When I was given my diagnosis, by three professionals who each answered their mobile phones during our meeting, I came out and had no one to talk to, nowhere to sit and have a cup of tea, quietly, before driving home.
A diagnosis is a bereavement.
For the person with dementia it seems like a death sentence. It is the loss of your future. It is terminal. It is a void.
For the spouse, partner or family, it is a bereavement too. The loss of their spouse or parent. The loss of a future together. The loss of a retirement together, after a lifetime of working.
And it is hopeless. There is no cure. There is no stopping the disease causing the dementia.
It is frightening. It can look like the end of life as we knew it.
It is also what many people regard as the most frightening disease of all. More so than cancer now. And probably the most misunderstood disease.
So what would I have valued? Someone with the disease to talk to. Either when walking out of the consultation, or whenever it felt right in the next weeks.
To hear that actually life goes on just the same. That you mustn’t stop doing what you enjoy. That you should continue to take all the same risks you did before diagnosis.
And to meet other people with the diagnosis at the same stage.
I now know how important and valuable it is to sit down with people with dementia at the same-ish stage.
The days and weeks pass and many people don’t know how to feel.
If you are in a positive mood you may think it is good to know what has been causing these small but growing difficulties.
If you’re feeling down you may think you don’t want anyone to know. You don’t want to meet people, because they will think you are stupid, or mentally ill, because you can’t finish a sentence or keep up with them. And you are ashamed that you are no longer normal and able.
You may find that friends and family no longer visit. They don’t know what to say. They don’t understand the disease. They might even think they could catch it off you.
They want to remember you how you used to be, so they stay away. They actually say that.
They imagine you can’t talk or do things any longer because you have this awful, frightening disease. They can’t stand the thought of long silences, and embarrassing forgetfulness.
So how does this make you feel? When no one actually wants to listen to how you feel.
When you live with dementia you think about it all the time. You question everything you do or say.
Why? Because every trip or mistake or lost word is a reminder that things no longer happen automatically. And if you don’t pause and prepare before you do something you may well do it wrong. Or forget to do it.
And every day you question whether you have got worse.
It’s not a morbid introspection. People say that their loved ones who live with the brain disease become self obsessed. They become less able to think of others’ feelings and needs.
That’s because you are continually examining your actions and your memories and your words, to find the right ones, or to avoid mistakes.
So I think we end up living two lives.
One is our inner self, the one with dementia, who feels lost at times, fogged, unable now and then to do things we used to without thinking. And this inner self has feelings and reflections which you cannot share because people don’t want to hear. So you feel lonely, and you withdraw further.
The second life is the outward facing self, the one who bravely gets on with a smile, because that’s what others want to see. This self is a denial. It is living behind a mask.
And this is why we value peer support groups so much. Because the only people who understand us are people living with dementia. We can open up our inner selves. Reveal our anxieties and doubts. We can know that others feel them too. And we can laugh at our mistakes, at getting stuck in a sentence, or just cursing the world.
Peer groups enable us to get rid of some of our accumulated emotion and introspection so we can look out at the world again and engage with others and do things.
We are, after all, the same person as before the diagnosis. We have probably been incubating our brain disease for over twenty years, and have been aware of slight symptoms for several years. The diagnosis does not change us. It may give us some palliative treatment that eases the effects, and it may enable us to get some support when we need it.
But we are the same person. The same things give us joy and make us smile. We like the same food and drink. We can make choices just as we could a year earlier. For better or for worse, they are our choices and we must be allowed to continue to make them.
As the disease progresses we will indeed suffer at times. We will suffer knowing that we can no longer do or say what we used to. We will need some help now and then.
But we are still inside, so you need to make the effort to reach into our minds and our memories and meet us where we find ourselves. It may not be the world you know, but please just come with us.
Don’t tell us we are wrong. Or we shouldn’t do or say this or that. Just come with us into our reality as we recede from yours.
The end is far off; the disease usually takes many years to debilitate us. Help us to do what makes us smile while we can, rather than slinking off into a dark corner to be forgotten. There are times for all of us when things get too much and the fog descends.
Don’t ignore us when that happens. Just reach out and hold our hand and listen.