The gifts of dementia

The real gift of dementia: my imaginary friends

The real gift of dementia: my imaginary friends

Yesterday I wrote about walking in the shoes of a person with dementia, the less than glossy side of that particular coin. It seemed to resonate with some of you, and I’m always happy to share the darker side of this journey, or any part of my life for that matter!

I also have written about the more positive things, and this is an update of a previous dialogue between myself and another online friend from a blog called The Dementia Dialogue that we set up some time ago. Our continued dialogue stopped ages ago as things changed in our worlds, but looking back at some of our questions and answers is interesting.

It is not so hard to count my blessings, and see the positives or gifts of being diagnosed with dementia, even though there are days when I can be quite gloomy about the diagnosis, and even more so about the prognosis. To begin with, being given a diagnosis of younger onset dementia has reinforced a number of quotes I have used as my mantras for many years, which include:

  • You live until you die
  • Live every day as if it’s your last, just in case it is.
  • Being born is a death sentence!

Although many friendships with family members and friends have virtually dissolved, the friends and family who have stayed by my side are much closer to me now than before the diagnosis. This is because dementia has taught me to say openly how much I love and care for them, regardless of if they might initially feel a little ‘embarrassed’ by it. Not everyone easily copes with being told someone loves them, out loud!! I feel like we all have much deeper and more authentic relationships.

My husband and I are far more openly loving than we were before too, and some friends have actually said “we want some of what you’ve got!”

When I wrote the blog titled I love you many family and friends, who had never shared how much they loved me before then responded. It also encouraged them to be more open with their own family and friends, or to seek a deeper understanding with people in their own lives who had not shown them the love they yearned for. Writing that blog was a positive response to a deeper personal growth, because of the diagnosis of dementia.

On top of that, I have ‘met’ people who have become online friends, supportive of my journey, and through our conversations, I find new ways to either motivate myself, understand more than my side of the coin, or new ways to respond or behave. Some of you have even gone from being imaginary friends or possible axe murderers to ‘real’ friends, as pictured above! Thank you.

Another positive is I am now focused on my health as if it is the ‘Olympics training of my life’, and wonder why it has taken this diagnosis to make me more serious about it.

I’ve also become a regular blogger, a published poet and author, and an advocate and activist for improving things for people with dementia and their loved ones, and really feel like my effort is not only worthwhile, it is making a difference.

As we all strive to seek a deeper understanding of our contrary worlds of dementia, we will develop learning way beyond text books, and far outside of our individual experiences. This is not only learning for ourselves, but we are willingly baring our hearts and souls, sharing it with the global dementia community.

I do believe it is important to spend the great times now, and “I strive every moment of every day to develop a more welcoming approach to illness, disability, dementia and death, and to see them as the gifts that they have become, and every day I remind myself I am a person living with dementia, with the emphasis on LIVING.

11 thoughts on “The gifts of dementia

  1. Last Saturday morning when returning home from breakfast I witnessed first hand the pain if dementia. A block from our home the police helicopters, search and rescue volunteers, the community, an entire church were looking for an 83 year old woman who while sitting on a bench with her husband walked away while he briefly closed his eyes. She was found Sunday morning hiding under some shrubbery two miles down the river walk. It literally broke my heart.

  2. Hi Kate, not sure if you got my earlier comment.
    As you know the past year has been my Annus Horribillus and I’m told the worst is yet to come as the 1st Anniversary approaches.
    Alas, every cloud does have a Silver Lining – I met you, have had the privilege of hearing you speak in Hobart and sharing a meal with you and your family in Adelaide. I think of you daily; I’d love to replicate your beauty, your generosity,your enthusiasm and your eloquence. Thank you xx

    • Thank you dear Janet, it has been my great pleasure meeting you too. Stay strong my friend… Yes, grief in the very first year is often the toughest, but we, your friends and family, are with you all the way. Hugs xxx

  3. Hi Kate, as you know the year past has been my Annus Horribillus and I’m assured that the ‘worst’ is yet to come!
    Every cloud does indeed have a silver lining – because I meet you this year and have had the absolute pleasure of sharing a meal with your lovely family. I am honoured to call you a friend and so inspired by your generosity of spirit and word.

  4. Hi Kate, I have been reading your blogs with a great amount of interest, and your writing yesterday certainly hit home! I do not have dementia (yet!?), but my Mother has it in an advanced stage, and her Mother suffered with it too. I think it is a common belief that it is an inherited condition, and so I am desperate to find out what I can do from a health and mental point of view to delay the possible onset of the condition in myself. Please let me know if you have any ideas on a healthy diet and lifestyle that I can follow.

    • Thanks for following my blog and joining the conversation here Jane… I’m sorry to hear of your family history, but do know it is possible you may not necessarily get it, depending which one of the approximately 100 types/causes of dementia they had/have. Check out my blog which has a list of things I do; https://kateswaffer.com/2013/06/19/interventions-for-dementia/ but also things like eating healthy – lots of fresh fruit and vegetables, minimal bad fats, sugar salt – exercising regularly, keeping your weight at a healthy level – all the things my grandma told me to do -will help. Also, learning at a higher level, eg university or a language or a musical instrument are excvellent neuroplasticity exercise. I’m loath to suggest a specific program or other things like supplements – which I do take – but suggest you work out what works best for you. Nothing too drastic, just a really healthy physical and mental lifestyle. Take care…

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