What It's Like Living with Dementia

The idea: Mike Donohue shares, from the perspective of someone WITH dementia, what it's like living with dementia and what he's done about it.


Read this article: Accepting Alzheimers, Coping in Alzheimer’s World that was posted on Alzheimer’s Reading Room (ARR).It is Bob DeMarco’s characterization of what it is for the Caregiver dealing in the changed world, the parallel universe, of the Caregiver. It is well worth the read and more worth the thought about it.

I read it, agreed wholeheartedly with Bob’s appraisal of his experience as a caretaker for his mother in this weird world particularly the part where he describes how he learned to cope in it. As I read it I thought of the sameness and the difference it is being in the same world as one afflicted with Dementia and not one affected by Dementia as a Caregiver is.

I have it, have had it for more than the 6 years that have passed since I was told I have it, and I truly find it a different world. I describe it as being on the other side of a “Paradigm Shift” that occurred in my life making everything different. For it I have a love/hate attachment.

Everything that was is no longer. Everything that is requires coping skill and acceptance. Above all it demands Patience!  Where once my life had far horizons it now consists of tightly binding orbits within which I cannot get out.

Everything I am, everything I encounter is limited. I can no longer be, no longer go, must always assess every step for the limits in which I can take it. Never in my 69 years when faced with the diagnosis did I believe this could – would happen to me. Like a teenager I saw a world where this happened to others not me!

I need to be accepted for what I am as I am. I cannot be remembered for what I was. That is over and done with. Trouble lurks there should I even think of going there or let anyone try to take me back there. I need to be dealt with as I am. I want to be known for who I now am, accepted as such and befriended for who I now am. There is a lot left of me that is estimable and worth some one’s time and effort in getting to know

The stereotypes that rule our definition are disarming and demeaning. They wean what is left of us, both isolating us and prompting us to self-isolate ourselves to avoid the pain of how we appear to others.

No one knows how helpful we could be if effort were made to get us together, if programs were developed to give us socialization and creative intellectual involvement. Not only would this give us a life we would provide savings for everyone in return. The more involvement and stimulation we have, a good quality of life, the greater likelihood this will prolong us functioning within the Early Stage now occupied by us and saving everyone the cost of caring for us.

I sincerely believe given a lot more care and concern in the early stages the more amenable we will be in the later stages of this disease.

Crying doom about Dementia and using that as I cudgel to raise funds to research and find a cure are so counter-productive for our need now and the needs of those yet to succumb to this disease.

That is the dark side of this condition. There are good sides, too many to count. If you have read anything I have written you have read that. Having this disease I consider myself blessed.

Unlike so many of my peers who continue to work and try to hold on to what was and who they believed themselves to be, or those who sit by and lament about what age has done to them, I have accepted this curse dedicating what remains of my life to try to do some good with it. My blessing starts with remaining cognitive and analytical. I am fully aware of what has and is happening to me. I am most cognizant of the downward spiral I am on. I can still read and write about it and give it some understanding.

This understanding gives me the same gift as 20 years of acute alcoholism gave me when it forced me to join Alcoholics Anonymous (AA). There I learned to cope with abstinence and embrace a sober way of life. For 30 years I built on what I had learned in AA then encountered AD. Blessed with the first experience I applied it to the second experience. Using the same tools of AA I was able to find the good in what happened and make the best of it.

Dedicated as I have chosen to be I have more peace in my life and serenity than I ever thought possible. Added to that, with the tools I had about me, I now can understand why I have it. My life was as yet unfinished when I came down with Dementia. Looking at the way I got it, I now know I got it to do something worthwhile with it while I still had life in me.

Published on 05 February 2012
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