When I was 14 years of age, it became acutely clear to me that “if it was to be, it was up to me”. What happened that day in 1971 taught me categorically that to survive, I would have to become more resilient, and completely self sufficient.
It was a powerful experience that determined without my being conscious of it at the time, my strong independence. That day made it clear I could not rely on unconditional love or support at home, and this realisation made me too independent. Perhaps because of it, and like many others, I find it hard to ask for help. And as if dementia isn’t enough to deal with, the usual ups and downs of life continue…
I sometimes feel lost…
Feeling lost was new to me, as I had never felt completely alone or lost. I like my own company, so being alone is not what I’m talking about. I’m also not lost due to any ‘symptoms’ of dementia! Nope, definitely no inappropriate wandering! And it is vastly different to losing my undies!
Anyway, the feeling was so strong, I decided to look it up.
Whenever I talked to my late grandfather, we both always decided that when curious, or in doubt about something, it was best to go to the dictionary or encyclopaedia! He was not alive in the times of google, and most households had large dictionaries and a set of Encyclopaedias.
Definitions of lost include: If you describe something as lost, you mean that you no longer have it or it no longer exists; unable to be found or recovered; confused or bewildered; in the sense of wasted, a lost opportunity, in the sense of gone, no longer possessed or existing
Thanks for sharing your story, I can relate to some .My Life Journey has been tough ,But I had the soul strength to be centered to survive.
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dear Kate, this is such a moving post. Thank you so much for sharing with us. I am so sorry that the child you were at 14 had such a devastating experience.
I know the sorrow and difficulty caused when a powerful family member does not provide support or care.
It is ten years since you and I met in London. It was an honour Kate, and I wish you a rich life still xx
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Dear Trish, it is wonderful to hear from you, and thank you for your kind words. As you know too, life goes on for us all, with and without dementia. xx
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Hi Kate.
I am new to your website and have just bought your book ‘What the Hell Happened to My Brain’. I want you to know that I admire your dedication and devotion in advocating that a happy, productive and enriching life remains possible despite a dementia diagnosis.
As for feeling lost and where to now? At present, I can relate to that as I have been overtaken by a feeling of ‘what more can I do?’ I am tired and have fought hard for my partner in advocating for his peace of mind and quality of life against an opposition of psychotropics and being hidden away in a secure dementia unit. He has been in a secure dementia unit for 5 years now and is apparently untreatable. I know in my heart the enemy within has been the many medications that have caused a prolonged delirium and has hastened the decline of his cognition and stolen most of his executive functions.
Two days ago he was in his bed calling and reaching out to his father that he was coming home while tears ran down his cheeks. His father passed 30 years ago. I have witnessed so much of his suffering and have not been able to change it despite my best efforts. Dementia is brutal enough without adding psychiatric drugs because they are loud or wander or a danger to themselves or any other excuse that can be thought up because of a lack of appropriately skilled staff.
My heartfelt thanks go out to your fighting spirit and others like yourself who are endeavoring to eradicate the stigma of dementia and hold humanity accountable for the unnecessary suffering of these people due to ill-founded treatment and management methods.
Keep putting one foot in front of the other, Kate – baby steps add up. Thanks for your incredibly passionate and persistent hard work.
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Thank you for sharing your own experience and thoughts… sending solidarity and hope although I’m more than aware that wont change things for your partner. It’s been a long time since I’ve shared much of my personal experiences related to dementia, so please know your comment is appreciated and motivates me to get back to a regular post. Take care 🌷🌷🌷
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