Writing about dementia

A blogging friend wrote to me privately on 6 June…

  • I stay away at times because I just find it very difficult to read about death a lot and all of the terrible down effects of Dementia. When I first started out at your inspiring blog way back when you were in a very different space. You were a much more fiery fighter and not feeling the effects of Dementia so much. I have watched your postings become heavier and heavier and your sadness has locked in place as this disease seems to be swallowing you up. It’s my nature to want to pick you up and help you get back in the fighting spirit, but what if you can’t?  I don’t want to be pushing positive stuff on you if in fact you just have to be sad on your journey. How you live this journey is totally up to you and with no judgement involved by me. I do not have Dementia, I am not suffering, so who am I to say anything. That part of me that loves you wants so much to shake you up and push back onto the positive train chugging its way through your life. It seems from experience with illness in others that when they gave in to the disease they were dealing with and allowed those days of sadness to mount up, they seemed to go down hill. The fight begins to lessen I guess. I so don’t want that to happen to you. I don’t know if what I am saying makes sense or if God forbid offends you. I hope not and if it does I am so sorry. I will always be here for you, I will continue to come by the blog but I may not always comment if the post is heavy and death oriented. It’s just too hard to take in a lot. I am so sorry you have lost three friends. I cannot imagine what that must be like, especially when they died of the very disease you are dealing with. We all deal with life in different ways and that includes death. I want to allow you to deal with the cross are having to bear in the way that feels right for you. If there is anything I can ever do for you please just email me. As I said, I am always here and I just wanted you to know I wasn’t commenting on your site as often because of some negative reason. Quite the contrary. I wish I were better at it but for now I hope you understand why I am not always there. Take care my dear friend and hang tight. Don’t let your sadness swallow you up! We’d miss you 😦 Sending you my love and hugs…

With her permission, I have published it here. None of it offended me, and some of it re-inspired me to fight harder. It shows the effects on others of my writing candidly about the down times in my life, the deep sadness of death, the grief and loss, and the negatives of living with a diagnosis of dementia. When I write about these times, I do so to share honestly the events and emotions I am feeling. Of course, the pages sometimes ooze with sadness, as I openly explore and express my feelings. And for those who have been following me since I started, it seems, it is now more obvious things are changing.

Thankfully though, I don’t feel desperately sad or distressed all of the time, I simply choose to share exactly how I feel, and when I am writing about the effects of dementia, it is important to be real, to be true to myself. By the time I publish some blogs, I am days or weeks away from the sadness, and don’t feel that way the day I post it, but still want to share it because it is part of my world. And as it is my blog, about my world, I feel it is important to. Exactly why I write is not so important, but I think I write partly to stay inspired, and mostly to let out my sadness and grief. It works brilliantly as therapy for me. Also, my blog has become my memory bank for the days I cannot recall what I was doing or how I was thinking.

I don’t write to evoke pity or even sympathy, even though sometimes it does. Interestingly, the people most likely to respond with hugs through words on my blog are strangers, apart from 3-4 very close friends who also contact me away from the blog. The effect of social networking has made face – face or phone – phone contact quite rare, almost a thing of the past. Recently I was going to close my Facebook account, and the one thing that stopped me is I would lose contact with so many people who I do like to be connected to, and this has virtually become the only way to ‘see’ them. That being said, I do miss seeing the many people who ‘tell’ me they are a friend.

As I continue to write about the good, the bad and the downright ugly days of dementia and dying, I will keep writing about the beautiful and inspiring things in my life and world too, of which there are many. Dementia has meant many things have changed negatively for us, but it has also been a gift, giving me a clarity I had not previously discovered, in spite of my disappearing world. Things are still changing slowly and my dear husband could write about them as I think he sees them more than me now. Insight is still here most of the time, but ever so gently fading…

12 thoughts on “Writing about dementia

  1. Kate – I repeat what Jodi said above. If you were to edit or censor anything you’d be lying about you and your life. And I don’t think this is the type of person that you are.

    Thanks for being so honest. It’s time everyone learnt what it’s like to live with dementia and not sugar-coat it.

  2. Kate, I have been sitting beside you on the Dementia train for a couple of years now. Sometimes I talk to you, like now, but usually I just look out the window and try to see the picture you are creating with your words. Unlike you, I can get off this train at any time, but I might just sit here for a while yet, and watch the scenes you paint on the windows. Jeff

  3. Blessings dear one 🙂 May today be one of the better days when you can wear a smile. Take care and know you are loved Kate! VK

  4. Dear Kate – this is your journey and it is your readers prerogative to join you on the journey or get off on the way…You are losing “parts of your life” on a daily basis and have the right to mourn your losses. Your blog is where you can truly express yourself. You write so beautifully, and I love your blog. I am sad for your journey but will remain here for as long as it takes. Please do not stop blogging. I too lost many readers as Vic’s journey progressed. They could not handle the sadness of her dying. Now I have lost more readers because my grief is wearing them down. Family have become angry with me for blogging. But, the journey is mine…The blog is mine. The choice is theirs.
    And if you forget who people are one day – I hope they will be kind and nice enough to like as a new friend.
    I loved my dad through out the stages of his Alzheimers. I loved every dimension of his being. He once said to me “I don’t know who you are but you must love me very much. I see it in your eyes.” My prayer for you is that you will continue to recognise the love in peoples eyes…
    Lots of hugs and much love!

    • Brilliant… “The blog is mine. The choice is theirs.” so true, and I thank you for reminding me of this. Losing readers is not the problem, losing our loved ones (or ourselves) is really the major issue… stay strong, and keep blogging x

  5. Your honesty gives us insight into what it’s like to live with this horrible disease.
    I applaude you as I imagine somedays you must find this very dfficult.

    • and the one thing you must always remember is, if I forget who you are, or forget I love you, please remember the essence of who I am will still always love you xoxoxox

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