We are privileged this week for our weekly blog series to have Dr Jennifer Bute, a member of the Circle of Friends in Dementia Alliance International agree to write and share this story of her own experience of living well with dementia. Not everyone sees dementia as a gift, but it is wonderful when we can see the positives, and the gifts is can provide, alongside the negatives and difficulties it most definitely presents. Thank you Jennifer.
“When I was working in Africa I was given this pot by a grateful patient and I sent it back to the UK by post…. how daft can you be? And that was before my diagnosis of dementia! When it arrived it was in pieces and it was suggested it should be quietly ‘put away’ in the bin. However I loved doing jigsaws and so with my obstinate nature I put it together again and I think it is more beautiful now than it was before. A gift that is now far more precious than if it had not been broken.
In the same way I think that living with dementia has enriched my life. I am so grateful for now being able to understand dementia from the ‘inside’ , so different to what I learnt when my father had dementia or when working as a Doctor. I remember the difference it made to patients when suffering a stroke changed from passive waiting to active intervention with amazing results and I think we need to facilitate the same for dementia!
I loved evidence based medicine and was passionate about inspiring others to have ‘Best Practice’. So now I am passionate about ‘Best Practice for Dementia and believe we can improve things and definitely slow down or even reverse some of the deterioration. I love to encourage others to be positive about what we cannot ‘undo’ but
we can certainly rebuild our lives. Even if we have ‘damaged’ brains, we are still of immense worth and value and I have no intention of being ‘put away’ !
I have the privilege of living in a dementia friendly village and have got to know others who also walk this path. I am always learning from them, listening to their stories and finding what helps to enable them to remain as independent as possible rather than just let them give up, thinking nothing can be done. It might take some effort but it is worth it.
I am so grateful to have opportunities to get to know others nationally and also internationally who are living with dementia who also encourage me and enrich my life. As I get to know these people I see how beautiful they are because the ‘damage’ has brought out such potential to change things for the better. Together we seek to repair
societies attitudes to us by showing that we are still real people with something to say. We can also encourage professionals to listen to those of us living with dementia, who assume they know more about it than we do.
Everytime I look at my clay pot I am grateful for what happened to it, in the same way I am grateful that I have dementia and can now use my medical training and my past professional standing for something so worthwhile.”
The following Vimeo recording is Jennifer describing “What dementia is to me”.