Dementia is awkward to live with

Some time ago, I wrote ‘dementia is awkward to live with’. The thing that stands out in that phrase for me now is ‘to live with’, as I suspect this is a significant key to remaining positive. When first diagnosed, I was told to “give up work, give up study, and start living for the time I had left”, which I have regularly termed prescribed disengagement.

If I had taken this advice and stopped living a meaningful and engaged life, I often wonder would the symptoms of dementia have sped up, would my experience have been less positive, or would my ability to still achieve things that have true meaning to my existence have slowed down or come to a halt. Of course, this is only something I can speculate on, but I believe this would have happened.

Dr Bruce Lipton in his book, The Biology of Belief supports the role of belief as a factor in our ability to change health outcomes. In an overview about the book on his website, it says, “The implications of this research radically change our understanding of life. It shows that genes and DNA do not control our biology; that instead DNA is controlled by signals from outside the cell, including the energetic messages emanating from our positive and negative thoughts. Dr. Lipton’s profoundly hopeful synthesis of the latest and best research in cell biology and quantum physics is being hailed as a major breakthrough showing that our bodies can be changed as we retrain our thinking.”

I constantly review and work on retraining my thinking, in the belief I can change my cells. I continue to work on a neuroplasticity exercise program, in the belief I will create new pathways in my brain. Some say this is wishful thinking. I simply say, why not try these things, and to some extent they do seem to be working for me. Even so, the last few weeks, I have been finding the symptoms of dementia have been changing, and my paddling has needed to be a lot harder to keep afloat.

In the process of the struggle, I’ve accidentally missed publishing a blog on one day, and had a lot of difficulty writing new blogs. I’ve been giving myself a hard time, and spent too much time focussing on my deficits, rather than what I can still do, something I would ask people caring for someone with dementia not to do!! So tomorrow, I might write about what it is I can still do, and then get on with doing it!!!

Dementia is still awkward to live with, but living as well as I possibly can with the assets I still have is what I must do. “Good things come to those who work their asses off and never give up!”

9 thoughts on “Dementia is awkward to live with

  1. Dementia sure is awkward to live with, especially when you know you have got it, although it is probably not awkward for my Grandad as he doesn’t know he has it.

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  2. Hi Kate

    But don’t forget that stress is also bad for us – both physically and mentally. So try not to stress yourself about things that don’t work out or things that disappoint you etc etc.

    You say that

    “Good things come to those who work their asses off and never give up!”

    Maybe you should just concentrate on never giving up, but just don’t work your ass off ….. sure, try hard but not too hard – don’t stress yourself too much because your immune system may just start playing up. And we don’t want that.

    Sorry but I’m just saying it as an outsider ……. I don’t know what really is happening… at the end of the day you owe it to yourself and your family to put yourself first and not overwork yourself.

    PS – what does hubby say about my comment??

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    • My dear husband also supports my goals, and drive to keep ‘working my ass off’, as he knows what happens when I don’t! Also, I don’t get too stressed, and when I do, I go and meditate, then have a rest with a cat on my lap, a lovely way to destress.

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  3. Hi Kate, thankyou for sharing! Ive just moved my beautiful mum into High care secure dementia at Eldercare at Evanston. Its so difficult to see her struggle on those bad days but on the good days I believe its the most settled and happy Ive seen her in a long time. I would love with your permission to hear you talk at Eldercare in a couple of weeks?
    Mary Wadey x

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    • Hi Mary, Of course you can come along, I have just emailed Sue K to let her know. So sorry to hear about your Mum, but she is in good hands there, and it is great ot hear on her good days she feels settled. Pete’s dad hated being in high care, and it was truly a Blessing to see him go in May. See you soon. xox

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  4. I, for one, am glad you didn’t disengage. You’ve certainly added a lot of interesting and thought provoking “stuff” for me, and I’m sure I’m not the only one reading you’re daily blog and taking benefit from your public speaking efforts.

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