Having mental capacity means that in the eyes of medics, and the law, you have the understanding and ability to make decisions for yourself. We often talk about having capacity, especially in my line of work. But, have you ever imagined what it must feel like to start to lose capacity?

I recently attended a Dementia Awareness course and at the very beginning the tutor opened with a piece about what it must feel like when a person starts to lose capacity. I found this very powerful reading and wanted to share this with you all so we can get a sense of what it must be like.

You are in a swirling fog, and half darkness. You are wandering around in a place which seems vaguely familiar and yet you do not know where you are. You cannot make out whether it is night or day, summer or winter. At times the fog clears a little and you can see objects really clearly. Even then, the feeling for their place in a larger pattern of things has gone. You are continually trying to make sense of where you are, but you are overpowered by a kind of dullness and stupidity, you catch hold of a few details but just as you are beginning to get the picture your knowledge slips away and again you are utterly confused.  Whatever you try to do, to tidy up, to put on your shoes, to find your way to the shops to get some food, it goes wrong. You forget what you are trying to do or your body will not obey your instructions.

While you are trailing around like this, and stumbling in the fog you have the impression of people rushing past you, chattering like baboons. They seem so energetic and purposeful but their business is incomprehensible. Occasionally you pick up fragments of conversation and you have the impression that they are talking about you. Sometimes through the gloom and the fog you catch sight of a familiar face but as you move towards the face it vanishes or turns into a demon. There is a sense of menace in the air as if they are about to get you, to take you away to prison or to chuck you callously onto the garbage heap. You feel desperately lost, alone, bewildered, frightened. In this dreadful state you find that you cannot control your bladder or bowels, you are completely losing your grip, you feel dirty, guilty and ashamed. This is so unlike how you used to be that you don’t even know yourself.

You stagger through the fog, desperately looking for somewhere that is comfortable, some place that feels like home, warm, secure with reassuring sights, sounds and smells, but you never succeed in finding it and somehow you know that home is gone forever.

Every now and again you are aware of truly friendly presences and your hand is held with real warmth and affection, but as you begin, hesitatingly and falteringly to respond and try and tell what is happening to you a voice speaks loudly and harshly “you’ll be alright dear “or “just sit down here”. With the sound of the voice, the friendly presence vanishes and you are left again to your shame and isolation.

As you stagger on, doing what you can, from time to time you’re “picked up” rather like being arrested. You are grabbed by people much stronger then yourself, sometimes bundler into a van with others who seem to be equally miserable. You know it’s not the police but it’s a bit like the police. And then there are the interrogations; official people ask you to perform strange tasks which you cannot fully understand, such as counting backwards from one hundred, or obeying the instruction “if you are over 50 put your hand above your head”. You are never told the purpose or the results of these interrogations. After they occur you are simply moved on again by these impersonal agents whom you have no power to protest of resist. You’d be willing to help, eager to cooperate, if only you knew what it was all about.

This is the present reality, everything is falling apart, nothing gets completed, nothing makes sense, but worst of all you know it wasn’t always like this. Behind the fog and darkness there is a clear memory of good times when you knew where and who you were, when you felt close to others and when you were able to preform daily tasks with skill and grace. Once the sun shone brightly and the landscape of life had richness and pattern, but now all that has been vandalized, ruined and you are left in chaos and bitterness, carrying the terrible sense of a loss that can never be made good.

Once you were a person who counted, who made a mark on the world. Now you are nothing and good for nothing. A sense of oppression hangs over you, intensifying at times into naked terror, its meaning is that you might be abounded forever, deprived of all loving contact that once sustained you, left to rot and disintegrate into unbeing.

From Psychotherapy and Dementia

By Dr Tom Kitwood(1990)

This piece really illustrates how frightening it must be to start to lose capacity and how lonely it must feel for the individual, and what’s even more frightening is that this could happen to anyone of us. We have the opportunity to make our wishes known before anyone of us ever does have to go through this and we should grab that opportunity with both hands and start planning for our future.