Norrms, as he’s affectionately known, has been living with dementia for over seven years. First diagnosed with Alzheimer’s and then later with Lewy body dementia, his words inspire and help caregivers see more deeply what it’s like to live with dementia.
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article by Norman (Norrms) Mc Namara
I had just been diagnosed with dementia aged just 50 years old,
this was seven, nearly eight years ago now, and there I stood, at the bottom of
the mountain they call “Dementia” As I looked up I couldn't even see the top of
it as it was covered in cloud and mist, it seemed so very high and impossible
to climb, then, I took my first step.
As I ascended the mountain, the first thing I noticed was the
bleakness of everything, the emptiness and loneliness that surrounded me. As I
looked back I could still see my many friends and family but they seemed to be
diminishing in the distance, getting smaller and smaller, as if my friends were
disappearing one by one, very strange. It went really quiet and all I could
hear were my own thoughts, alone in my head, with absolutely no idea which path
to take, or where to go, all I knew was it was all uphill from here. Whist I
climbed I looked around for help, but there was nobody there, I sought a place
of refuge, but couldn’t find one, and the only notice board I came across on
the mountainside was written many years ago and now faded by years of
weathering, as if they was some kind of help and advice, but it was all mixed
up, the rain had melted it all into one huge mess, and I couldn’t just see it.
The incline seemed to get steeper at every step, and there were
times i could have just sat down and given up, I came so close to doing this on
many occasions i am ashamed to say, the relentless winds of change around me
were starting to affect my walking abilities and my thinking, it would have
been so easy to just give up, but then, on the horizon I saw two paths leading
in totally separate directions, and walked heavily step by step towards them. I
arrived at the crossroads, exhausted and tired and have to admit i sat there
for quite a while deliberating on which path to take. It took so long to
decide, both paths looked the same, and yet, one path was slightly steeper than
the other. The logical side of me saw the easier path as a better bet, but, as
many who know me logical thinking was never one of my strong points!!
So once again I took tentative steps up the much steeper path ,
not knowing where i was going, and certainly not knowing where I would end up,
but one thing I did know was, I wanted to put a stop to the emptiness and
loneliness I felt, I wanted to know as much about this mountain they called ”
DEMENTIA ” as I could, its pitfalls, the way it worked, the many sides of the
mountain face, some which are visible, some which are not, and expose the ones
that are not. I wanted to know as much as possible, because if I was about to
attempt to climb this mountain, right to the TOP and be victorious, I needed to
know as much about it as possible!!
As I climbed
this mountain called Dementia I soon realized there wasn’t that much
information about the mountain, no signs telling me where to go, no maps with
directions, and just around the other side I could see others like me, trying
to climb the mountain but not getting very far because they had no idea where
they were going either. Soon, I caught up with the others and asked then where
they were going?
Thing is,
they weren’t to sure themselves, but soon after we found ourselves all climbing
together, helping each other. Holding on tighter to each other and if one of us
fell, or slipped backward, we started to make a human chain to make sure we didn’t
lose anybody. Friendships were formed, relationships built, and a new way of
climbing was formulated meaning we all started up a new path, not as quite
steep as the other one but just as long for some of us. Before long I had forgotten
about the friends I had lost at the beginning of my climb and marveled in the
new friendships I had made. There were still times when I felt like giving up
and sliding back down the mountain to the bottom as we lost some friends along
the way, the Mountain called Dementia, took its toll on some and they paid the
ultimate price.
After a
while, we found that there were new medicines in the fields on the way up and
it made us think a little clearer , act a little better, walk a little
steadier, but the thing is, we didn’t know if it would help us reach that all
elusive top of the mountain !!! we would all sit there, around the camp fire at
night, devising better ways to make our Journey up the mountain easier, and how
to make it easier for others, talking, communicating and best of all , working
together to make sure as many of us survived as possible. Then, one day BASE
CAMP was in sight.
We pushed and
pushed harder and harder, finding new paths and new ways to help each other,
yes, there were many obstacles in our way, we had rock falls, and times when we
got on each other’s nerves but together we were strong, together we marched up
this mountain quicker, until that wonderful day we reached base camp. Once
there we were greeted by others, friends and family members who we thought had
disappeared, apparently the family members were there all the time, tracking us
slowly, making sure we didn’t fall backwards or back down the mountain, we just
couldn’t see them.
It’s taken a while to reach Base camp, and I have lost so many
friends along the way because of the Mountain they call “Dementia” but so many
have made it this far with me, so many have survived the climb so far, and I
believe this is because we have climbed this Mountain TOGETHER. Who knows? Maybe
someone was filming this as we climbed, and maybe, one day, in the not too
distant future, people will be able to watch the climb so far, that would be
good wouldn’t it??
But until then, very soon we will set off from base camp and
continue the climb, the top still looks such a long way off, but who knows what
we can achieve if we all climb together, if we all climb this.
“MOUNTAIN THEY CALL DEMENTIA.”
“MOUNTAIN THEY CALL DEMENTIA.”
