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.
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??