives…that we are a burden, that we are suffering, and sufferable, that we are the cause of everyone’s misery…shame on us for getting dementia…right??

    I totally think suffering (aside from depression, or perspective), is the complete and total result of caregiver failure. If I am suffering in my final days, my caregivers aren’t doing it right. And OMG if they bring suffering to the holidays…because they cannot wait to grieve me…gag me with a spoon.

    We are all, of course, entitled to our opinions. I don’t see characterizing us as “having dementia” in any way diminishes our experience of it. Whereas, to characterize us as suffering – alters, negatively, our experience and our caregivers sights at what is possible, and sort of locks us into that (very yukky, imo) destiny. Not a fate I want for myself.

    Peace to all.

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