Firstly, happy 50th to one of my new friends Sarah Yeates. We met as I was invited to speak to her organisation, then she offered to become a volunteer for DAI, and now, I would consider we are friends. I was disappointed not to be able to travel to Victoria on the weekend just gone to celebrate her birthday with her! This photo is of us together, somewhere earlier this year.
My blog today, written over a few months, started because over the years, I have said, and have heard over and over again from literally hundreds of people with dementia (and our/their families) that many ‘close family and friends’ disappear from our/their lives, after the diagnosis of dementia is made known to them. My husband and two sons and I have certainly lost ‘active’ support from a great number of people who used to hang out with us, and who perhaps simply have no idea how to respond to a diagnosis of dementia. Perhaps people with dementia have unrealistic expectations, but when you compare it with how people respond to other serious illnesses, for example cancer, it is vastly different.
We all, even those around us, have to deal with dementia in our own ways, and as the late Kitwood said, and I hear quoted all around the globe, ‘if you have met one person with dementia, you have done just that; you have only met one person’, and we all experience dementia differently, even those of us with the same type or cause of the particular type of dementia we have been diagnosed with. We all also know, our doctors do their VERY best not to misdiagnose us, as it is, quite frankly, a very difficult diagnosis to make, and even more difficult to receive.
But on the topic of losing friends… I stand corrected.
We do still have many life long friends around us, but also, the thing I have perhaps forgotten to say more often, is that we all develop a lot of new friends, and thanks to the internet, and our online or in person groups such as Dementia Alliance International, and others such as Dementia Mentors or the DEEP groups in the UK, many of us have a large ‘network’ of new friends, people who we share our darkest days with, people who understand exactly what we go through on those days, and people who never ever discount how we feel, or question our dementia. And those people become our family and friends, and replace those who have left us
The DAI Open Members meeting a few weeks ago, reminded me of how much love and support we do receive, and how much we do to support each other. If you have dementia, please consider opening the link and joining us.
I’ve been lucky, as a large group of long term friends and some family still hang out with us, as well as my ‘adopted’ sisters and brothers, who have ensured we feel loved and supported. Interestingly, many of the ‘old’ friends who are still here for us, were all nurses, physiotherapists or allied health professionals, and we also have the support of a few ‘adopted sons and daughters’ and their wives and families, as well as have a group of wonderful neighbours, very close to our front door or just across the road.
Perhaps chosing not to accept Prescribed Disengagement®, and reinvesting in life by remaining active in my community, and continuing to live my own life, has been the key to this?