Vs my new life with dementia. You might think this is a strange thing to talk about, but for me facing a terminal illness that also seems to be stealing the old me has been hard to come to grips with. There is always the glimmer of strain behind your days, no matter how happy are. And my days are predominantly happy, I am learning to make the most of life with dementia, to jump the hurdles, often now with help from my dear husband or boys and friends. Those of you without dementia, or who have never faced a terminal illness will have no personal idea of the strain it places on individuals and families. You can read books, share experiences with your friends or loved ones, but unless it is happening to you, you will not really know. And because mostly you can’t see my symptoms yet, many of you will doubt me. I too had no idea what it was like, even though I had worked in a dementia ward, and have family and friends with dementia. But different it is, and difficult, and challenging to get used to. And just when you think you have accepted a change, or worked out how to manage it, hey presto, it changes again. As with any new experience, life is changed, but I’ve not had an illness before this that is so imposing and subtle at the same time. At the ADI conference, it was mentioned there is a new diagnosis of dementia in the world every 4 seconds, and we were told we had better get ready to face the epidemic. In my new life, I am ready to face it, not happy about it, but as ready as I’ll ever be.
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nobody but nobody can comment or understand until they walk a mile in your shoes. You are very brave my friend, very brave…
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Remember Kate, you are hiding your symptoms in your blogs. Of course we can’t see them, and so I chip you from time to time, because you are doing so well in spite of your dignosis.
You are aware of your symptoms, because your Diagnostician was BRAVE enough to enlighten you. I pose the question that you may be coming to be too aware of your symptoms and accepting them rather than fighting them.
Consider that the reverse applied and you then formed the opinion that you didn’t have dementia, and carried on your life normally. I know that this can happen. Things start to go wrong and the whispering begins, but denial remains. A catastrophic event occurs and your independence is taken away. The loss of hope robs you of the will to fight this battle of trying to live a normal life.
I believe that when you lose that will to be normal, something shuts down, and circuits are no longer used.
As for an epidemic, I think we are becoming so much more aware of dementia that it seems like an epidemic. The more aware, the more research, and the greater ability to diagnose will see a better future for everyone touched by dementia.
Jeff
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Yes Paul, hiding them I try to do! and I never feel like you are chipping unkindly, and really enjoy our regular repartee. Many people with dementia, me included, have been accused of lying about the diagnosis, so we all occasinally feel a little vulnerable and fragile about it; one friend in Qld has even had doctors come up to her after seeing her present, using her own brain scans, and told her she has stolen someone else’s scan.
Re thinking and behaving as if there has not been a diagnosis, I try to do this most of the time otherwise it would get in the way of living positively, and so far am still fighting the good fight, with a continuing strong will! I blog about the details of the daily up and downs as that is healin for me, and keeps me informed on the days I might forget what I’ve been up to or thinking. I’ll have to ponder your question, am I too aware? for a bit longer before I can reply though.
The researchers and Alzheimer’s Associations are the ones calling it an epidemic, and bringing it to the attention of governments, which is good for the future as you say.
Cheers, Kate
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Happy easter Kate. this sharing I LIKE It is me and my every day.. each morning hoping for an easier day IN IT.. I can never say I have any joy in this new world that the dementia person within me that has taken away from me the personaity that I was proud of and enjoyed. with my past social gorup of friends and loved lifestyle.
This new person we named ” Carol two” 🙂 .. dominates me now and has taken me away from all the activities and lifetyles that I enjoyed so much… Now to make a new life new friends with the same journey. However like you appear to moving into a deeper awarness of this new world that does change US from who we were back then into a new person that we have to accept, and renew our worlds in adjustment for a better quaility of life. However unlike so many Ive heard from their beginnings of the Dementia travels they appear not to be as myself. I strongly miss my past world and cannot return to any o9f those pleasures I found ME in them.
I have struggled intensley to fight these changes. However as with you we have wonderful Husbands that are prepared to accept us, adapt with us and love us “whatever” this is our gift BUT Gods gift to us to endure this as you call it “train journey” into our final destination which is “dementia” and final ending of it all. Hope your Easter you took time to rest and enjoy gods love and peace that mostly were too caught up in our own business we block its presence love and blessings to you. and Peter and see you in Canberra.
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Happy Easter to you and Oscar too darling friend, and I look forward to seeing you in Canberra. Not sure if Peter will make it yet. We’re in transit, waiting in KL for our connecting flight home… can’t wait!!! Hugs always xxx
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How true. I think this alludes to why you documenting your experience is so important. I can’t relate to what you’re going through in that personal first hand sense, but by writing this you give people like me who are lucky enough to not have experienced terminal illness (yet?) themselves the chance to develop a deeper empathy. xoxoxox
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xxxxx
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