Reflections on 6 days at Woodbrooke

As I travel down to London in a wet and windy Friday, I find myself reflecting on the 6 days I have spent at Woodbrooke.

For me it is my version of Wendy Mitchell’s Keswick, a place of respite from the world of Dementia.

It’s an opportunity to leave Dementia at the door, to start each day in silence at the Quaker meetings, silently reflecting, to sit in the gardens enjoying the peace and bird song.

It is also a form of respite not just for me but for family as well.

It is important to remember that family get the diagnosis as well, roles within relationships change, new challenges and frustrations appear over time, anger and sadness can produce its own challenges.

We are still the same person the day after a diagnosis as the day before, over time we change outwardly but inside we are still the same person, it is just there is a physical change to our brains, slowly shrinking to about a third of its size.

Gradually over time, more and more decisions are made for us not with us, the gradual belief that it is not appropriate for us to do certain things.

Yet we may still want to go to a , continue taking part in an activity, with a hobby, church service/Quaker meeting.

There is a real danger that by denying a person their right to continue doing the things that they enjoy, will have a negative effect on their mental health.

As a recent social media suggested, may be sometimes it is the embarrassment of those around us rather than our perceived abilities that stops us doing those things.

As this chronic terminal disease has progressed, we may lose the ability to express our unmet needs.

Imagine reader, someone coming up to you in the street for directions, you only speak English and they can only speak say Russian.

They know exactly what they are asking you but the words are in Russian.

You do not understand Russian and with the best intentions you try to work out what they are saying and they become frustrated.

You could work with them, Google for images of places of interest, Google Maps or Google Translate or other alternative ways of communicating.

In fact you take the easier option and make the decision to point left assuming that is the direction they wish to take, when in fact where they need to go is right.

Just a simple example of making a decision for, not with, ignoring an unmet need of a person for the benefit of yourself.

It has certainly been beneficial spending time there and I will be back there soon, if only for a couple of days.

As things are progressing, it is becoming more important to take time out, it is not a miracle cure but for me it can help at this time.

It may be a little like King Canute trying to stop the sea encroaching on the beach, it is inevitable and I suppose that one day the tide of Dementia will win the battle.

But rather than being sat in a chair as Canute did, I will try to stem the tide of Dementia for as long as I can.

To quote my friend Chris Roberts I may have Dementia but it doesn’t have me… yet.

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