One of the things I’m continually trying to do is grasp what it is like for Maureen living with dementia. I feel the: anger, frustration, fear, and anguish on a daily basis. Maureen still says: ‘she lost her memory once’, and she has probably forgotten her diagnosis of vascular dementia. Therefore, she doesn’t talk about her fears and concerns. So I try to understand what it might be like for her by reading accounts of those who write about their condition, and Norrms put it like this:
AND FEAR OF
This time of year is such a confusing time of year, not just for myself, living with dementia, but also for others and their carer`s and loved ones. I try to look back and try to remember what’s happened this year, as I start to look into the mirror and take a cold hard look at myself, and this awful illness, the two are now linked forever unfortunately. I see staring back, a different man from 12 months ago, ( I think, it’s at this point I look at old photo`s ) Is it only me that can see that blankness creeping into my eyes, that disassociation draining from my pupils, or is that just my Illness? Is it ME looking back at ME? Or is it Lewy Body’s, smirking behind my smile, laughing at me, tormenting me, taunting me of what’s yet to come?
Thoughts come into my mind, happy thoughts, of things achieved, things completed and of things yet to come, until that is, Lewy Body`s walks into the same room in my mind and reminds me of the struggle it has been, the sleepless nights, The hallucinations, The Night terrors and the Horrors of What Lewy Body`s imposes on my family and I on a daily Basis.
It’s at this point the tears start to fall and the feeling of hopelessness envelopes my whole body and mind. As they subside and I wipe away the tears, thoughts turn to next year, well it’s only a couple of weeks away. I always like to say, one minute I was watching Space 1999 and the next I was transported into the year 2015, with not that much knowledge of what happened in-between!! And so to next year……………….
2016 WOW!! Just saying that sounds so very strange to me, dates, times and months don’t come that easy to me these days, but as we all know, time and tide waits for no man / woman, unfortunately, neither does Dementia. If I am very honest, I am dreading the 31st March!! Not the 19th as that’s WRAD World Rocks against dementia day, but what about after that? What about when I retire and try to fill my days with other things except the disease that has ruled my life for the last eight years and will end my life if no cure is found?? How do I fill that gap? Most worrying?
Yes of course I am looking forward to spending my time with my “Angel” Elaine, and yes I am so looking forward to spending more time fishing and gardening, with my kids and going on holiday, but at the end of the day, Lewy Body`s will always be there, chip chip chipping away at my family and I. So as you can see, the New Year can be such a confusing time for people like me and their families. So many family members out there must think exactly the same, have the same fears, the same worries, and so many out there with this disease must also think this, even if they cannot speak this.
All that comes to mind at the moment is
DAY BY DAY is all we can hope for, hope this helps
Norrms Mc Namara Diagnosed with dementia 8 years ago aged 50′