I recently read an article on a website where a gentleman wrote and I quote:
(I’ve been amazed ‘in my ignorance’ that some dementia sufferers have awareness that they have this disease, is this the same for all who have the illness? As I’ve always thought my father didn’t know, but now I’m wondering if he did. I’m also surprised that some people can still drive, shop etc, is there a timescale? Does it happen to all or just some?)
So having read that I thought it’s a good opportunity to elaborate on the topic of a sufferer’s individual awareness about their condition and some of the misconceptions that people have.
We all know that this illness can affect each individual in many different ways and I would say that’s very much the scenario within the early stages of the illness, and ‘Yes’ it’s true that for some of us including myself who was diagnosed just over 8 years ago with ‘Mixed dementia, Alzheimer’s, LBD and Parkinson’s disease’ can be aware of our condition and can actually be conscious of the daily affect its having on us and our loved ones ‘and’ be aware of our conditions slow devastating deterioration taking place… which I can assure you unlike happier memories of past is not a pleasant sensation to experience, and what tears me apart inside more than anything else is to be aware and see the anguish in my dear wife’s face and eyes and the knowing that there’s very little I can do to alleviate her own distress…
Personally I think a lot of this awareness is to do with how early the illness was first diagnosed and how soon the person is prescribed one of the special medications ‘which in my case’ I was immediately prescribed (Aricept) that is helping my daily life immensely… and maybe that’s partly the reason that I can still sit working at the computer typing and making recordings about my experiences within the illness and go shopping with my wife, but I must add here that for safety reasons from the moment I was first diagnosed I no longer drive as I considered that other peoples wellbeing were far more paramount than my own needs… which again is a case of being aware of the many implications of our illness…
I guess you could say that dementia has many faces of deception… and maybe sometimes like me when you go out for a walk or shopping and bump into friends (whose names for the life of you, you just can’t remember) during a conversation they might say (You don’t look like you have dementia you look very well) to which I normally reply (Then what should a person with dementia look like) and it’s not unusual for people to say (Well, um… old and feeble) the problem is that they can only see what’s on the surface of our persona they can’t see or feel the reality of the daily anguish inside us, and still many people seem to think that because of our illness we are completely unaware of what’s happening… but that’s not necessarily the state of affairs within the conundrum of our illness… it’s more a case of (Some can still be proactive, ‘but’ others for one reason or another due to the illness are unable to articulate any of the feelings, fears, emotions and anxieties deep inside themselves because of the frustrating tangled maze within the brain) in fact the enigma of dementia can go much further than that as some sufferers suddenly find they have hidden talents that might have been laying dormant within the alcoves of the brain awaiting for the appropriate time to surface as a coping mechanism… for some this can take the form of painting, singing, pottery, or as in my case Poetry and the computer which is something I knew absolutely nothing about until my illness, and for some despite any anxiety they are still able to do public speaking to raise more awareness about the illness… and yet through all this in the early stages some of us can be extremely aware of every debilitating footstep we take, although I’m realistic enough to realize that over a course of time this will diminish, yet having said that, I don’t think we should presume that in the latter stages every sufferer (just because of the loss of abilities) has lost their entire inner awareness and feelings that have become suppressed within the face of dementia…
So please look deep and beyond into any dementia sufferers hazy bewildered eyes and therein you will see a person still fighting their individual quest for existence, right up until the bitter end…
I close this with one of my mottos:
Every day of my life has been like an exciting new quest, but this particular quest within my illness, unlike the faded tapestries of my past days… is a tapestry that at some point in time will eventually be forgotten…
(I’ve been amazed ‘in my ignorance’ that some dementia sufferers have awareness that they have this disease, is this the same for all who have the illness? As I’ve always thought my father didn’t know, but now I’m wondering if he did. I’m also surprised that some people can still drive, shop etc, is there a timescale? Does it happen to all or just some?)
So having read that I thought it’s a good opportunity to elaborate on the topic of a sufferer’s individual awareness about their condition and some of the misconceptions that people have.
We all know that this illness can affect each individual in many different ways and I would say that’s very much the scenario within the early stages of the illness, and ‘Yes’ it’s true that for some of us including myself who was diagnosed just over 8 years ago with ‘Mixed dementia, Alzheimer’s, LBD and Parkinson’s disease’ can be aware of our condition and can actually be conscious of the daily affect its having on us and our loved ones ‘and’ be aware of our conditions slow devastating deterioration taking place… which I can assure you unlike happier memories of past is not a pleasant sensation to experience, and what tears me apart inside more than anything else is to be aware and see the anguish in my dear wife’s face and eyes and the knowing that there’s very little I can do to alleviate her own distress…
Personally I think a lot of this awareness is to do with how early the illness was first diagnosed and how soon the person is prescribed one of the special medications ‘which in my case’ I was immediately prescribed (Aricept) that is helping my daily life immensely… and maybe that’s partly the reason that I can still sit working at the computer typing and making recordings about my experiences within the illness and go shopping with my wife, but I must add here that for safety reasons from the moment I was first diagnosed I no longer drive as I considered that other peoples wellbeing were far more paramount than my own needs… which again is a case of being aware of the many implications of our illness…
I guess you could say that dementia has many faces of deception… and maybe sometimes like me when you go out for a walk or shopping and bump into friends (whose names for the life of you, you just can’t remember) during a conversation they might say (You don’t look like you have dementia you look very well) to which I normally reply (Then what should a person with dementia look like) and it’s not unusual for people to say (Well, um… old and feeble) the problem is that they can only see what’s on the surface of our persona they can’t see or feel the reality of the daily anguish inside us, and still many people seem to think that because of our illness we are completely unaware of what’s happening… but that’s not necessarily the state of affairs within the conundrum of our illness… it’s more a case of (Some can still be proactive, ‘but’ others for one reason or another due to the illness are unable to articulate any of the feelings, fears, emotions and anxieties deep inside themselves because of the frustrating tangled maze within the brain) in fact the enigma of dementia can go much further than that as some sufferers suddenly find they have hidden talents that might have been laying dormant within the alcoves of the brain awaiting for the appropriate time to surface as a coping mechanism… for some this can take the form of painting, singing, pottery, or as in my case Poetry and the computer which is something I knew absolutely nothing about until my illness, and for some despite any anxiety they are still able to do public speaking to raise more awareness about the illness… and yet through all this in the early stages some of us can be extremely aware of every debilitating footstep we take, although I’m realistic enough to realize that over a course of time this will diminish, yet having said that, I don’t think we should presume that in the latter stages every sufferer (just because of the loss of abilities) has lost their entire inner awareness and feelings that have become suppressed within the face of dementia…
So please look deep and beyond into any dementia sufferers hazy bewildered eyes and therein you will see a person still fighting their individual quest for existence, right up until the bitter end…
I close this with one of my mottos:
Every day of my life has been like an exciting new quest, but this particular quest within my illness, unlike the faded tapestries of my past days… is a tapestry that at some point in time will eventually be forgotten…
