Danya's Dementia Diagnosis

It started for me when I went to see my G.P. I don’t recall why I went, I very rarely get sick, but I think I was having some dizziness and had a permanently swollen left leg, so I was wondering if there might be a problem with my circulation.

Whatever it was I went for, I’m fairly sure it had nothing directly to do with my brain, or my memory, and yet do I, can I, really know that for sure? No I can’t, because with the passage of time I’ve come to see that, not always, but in general, ‘knowing for sure’ is, for me, becoming a thing of the past.

I do remember that during her examination the doctor, rather randomly, asked me to read some details about a Mr Brown and his address etc, then answer her questions on what I’d read. I left the appointment none the wiser, but some weeks later I was sent for a brain scan. Following the brain scan I was given an appointment to visit a consultant, a lovely lady who gave me the very uncomfortable, unlovely and totally unexpected diagnosis of Alzhiemers.

I remember I cried out in shock when she told me. The Idea of dementia and I becoming entangled had never, at any single point in my life, occurred to me, though later my daughters said I had discussed the possibility with them. All I know for sure was that on that day, on the inside, I was screaming over and over NO! No. No. Not Alzhiemers! Not THAT! Not ME!!

At some point I was directed towards and started coming to the MCST group. Before attending I was horrified by the very thought of it and was reminded of a quote from either Oscar Wilde or Noel Coward, who supposedly said he’d never want to be a member of any club that would have him. But that group has become a life-saver and the high spot of my week.

I love the people who run it and the other people who attend, and have come to see them as my friends. We laugh a lot when we’re there, and I’m able to feel part of things again, instead of standing back with my mouth closed in case I make some stupid mistake, which I often do now when I’m around other people. These days my short term memory is becoming less and less reliable so I’ve had to learn, though still don’t always remember, that in order to carry out an intention, purchase or plan of any value I must write it down or it will simply fade away.

I’ve walked into too many rooms, shops and situations intending to say something, buy something or enquire about something, only to discover when I arrive, that I have absolutely no memory at all of what that intention was. I recently discovered, through an article I read on Alzheimers, that my brain, which has a huge job to do - literally running the whole show of my life - is slowly shrinking and so, in order to do the best it can for me, it simply drops the latest memory.

After all, I was managing to live, breathe and function immediately before that thought came, so, from my brain’s perspective, the new thought is clearly dispensable. I feel so very moved by knowing my poor shrinking brain is still doing everything it possibly can to take care of me, and I try to help myself by remembering to write things down before they fade. It’s not always viable but I do try my best.

Having said that, outside of my experience in the group, I loathe bearing this level of forgetfulness. I don’t speak much now because I don’t want people in my community to realise how bad my memory is. I’m trying to learn to deal with this gracefully, but I’ve always been a bit arrogant and hate feeling stupid and inarticulate. It’s very trying for me when I get into a muddle, lose my way, my thread, my car or my comprehension. And I hate that I now spend an unfair amount of time being in a muddle, lost, bewildered or confused.

Recently I came to a point where I felt at times I was being patronised by the group of friends I’d confided in, so I no longer mix with them. When I’m with my family, who are wonderful and who mean the world to me, I often feel I’m a nuisance, but it’s not what they want me to feel, and, in truth, that’s not what I am. What I am is a person carrying the burden of a shrinking brain through a world that is beginning to outstrip and outwit me. At times I find myself getting very stressed and anxious, which in turn causes me to become shaky and overwrought, both physically and mentally.

When I’m in that state my memory is absolutely terrible, I become mentally incompetent and my body feels flooded with adrenaline to the point I feel I can barely function. This overwhelming inability to think or articulate when stressed is one of the worst experiences I’ve ever had, leading to awful feelings of humiliation and uselessness, which turn into a vicious circle of failure. But I’m trying to retrain myself to do what I have so often taught others.To stop when panicking and take deep slow breaths. To slow down my thoughts. To soothe myself and, instead of hating my condition, to stop and thank my brain for being so brave, sturdy and resilient in its efforts to keep the whole ‘Me’ machine running as well as it possibly can.

For me, meditation, long walks, kindness, friendship, low pressure and deep breathing are the things that help me the most. I can do the meditation, walking and deep breathing by myself, but the MCST group I attend provides me with the other ingredients for two hours a week, in an environment where there is no pressure, no patronising, criticism or judgement to cause me distress, worry or concern.

For two hours a week my problems seem to take a holiday and friendship and laughter takes their place. I’m always sorry to leave at the end of the session because I believe we all care about and for one another, and my time spent there always passes way too quickly, The MCST group and those who run it are a lifeline as I strive to thrive in the increasingly high seas of my life in the world outside.