DAI founding member and Board member, Amy Shives shared her story on My Dementia Story Facebook page some time ago, and has given us permission to publish it here.
Living with dementia, which is what all members of DAI and beyond who are sitting in our “cognitive wheelchairs” have no choice about; it is often a daily grind, with challenges most people would never even imagine unless we tell you.
Thank you Amy for this insightful, honest and truly heartfelt piece. Here is her story…
Dementia is not designed for the weak of heart
By Amy Shives, M Ed.
“The very essence of who I am in the world and how I behave has changed so much that I have lost myself. Without my lifelong friends to mirror back for me the ways we look at life and adjust to it, I have fallen and I can’t get up.
Following literally years of chasing what my various personal problems were caused by, major life changes that I did not sign up for were to occur thus changing the trajectory of my life.
Dementia is not designed for weak of heart . It literally will change who you are. This occurs as a result of secondary issues happening after the long sought after diagnosis. This change for me personally resulted in a new way that I respond to events in my life that were well established prior to dementia.
Some may doubt that these changes a person is challenged with change the essence of the person. With what my life including my relationships has done to my inner core, I believe for me is has.
Dementia has so very many layers of change and adapting to those changes that I often feel as if I have a tornado in my head.
In my case, this tornado has stirred up my very being. Memory problems being the least of my challenges.
Relationships I have had, some over forty years long, have evolved for me rather suddenly and without my consent. As relationships wax and wain over time most of these changes are expected or at the very least understood for people living their lives. As I endeavor to confront the inevitable evolution of mine, I find I am ill equipped to do so.
I have two girlfriends from college. These two women and I were roommates some forty years ago. I now find that their behaviors, and the two women’s behaviors couldn’t be more different, at best annoy me. All of the time. By definition a friendship lasting so many years has gone through stages one would expect, good and bad. My new and unexpected feeling for my friends is at best neutral. I would describe it as a feeling one would have about an acquaintance . I no longer feel any bond with them at all. Their behaviors as persons that is their essence annoy me. I am frequently angry at them for not behaving as I expect. Frankly they could just go away.
Truthfully they have disappointed me a great deal in their support for my disease process. Being college educated women they could have easily read about the vary basic information surrounding the disease. They have not read much, if anything. This fact would have hurt me in the past but I would have quickly worked it through and forgotten it or rationalized the hurt.
My two best friends are now insignificant to me. These people that I have been through a lifetime of maneuvering our way through life, have become acquaintances that I could take or leave depending on my mood.
The very essence of who I am in the world and how I behave has changed so much that I have lost myself.
Without my lifelong friends to mirror back for me the ways we look at life and adjust to it, I have fallen and I can’t get up.”