Weekend disaster

The first Dementia Statement ends with the words ‘ Our illness should not define us nor should we be ashamed of it.’ For the first time I realise that WE have to remember that as well as tell the world. My illness certainly defined me this weekend and I was ashamed of it.
It should have been wonderful, I was going to Woodbrooke Quaker Study Centre in Birmingham,one of my favourite places in the world, one of my favourite events of the year. No trouble getting there, walked into the garden room to find three of my very favourite Quakers, Leonora Wison, Andy Stoller and Eleanor Nesbit,who hugged the breath out of me as none of them had been expecting me. I had been allocated to sleep in the Gandhi room, always gives me a thrill to sleep there and think of how that Great Soul stayed there during his visit to England and slept on the floor not in the comfortable bed provided. Spent a very frustrating 20 minutes trying to get to know my new iphone and failing yet again, decided to go to supper, but couldn’t find my key card. It had to be in the room because I was in the but nowhere could I find it, Got a new one and was late for supper. The first session was a review of the Woodbrooke year,concerns about how a general lack of money seemed to be stopping people coming on courses, Woodbrooke is being stretched very thinly, but also wonderful new initiatives and achievements to hear about. So tired I missed epilogue and went to bed.
Set alarm but it didn’t go off. Struggled to get dressed – I hate winter, ,,,,dy tights, Couldn’t find 2nd key, Late for breakfast, Andy said I was dressed decently, no make up because I had taken one look in my cosmetics bag and just given up. What were those things for. Couldn’t go late to Meeting for Worship because I needed the key I hadn’t got to get out of the main building and into Holland House and everyone else had already gone.
New Key.
The theme of the weekend was creating an inclusive learning community, so there was a Dementia Friends course to be followed by me talking about having AD but still being an associate tutor,still able to come on courses etc etc. First Exercise What words do you associate with Dementia. ‘Senility, Fear, Confusion, Lack of
Control, loneliness, Isolation, Memory Loss’ All very negative. I challenged them when I came to do my talk, but actually they all felt appropriate to me.
Went for a rest after lunch but fell fast asleep and slept until supper time, missing two workshops, so laden with guilt. I had come to be developed after all not to sleep half of the day away. And yes I could not find my key. Couldn’t for shame ask for another so propped my door open with a towel and went down late for supper, went to get coffee from the machine held the mug upside down under the urn, so the boiling coffee went everywhere including over me. Didn’t think I had scalded myself so badly but I am blistered now. Gave up on the evening entertainment because the options were spread all over Woodbrooke and of course I HADN’T GOT A KEY.
Settled down in my room to read the new course brochure, and to look at how the course I thought I was facilitating in the autumn looked on paper. But it wasn’t there. Decided it wasn’t there because who would want me to lead a course anyway.
Good cry.
Opened emails, found perfectly innocuous email from a friend with Dementia,setting out some guidelines for interviewing for staff posts, which were excellent. Decided they were a direct criticism of me sent off angry emails in reply. Usually put anything angry into draft first so it can simmer. They were in draft but I sent them as well. Received genuinely apologetic but hurt emails back including one from someone it is my role to support not to upset. Cried self to sleep again.
Woke up early, sent off grovelling apologies, cleared room, no sign of my collection of keycards. Because I had luggage tried to use lift, forgot you had to keep your finger on the button all the time. Wrecked lift, someone had to be called to reset it. Eventually got bags to luggage store – But I hadn’t got a key.
Breakfast at the silent table.
Great last session on using language in courses that some people might struggle with. Realised that I have reached the stage where I just say God and leave it to the listener to interpret the word as they might need.Discussion about the words we might used in different settings including in our private prayer, grinned because i prayer I can say anything from Hey You To Beloved to the wordless communication of contemplative worship. What the late great Gerard Hughes S.J. once called #gawping at God. I do a lot of that. What a mixture of a blog.

3 thoughts on “Weekend disaster

  1. Dear Shlelagh I’m so sorry it was such a struggle …sounds like you used ingenuity to solve some of the problams

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  2. Shelagh, I love the honesty of your writing. Having lost my keycard at Woodbrooke I know the embarrassment of asking for another! I’d love to talk to you more about your experiences. Perhaps we could meet up some time. Or I could come to MfW with you and chat afterward. In Friendship, Anne Orme, Stone LM

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  3. Reading this made me wonder what it would take to introduce dementia friendly design and support here?

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