lib·er·a·tion (l b -r sh n). n.
1. The act of liberating or the state of being liberated.
2. The act or process of trying to achieve equal rights and status.
My computer and internet access are more important to me than just staying connected. This connectedness helps to make up for the lost friendships, the loss of real people visiting me. But also, it is a ‘safe’, noise free, socialising environment. It is a place where I don’t have to worry about paddling so hard, a place where I can take as much time as I need to work things out, and where I don’t feel embarrassed when I can’t remember, or get out, the right words.
It is a place where I feel a sense of equal rights and status, a space for dementia liberation, and I do feel fearful of the time I may not be able to use my trusty little laptop or iPad. It will throw me more completely into my disappearing world, into the downward spiral of dementia. What will I do with my free time, how will I socialise or feel connected, who will visit me then? These are very daunting questions, for which I can find no suitable answers.
Society in general is not set up to cater for people with dementia. Community, respite and residential care often talks rather than walks the talk of person centred care. Whilst many have the will, they do not have the funding to provide it, and services remain institutionalised because of this. The stigma and discrimination in our society encourages and exacerbates the discrimination, isolation and loneliness.
Many of my real-time friends say they will visit, but mostly, they don’t; they are too busy (or rather, not willing to make the time), or they are too afraid of the changes brought on by dementia. My dear husband will be left with the load, and whilst he is willing, he too will become stigmatised, isolated and lonely; it is a very daunting future for us both. I’ll just have to encourage him to write my blogs for me, and to keep he conversations going with you, my wonderful global friends!
Ah my friend….Take a deep breath and then exhale…You have yet to reconnect after your journey completely. Do not lose sight of the new world that is being birthed at this very moment. The old paradigm does not care for PWD but the new world is a very different loving and caring place to be. Find joy if you can in the fact it is soon to emerge and our lives will be very different. I know it is not easy but keep the faith and remember the circumstances you describe and dread are of the old world 🙂 Much love….VK
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I love it that you have enough faith for us both when mine dips! xo
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Kate, I hope your creative writing and poetry never leave you. When I think of you, I feel sorry for what life is throwing at you, but I am amazing at the the grace you’re accepting it all with.
Keep on living your life as best you can, no-one can ever do more than that…
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I think the poetry will continue in some way… perhaps it will evolve into performance with mime!! Thanks for your support, one poet to another.
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….Dear Kate……you have just had an exhausting trip overseas……and you are tired…..we all love you , …..
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Thank you Tony, and of course, I love you all too…
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Heroic wonderful Kate,
Knowing the little snippets of you – I feel certain you will find ever increasing simplified ways to communicate about your experience to us beyond words. Do you paint, use pastels or anything else besides your knitting? (forgive me if you have told us you do my own memory is not so clear sometimes these days) There are also beautiful beautiful BEAUTIFUL adult coloring books (mosaics, butterflies, sacred symbols, mandalas etc.) I use them myself for meditative soothing and just to play with color.
I hope you will not give in to loneliness. It is true, once people move beyond their initial response they do tend to forget out of ‘business’. It has been my experience that it is more that they do not want to be reminded of their own vulnerability or mortality. All the more reason to keep reaching out for as long as you are able.
You continue to be an inspiration and mentor to us all who will follow you on the path.
May you continue to be blessed with an ability to stay connected.
with much love and light,
Beth
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Dear blessedbeth, Your comments gave me a giggle… I’ve not told mentioned this before, but I really dislike painting and ‘art’, but love handiwork like knitting and crochet, or cooking, all artistic too of course. As well as creative writing and poetry! Thank you for your spectacular and generous following of my journey. With love and hope, always.
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Darling Kate,
I’m sometimes afraid of inflicting myself on you as I know how tired you get and it’s difficult for most people to say ‘bugger off now dear’, even though it’s the best (in my opinion) way to signal ‘I need to rest/read/listen to music/talk to the cats/give my brain a break.’ At the same time, I can imagine the enveloping isolation that’s come to mark your life — it’s something that all of us, except anchorites, fear. So, can we meet for a coffee one day soon?
Much love,
Denny xoxoxoxox
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Dearest Denny, you are one of the precious handful of real-time friends (Annie, Fabs, KB, Irene) who do visit regularly. Thank you,I am Blessed to have you all in my life. And for now, I am still good at saying, ‘I’m too tired, busy or just want to read, etc’. Last time you were here, you were also very good at noticing I was tiring and gently finding a reason to leave. I also have some real-time friends who live interstate, and we catch up when we can, and I feel very lucky to have so many friends as I know of others who have virtually no-one to visit them. So anytime you are free, let me know! xox
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