This weeks blog was written by Dena Dotson, one of our founders and an inaugural Board member of Dementia Alliance International. It is a deeply personal insight into what it is like for her living with younger onset dementia. Thank you Dena for sharing this with us.
How would you feel if you encountered this?
By Dena Dotson
How would you feel if slowly but very steadily, you were having more and more trouble communicating? There is a slow persistent panic that is always with you. When people talk, they talk around you. They do this maybe because of the distant look in your eye. I know I'm not going to remember so what's the point? How about wanting to get out of bed in the morning, but for several reasons you can't. One of the main reasons being that there is just too much waiting for you. People, things that need to be taken care of, phone calls that should be made. But as I lie there it's just too much, too overwhelming.
Life was going along... In one doctor visit your whole world as you knew it is over. The unending pressure of planning for the end. That's what they throw at you. All the while you are on a rollercoaster ride with this disease. One moment you feel sort of like yourself and you think how good that feels. That feeling could last a moment, an hour, half a day or maybe a few days. In the beginning it's just frustrating and maddening and wears you out. Then it's a bittersweet enjoyment of that feeling. You don't know how long it will last so you try to enjoy it while it's there. And while this is happening you are having to adjust to the new you, and of course all the people around you that are noticing the new you. Most of the people go away, never to return. This is just a little bit of what it's like. The financial aspect is devastating. And even that is an understatement.
I am posting this for understanding and insight into this disease, NOT for sympathy. I have too many of my friends that are living with this disease and seeing all their struggles. The amount of money spent on research into dementia is nothing in comparison to many others. The numbers are staggering of people getting dementia. It is an epidemic. Please don't kid yourself. That is a fact. Dementia knows no limits. It can strike anyone. They don't know the cause, there is no cure and very little to treat it. NOTHING slows the progression. They can't even say for sure that you even have it until your dead and have an autopsy. Until then it is "probable".
Copyright: Dena Dotson and Dementia Allpiance International
Editor: Kate Swaffer