In my #BanBPSD for #WAM2018 blog series, I am posting a comment received after an earlier blog in this series; often it is a comments like this that motivates me to keep writing and advocating for change.
My blog today is short, but hopefully makes sense.
Jeff’s comments kept me awake, and in tears for most of the flight home from Taipei on Sunday night!
“At a loss to verbalise my thoughts.
After following your blog for many years and really understanding what you are saying, I feel a sense of guilt in having followed the advice of the professionals. I effectively lost my partner on day one of the treatment, and my sons lost their mother. They have both commented as such.
I hope you keep battering away at this.”
- I cried for ages, with a deeper than usual understanding of the absolute tragedy of our times for people with dementia, which in part, is due to BPSD.
- I cried for Jeff.
- I cried for his sons.
- I cried for his wife.
- I also cried with relief.
- Yes, I even cried with relief, perhaps because I’m a stubborn old chook!
- I cried with relief for ultimately refusing to accept the Prescribed Disengagement® so quickly dished out to me, and, which is still being prescribed to most people receiving a diagnosis of dementia today.
- I cried with relief that I didn’t follow through on my initial thoughts to just give up (or give in, to dementia), when told there was no hope for a future.
- I cried with relief for my husband and sons I did not give up on life; we have all learned to love more deeply.
- Finally, I cried with relief that I found ways to continue to live positively, productively, with a good quality of life at least some of the time, in spite of such lousy advice!
For Jeff, and his wife and sons, and so many others like them, I will continue my crusade to BanBPSD. If everyone is to Live Beyond Dementia, this is one of the pieces of the puzzle that really needs rethinking.
Reminder to tune into DAI’s #Hello my name is series of #WAM2018 blogs; please also consider making a donation to DAI, so that DAI can continue to support members like Julie.