Rethinking Dementia: Normal Human Responses #5

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.

15 thoughts on “Rethinking Dementia: Normal Human Responses #5

  1. Reblogged this on and commented:

    In my quest to find meaning in the last 10+ years, and to keep going, I’ve been reading a lot of my old blogs. This month, I have looked back mostly at the months of September, as it is Dementia Awareness Month. Thank you Jeff, once more for being there.


  2. Pingback: Failing to go with the flow |

  3. Pingback: Rethinking Dementia: Normal Human Responses #9 |

  4. I cry every single day for the needless suffering my mother endured for four years due to a system in which the medical model, and the mistaken belief in BPSD, remains deeply entrenched. I cry. And that’s okay. Those tears, and the sadness, are warranted. But, like you Kate, I don’t stop there. I use the sadness, and the anger to fuel my determination to collaborate with others to create change. That in turn gives meaning to Mom’s suffering, which had little to do with Alzheimer disease, and everything to do with a broken system.

    Liked by 1 person

  5. Thanks for your short but sweet blog today Kate. I like Jeff struggle with guilt firstly for putting my mum into care and secondly for being too trusting and blindly following the advice of the professionals, believing they had mums needs front and centre not their own. Education through study and your blog Kate has given me knowledge and confidence to ask more and more questions and want reasons for why medication is required. Pleased to report that this approach and an understanding doctor has resulted to mum having minimal meds and can to a point express her will and feeling rather than having them suppressed. Sometimes we have to make positive change one step at a time but any journey must start with a single step. If you read this Jeff, my heart goes out to you and kids I feel your pain and know that the rock of guilt is hard to carry and even harder to shake, hang in there. Cheers ness

    Liked by 1 person

    • My pleasure ness… we too still feel deep guilt for having put Pete’s Dad and my young friend with dementia into a nursing home, not sure how often you rationalise it to yourself that it ever goes away! So glad you are learning new ways. Ps sorry couldn’t take your calls today! It’s still being ‘one of those days’! X

      Liked by 1 person

  6. I think sadly Kate people will always hold resentment to a diagnosis that is out of their control over a loved one or themselves.

    The only control one can have would be to get tested genetically, protein or blood test in the brain, who knows, and then manage the diagnosis proactively like what you’re doing. Someone talking out of hurt shouldn’t detract from the bravery you’re showing each day.

    It was commented in the EJ Whitten match men are still reluctant to do their prostate check up each year as women are for breast cancer. For some reason male courage doesn’t resonate into really admirable behaviour and communication at times.

    If it were recommended for people in their 30s, 40s and 50s to manage a test for YOD and manage it to delay and avoid symptoms before onset then it would be a different ball game and attitude.


    • I’m unsure my online friend feels resentment… devastation more likely. Even genetic testing is not really having control, and will not show all dementias, though I’d go for early screening if it had been available. Most probably wouldn’t.

      Liked by 1 person

  7. Thank you for speaking up Kate. You are a wonderful person.

    My view is that medical interventions, such as psychiatric medications, are generally given with good intentions. Sometimes psychiatric medications are necessary to help lessen suffering. However I am of the certain view that psychiatric medications are grossly over-prescribed.

    In the case of those living with dementia why has the Pharmaceutical Industry been one of the primary “stakeholders” in “educating” the caring profession? “BPSD” was a term coined by industry rather than reality, let alone science. This is why I want to see “BPSD” go into the dustbin.

    Alas, at least in the UK, my profession continues to receive significant amounts of “education” from vested interests. This is why I will be retiring early from my career to do voluntary work.

    aye Peter

    Liked by 1 person

    • Dear Peter, you will be missed greatly by your patients… I feel sad the system is so flawed and ‘owned’ by the drug companies someone as compassionate as you feel the need to retire. Mind you, what fun, and how lucky are the organisations you’ll be supporting. It’s the same almost everywhere I suspect, as education is indeed funded by those with vested interests.

      I totally agree: “Sometimes psychiatric medications are necessary to help lessen suffering. However I am of the certain view that psychiatric medications are grossly over-prescribed.”

      This over prescribing has harmed, even killed many people with dementia. 😥

      So, when you retire, please visit us in Oz! Summer, a swimming pool, a lovely garden, and wineries and beaches not far away! X

      Liked by 1 person

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