Joined: 5/20/2014
Posts: 4408
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Always one to champion equal rights and dementia awareness, Kate Swaffer, the world would be the poorer without you! Thank you for offering us this thought provoking post.
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Joined: 9/12/2013
Posts: 3608
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Llee - she is getting hostile comments on her blog pages. People insisting she does not know what she is talking about and referring to someone who died and how horrible it was. People saying she must take down her blog for this crazy talk. The dying process can be difficult. That is why we call Hospice for help and medications if the going gets rough. I spent every night for 10 nights with my Dad as he was dying. If I had not been there he would have been choking and frightened - he could not push a button for a nurse to come help him. This is about changing the whole culture of dementia and dying as a natural process that can be done with intelligence and love. By the way there are photo montages of people smiling right up to the end. People still alive and being treated as such. The burden falls upon our own shoulders to educate who we can, the willing, so we can be part of life as long as possible. Dag nab it. If any of those people think that dementia demands a horror show with all the pity and sympathy going to caregivers, well wait until their exit comes around. I have been with many people as they died and none of them were allowed to suffer. It was in fact profound and in its way beautiful. Even with dementia we have some responsibility to create the support we need. and the right to change if things feel different later. so far, for all living things, mortality is still running at 100%
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Joined: 5/20/2014
Posts: 4408
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There is some controversy and raw emotions surrounding someone who chose to end her life in the dementia circle of friends. Perhaps all the negative scenarios and the "horror shows" predicted for us is what sets us up to be FEARFUL of living with dementia? Kate was unjustly picked on and some can't handle the truth. I see this whole affair of living and living well with dementia is going to take a lot of courage!
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Joined: 9/12/2013
Posts: 3608
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when truth is spoken it no longer matters who gets mad about it. The reply I have for people who say things like "You poor thing," is to say "I wonder what makes you say that?" and smile and look them in the eyes. One woman who comes to my tiny church once a month will sometimes pet my head when I am praying being for service and making noises like you would for a sick dog. so far I keep my head down and after service speak to her in the clearest least halting voice I can with a big smile. Kate can handle this stuff, but I am sure she appreciates when other people back her up on her own page in the comments section.
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