I started to write my blog a number of years ago in an attempt to help not only myself but my doctors and others who may be working through a dementia diagnosis, or their families, so that people would know they were not alone.
Much of my blog has been focused on my dementia, the health complications, the interactions with medical professionals. The lack of resources and help available for those living with dementia. I have also spent a great deal of time talking about the importance of peer to peer support, and the importance of those connections. The importance of finding hope and purpose is also something I talk a great deal about, and being involved, finding things that bring you fulfillment. Working with organizations and research groups are two ways that help one feel valued.
All of these things are equally important steps in staying well, living well with dementia, and more emphasis should be put on helping people find those resources to help them stay engaged. Living with any type of illness is not easy, being willing to share with others somehow helps make the hard days easier, and the good days a lot more fun. Yes we do learn to find the joy and fun in life again after diagnosis.
It can be frustrating down right maddening sometimes when we are constantly fighting against an all to still 30 year old believe in what dementia is and looks like, and breaking down the stigma surrounding dementia at times looks and feels no matter how much we try the stigma remains, but it was years in the making so will be years in the breaking. One must not stop trying, or if it’s time for you to stop then hopefully you will have been able to mentor others to pick up where you leave off. Passing the torch is important it helps ensure progress. Put advocating and working with others can not only help us regain self confidence and self worth it can truly make a difference in the lives of others.
So taking those steps to find those groups and people that will work with you, encourage you, will bring personal benefits as well, with friendships, with creating courage within ourselves, helping us discover things about ourselves we never new were locked away.
Something else I realized lately was that although my blog was started to document my journey with dementia and for the most part it still is, at times I have been told and or questioned why I write about other facets of my life and things happening directly or indirectly in my world that impact me.
It is quite simple really, so often when people are diagnosed they are seen as their dementia or a dementia patient, and on and on the list goes, but the fact is I am still me. I am not who I was pre diagnosis, it would be impossible to be, just like people with other illnesses, it changes elements of who we are, how we see the world, our prospectives shift and change, things that mattered no longer do, other things take on more of an importance. However at the core of all of it I am still me, a kind, caring, very quirky individual. I love, I laugh, I cry. I am human.
To write only about my dementia is not a true or real view of someone living with dementia. For in living with my dementia I like all other people still live, I have heartaches and breaks, sadness and happiness, worries and troubles, fears and dreams. Life at times throws more at me than I think I can handle, other times it showers me with such joy and happiness I think I’ll explode. The things effecting my world, the world, my community, my family, still effect and impact me. All of these things have a great impact on my dementia, and managing it takes a lot of work and energy. So not to write about those things would not be a fair or accurate look at the life of someone living with Dementia. So although some may not see that, for me, it’s all an important part of staying true to who I am, to being real, the good the bad and the ugly and allowing people to have a glimpse into a life that is complicated by a dementia diagnosis. And I truly hope this blog will help people have a different or better understanding that people with dementia are people who live with a terminal and often invisible illness, but they are individuals who all aspects of life are still very much a part of, and impacted by. I am so much more than my diagnosis.