Farewell 2017

Farewell 2017: the highs & lows

As we come to the end of another busy year, I’ve been pondering on how things have changed over the last few years, and especially in 2017. Today is also the last day of my role as the SA 2017 Australian Of The Year, and whilst it should have been one of the proudest years of my life, it was also one of the toughest. But I made it, and it has made me so much stronger, as well as ensuring I tidied up my contacts list, which also meant blocking a number of people who were not at all kind to me, although to my face I have no doubt would still pretend to be ‘friends’.

Yesterday, I was inspired to write the quote featured here, and it was indeed enlightening also going through the process. My life has been so much gentler on my soul since removing contact with the group who lied about me. There is much to write about living with dementia, and I read many other blogs, in an effort to continue to be reminded that we all experience it differently. Yesterday, I replied privately to a newer online friend Minna’s blog, part of which am sharing here as it felt relevant to, and I have her permission to share as well:

I’ve cried a lot reading this raw, honest, and beautiful blog about your struggles, your loneliness, your fear and the reality of your dementia. You looked and sounded the same to me as you did the last time we were both in the support group, although a little sadder, yet I also know from personal experience how my own changes are taking place, yet no one sees them. 
In it’s own strange way, it is both devastating and at the same time also positive, at least for me. 
That others rarely notice, preserves my dignity. 
That others rarely notice, is also deeply painful and strangely alienating.
How do we have both?
 
I have no answers, other than I wish we lived closer and could meet up in person over coffee! 
 
As my husband works, I’m alone all day when home, and am deeply lonely, in spite of my dear husband being truly amazing. In itself, that is also very odd to me, but perhaps it is the sharing of the experience of having dementia we need to talk about, that of course he cannot fully comprehend?

Assets… not deficits

Only this week I had a phone meeting with someone (can’t now remember who), who said to me that many researchers and doctors still say to each other they believe ‘our’ diagnosing doctors must have been wrong. How insulting to the highly qualified medical specialists around the world, and how ignorant to still believe it is not possible to live positively with dementia. Anyway, it is not easy to change others, especially those who are ignorant, or who choose not to look outside of their boxes; all we can do is change ourselves, and our reactions to those with such closed minds. But, this kind of bullying is harmful, and cruel.

In 2012, I wrote a blog titled Impairment in view, and the worrying thing about re-reading it was the realisation that some things are worse. The good thing is that by focusing on my strengths and accessing disAbility supports to continue functioning in the areas that are important to me, I have remained functional. Even my specialists are now interested in how I have ‘managed’ dementia, and I can see in my own life, the real power of neuroplasticity and the pathway I have self prescribed. Christine Bryden, an Australian woman also living with dementia (diagnosed approximately 23 years ago), recently graduated for her Doctorate, proving very clearly that by focusing on what we can do, many people with dementia can still live exceptional lives.

Although I was paddling hard in 2012, and thinking of being positive in spite of dementia, I was still, back then, thinking too much about my deficits, or at least, others were forcing me to, to ‘prove’ or ‘show publicly’ some of my deficits. Having had to formally prove I was not a medical fraud in December 2017, it remains an issue that publicly living positively with dementia ensures people don’t believe you have it. Sometimes, even others with dementia will question you. Hopefully, in my next life, that will have changed, and like cancer, when you do well, everyone will cheer us on.

Whilst there are more things I cannot do as well as I used to (if at all), there are still many things I can do, and for now, I must focus on them to maintain my sense of self and purpose. Today, it felt helpful emotionally to make a list of some of the things I am still able to do:

  • Being kind to others
  • Thinking
  • Being more creative than I ever was before dementia (I was once told I was as creative as a brick!)
  • Typing (thank goodness for spell check!), therefore, blogging, writing and publishing
  • Speaking, although not as fluently as it used to be
  • Reading, although more slowly, and with more difficulty, requiring more disability support
  • Cooking, although not to the level I was once capable of, but with chilli, everything is bearable to eat!
  • Being part of a great team who runs DAI
  • Writing poetry

Welcome 2018: Staying focused on being positive

I am more in love with my dear husband (DH) than I was when we married, which will be 20 years in 2018, and have a wonderful relationship with our two sons, and a number of very close friends who I still get to meet in person occasionally,  although never often enough.

So for 2018, along with being much more focused on Living Beyond Dementia™ which will include more stringently adhering to the Bredesen Protocol, I will be even more focused on my assets, and where possible, will ignore or find support for my cognitive and physical disabilities. People outside of DAI have also set up support groups for anyone wanting to know more about reversing dementia, and as we start to think about dementia as a chronic illness, and the risk reduction evidence is growing, lifestyle changes and rehabilitation are the closest thing to HOPE that I can see in the near future. I intend to stay focused on being positive!

Finally, I will also remind myself to accept who are my ‘real’ close family and friends, through the more positive process of imagining life without them.

33 thoughts on “Farewell 2017

  1. Pingback: Thanks Dementia: a life changing experience |

  2. Pingback: 2018 and beyond… |

  3. Thanks for your thoughts Kate as always. I’m just finishing a book by Tim Winton ‘The boy behind the curtain’ and a chapter in it called stones for bread discussing our fear of strangers particularly those who are arrive on our shores by boat. This has me thinking with disgust and anger about some of the people who have crossed your path Kate and felt it was their right to make comments about your diagnosis. Winton in this chapter talks about human fear of those who are different to what society sees and considers to be the norm. The compulsion some in society feel to only focus on a persons deficits and not work to discover and embrace their strengths and then wonder why people who live with dementia feel further isolated and alone. Tim Winton writes about so called ‘boat people’ “Until recently we thought it was low and cowardly to avert our gaze from someone in need, to turn our face from them as though they didn’t exist.” In my experience with my dear mum this also rings true for people living with dementia. Only when we walk in others shoes can we develop an understanding of how a diagnosis of dementia impacts lives. Thank you Kate for continuing to share your thoughts so bravely to endeavouring to give us who are willing to listen some insight and opportunity to learn from you. You continue to inspire me to strive to give my mum back ‘her face and her humanity, not to avert my gaze’ and hide her away she deserves to shine. Much love and gratitude to you K, Vanessa

    • Thanks Vanessa, for your friendship and support. Your outrage actually helps my soul, so I am also grateful for that. Most of all, I love it that our meeting has taken place, and that I “inspire me [you] to strive to give my mum back ‘her face and her humanity, not to avert my gaze’ and hide her away she deserves to shine.” Lots of love and hugs xx

  4. Beautiful blog post, Kate {hug}. I’m relieved that you don’t have the pressure that comes from being SA AOTY – now it’s only all the other positions that you hold! Hope you can slow down a bit in 2018 {another hug!}

    Can you tell me more about this sentence – “People outside of DAI have also set up support groups for anyone wanting to know more about reversing dementia”. Is there a link anywhere? can you send me a private email? Thanks Kate 🙂

  5. Happy new year Kate-i hope you have a wonderful and prosperous 2018 and do amazing things-sooo looking forward to following you and Minna’s blog this year and keeping touch with you both. I am so sad to here that there were many people unkind and cruel to you in 2017-hopefully no one is mean to you this year-and a good idea to block them from your contacts-i blocked one of my Dads friends from accessing my facebook as he made some silly remarks about my profile pic so i thought no use this going on just block him. Minna’s quote is soo true yet sooo sad. I hope more people cheer you on Kate-it’s so sad some people don’t cheer you on but i certainly do and my support is with you-i just want to meet you! Your a star Kate and everything you do is AMAZING-i could’nt do it BETTER myself. I am sooo thrilled you have a wonderful and even better relationship with your Husband and Sons and i’m sure you will have many many many more fabulous and memorable times with them again and so delighted you still see lots of your “old” friends-i am sooo blessed i still see some of my friends who are at different schools although as you said not enough but enjoy every moment with them-old friends are precious! Take care, best wishes, much love, have a wonderful 2018 and enjoy everyone around you and hope we meet up in NZ this year if your in NZ and enjoy some socialisng(i hope)with friends and family. I am looking forward to catching up with 4 friends this week(3 at different schools, 1 at same school)but catching up with any friend is fun!Lots of love xxx

      • Thanks Kate-i will have lots of fun-always awesome catching up with friends:)Your most welcome for the support and friendship-enjoy communicating here with you-just want to meet you if your in NZ-specifically Auckland:)

  6. Dear Kate

    You don’t know me, but I have been following your story for some time now, and have the greatest admiration for your courage in writing it.

    Today you have reminded me of the intense sadness and loneliness being experienced all around this big beautiful country of ours, and I thank you.

    It has brought home the message that we need to care for and about each other on a much deeper level than we do. It has reminded me that the two-hour journeys I make to visit my 90 year old mother who lives alone should never be a chore, and are so necessary to her well-being.

    Again I thank you.

    And as we all face our own personal challenges, I am reminded again of the mountain you and others are climbing

    May 2018 be very kind to you.

    Jenny Jones (Tasmania)

  7. My very best wishes to you for 2018. May it be filled with the voices of those who love you, including us who will never know you “in person”. Ours is a warm and constant feeling for “pure you”, unencumbered with sight and sound. You are a treasure in my life! Your ethereal friend, Mary

  8. You’ve done it all Kate….Well not all I guess, there is surely a great deal more you have to offer the world and yourself! I’m so proud of you my friend…It is not at all easy learning to live with illness of any kind, you with D and I with anxiety disorder. But like you say, somehow we grow stronger and certainly better for it…Wishing you all the best in 2018 and beyond Kate….Hugs and love….VK ❤ ❤ ❤

  9. You are such an inspiration Kate, may 2018 bring you everything you wish for, stay strong, strength and love to you and your family.

  10. Meaning, purpose, intention, love, laughter, giving, ferocity and more are all components in healing the things that ail us, whatever those things might be. The stigma and negative narrative around ADRD do more harm to people who live with dementia that whatever it is that has caused their dementia. I know it with certainty. I think we we will meet in person in 2018. Won’t that be something? FireWorks!

  11. Well written blog my friend and well done on South Australian of the Year – Chris and I look forward to the lunch – actually we can’t wait to see you on Jan 19th much love, happiness and laughter (as well as more visits) in 2018 xxx

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