At the time, I asked Susan if she would write about it and she then sent me the article below. I then asked if we could share it, and she replied saying: “Of course, feel free to use it and I hope it can open a discussion or at least thoughts for others”, giving us permission to publish it on our weekly blog here to our dementia family (DAI members) and supporters.
Thank you Susan.
“I am told by my children and my family, how giving and generous a woman and mother I have always been. I am flattered and mystified. I now search my heart and soul for what that looked like.
I have been unemployed, outside of the home for I believe 3 years now, my children have children of their own and my world as I once knew it is much different than I had ever imagined it would be.
I have never been one to sit still for too long, so after finally coming to terms with the inability to properly keep my business running, I have moved in with my sister and brother-in-law.
I have been busy reinventing my life and as I do this, I find that my new friend are those living with a dementia diagnosis, just like me. I am satisfied and inspired by the abilities I hear and see coming from my new friends. I want to be strong and brave, forward thinking and as inspiring as they. I busy myself with new projects for a world that can be more effective for those of us living with a chronic disability.
All of this is true is what keeps me moving forward, the hopes that with our combined brilliant minds, we will set the stage for change. And then I have trouble remembering to show up for a chat group, remembering names of what are familiar faces and I am reminded that dementia likes to take it’s fair share of my time too. Far too much time in my opinion!
I with my 5 lovely grandchildren are kept short, so grandma doesn’t get overwhelmed and confused, possibly even a bit cranky. Dementia dictates how long my visits are. Organizing a family dinner, preparing a meal, dementia has selfishly borrowed my skills as well as my sense of smell and taste. I don’t remember birthdays, holidays or even how old I am. Dementia is keeping that last bit of information, safely tucked away from me!
My home has always been open to friends and family, filled with music, impromptu meals and sleep overs by the grandkids. I would give you the shirt off my back if that’s what you needed. These ideas have been robbed by dementia. Some days, I feel more apt, more aware of the life I aspire to and I thank dementia. Thank you dementia for thinking of me less. But because is a selfish prankster, it reappears and takes the spark of ideas I felt so confident of and steps right up front and leaves me feeling unbalanced and unsure again.
Dementia is selfish, it has taken my relationships and stolen my lust, leaving some people to suggest I am cold, hard, noncaring and distant. Dementia is not just an inconsiderate friend who, borrows something and forgets to return it, o, dementia takes my time, my abilities and on some days, my sense of self.
My family is loving and supporting and for this I am grateful. Without them, I may turn sour and entrenched is only the losses. My new friends are pushing forward, initiating and compensating just like the thousands of other people living with dementia.
I am learning this game dementia plays and the rules it would like to make for my life. I have become selfish as well. Dementia will take, but not without it’s having to recognize my keen ability to compensate and reinvent myself. If my old friends could take the time, they would meet a new, improvised and pretty darn good functioning woman, who now hopes to use my experiences living with dementia, for the betterment of those to come.
Yes, dementia is selfish, knowing that, arm yourself for its manipulative ways, learn from those that have come before you and use this newly created mind, to continue the fight for better understanding and living with the selfishness of dementia.”
I agree with Susan and feel what she has written is insightful, and incredibly helpful. Dementia is selfish, in the sense that we have no choice in the many things it changes in us, and we must be ‘armed’ to fight it. The other thing it highlights of rme is about the way others subconsciously often ‘blame’ us for those changes.
It is Mr Dementia who is changing us, and definitely not something we would ever choose for ourselves. As our needs change, which they do without our permission, we need others to modify the way they treat us and speak to us, and we need them to work with us for ways that do suit our ever changing needs.