" After a diagnosis of dementia, life goes on, nothing seems to have changed except the sky has fallen in. What next? How do we find the way? We choose life and our challenge is to make the most of it. "
Given the choice, we choose life and our challenge is to make the most of it

Address by Robyn and Peter Ashley-Brown to close the Living Well with Dementia Conference held in Sydney on Monday 22 August 2016

Thank you for experience of this day. It is a privilege to be able to come and listen. Thank you to the professionals for your care, concern and work and encouragement. We have been thankful for the help we have received from our doctor and our specialist Dr Walsh, Alzheimer’s Australia NSW and Hunter Health professionals.

I remember one of our specialists in Newcastle saying – when I give a diagnosis of cancer, people lean forward and ask “who do we see now? What do we do?  how long will…will I have…when do we…” a myriad of questions.

When she gave a diagnosis of dementia, people sat back and said nothing.

And this conference pinpoints a dilemma – after a diagnosis of dementia, life goes on, nothing seems to have changed except the sky has fallen in. What next? How do we find the way? Given the choice, we choose life and our challenge is to make the most of it.

We have some gorgeous grandchildren. One of them after her third birthday said “I love dancing Mummy it’s the best thing in the whole unicorn”.

And that’s it! We are all looking for the best thing in the whole unicorn – and sometimes it is illusive! Fleeting, often ignored, passed before we recognise it. We can look back and remember the good holidays, the great surprises, the big events and forget that every night we eat a full meal, every day we talk and laugh with friends and colleagues, and the sun sets and rises with barely a drum roll. And these little ordinary things are our life. They are the big things.

We walk in the evening, and Peter never fails to notice the sun set. It is often a big, gorgeous, splendid thing lighting the lake and colouring the sky golden, red, purple and finally the palest darkness. This is a gift – and is a building block to enjoying life.

Peter’s diagnosis has both diminished and enlarged our life. We struggled at first to find interesting things to do. Peter was not a wood worker, but he liked the idea of chipping away to shape, sand and polish a bit of wood. So we sought out a wood working shed, but the only group we could find used high powered machines. This was not a hobby for a beginner! So some ideas were abandoned. Others which could give quality to our lives were still to be explored.

In his working life Peter was a clergyman in the Diocese of Newcastle. His most obvious skill or talent was his interest in people. He was an excellent pastoral priest. He visited the bereaved and when possible shared memories with them. He loved wedding preparation and the young couples who came for their visits to the Rectory, often talking at depth and late into the night about their expectations and hopes. He organised community events and helped the senior citizens build their centre – and was rewarded at about aged 40 with life membership. He loved community and people. Our past interests were a signpost into our future.

In Peter’s working life, his many meeting notes were dotted with little sketches of old cars, or sailing dinghies. On our trips overseas we visited many art galleries and I have a picture from the 1980s of our two children lying down on a viewing couch in the Louvre totally exasperated with us. So we thought it might be a good idea when Peter first retired to enlarge our interest in art. So about 15 years ago, we took six drawing lessons from a friend and built a rudimentary knowledge. Some years passed before we took it all up again.  And now, on Mondays and Fridays Peter joins a small group from U3A in drawing. Many in the class are proficient and skillful artists and some are more like us, but all without exception are accepting of Peter and me and are hopeful and encouraging. Occasionally we surprise them and they are generous in their praise. I am so glad we trusted them and so glad we accepted our possibilities in spite of our lack of skill.

Painting on Wednesday – another good morning – and Tai Chi on Tuesday morning. Tai Chi is freezing in winter. It is held upstairs in an uninsulated room in our local Sailing club with faded pictures of past masters hanging off the side of their boats looking like Olympic champions. But the view down the lake is magnificent. Tai chi is deceptive. It looks dead easy but it isn’t. It is quite complicated and once again we have a wonderful group of people who enjoy the experience and the exercise, and struggle with the detail as we do.

Choir on Thursdays is wonderful. We sing with about 30 others, often in eight parts. This is not easy music, but it harks back to Peter’s school days and Faunce Allman who took his chapel choir and introduced him to the joys of choral music. We have been in our Tudor Singers Choir many years now and Peter is comfortable and happy in the basses who are subtle supporters.

We have a beautiful big gum outside our front door and in front of it thanks to the foresight of the local council, we have a big naked pole decked with a wide power outlet. Again we have a choice, to focus on the gum or the pole…

For Peter the biggest “pole” has been giving up his driver’s licence, but he has always been thankful that I have been able to drive. The caravan has gone; we have downsized to a manageable apartment. Our daughter and son and their spouses have been always thoughtful and caring, dropping in, organising outings and the grandchildren have given us a future. Who could resist the four year old who when asked how old he was said: I’m four. And I’ve been four for a very long time.

So that is the glimpse into the best in our unicorn: painting, drawing, Tai chi, sunsets, our little family, and our church community. We count the blessings we have. So for you, if you have a partner with dementia, or a client, a family member or friend – there are times to cherish. Life does go on, there is beauty in the sunsets and the art classes. There are still smiles to have and meals to share, people to love and moments to be thankful for.

 Posted: August 24th, 2016
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