Don’t let dementia become your capricious mistress, something the rest of your life (and that of your family) has to compete with. Don’t live the life of an exile, limited to the symptoms of your or your loved one’s symptoms of dementia. Focus your attention and energy instead on what you have left that is positive and meaningful. And don’t be the constant ‘sojourner back to your old life’. Once as my husband says, there is that third person living in your relationship, there is no going back, but don’t let it become the only focus of your lives. Focus on your assets, not your deficits. Live life as if you might die in your sleep tonight, squeezing all the juice out of it as if you are making a lemon tart! Someone, somewhere (my husband said me!?!), made the comparison of Dementia to Amway. If you have ever been in Amway or known anyone heavily involved with Amway, you will know there are those people who make it their whole life, who just cannot think about or talk about anything else, and if you do that with dementia, you will ‘become’ dementia, with little room or energy for anything else. I’ve been in Amway, and had a good time when I was involved, but although I want my experience of dementia to be as positive as possible, I do not want it to take over my life. It’s okay for it to be my fuel to want to improve the world of dementia and aged care, but I believe to allow it to ‘become’ me would do nothing more than allow the dementia to win. I may lose the battle in the end, but hey, being born is a terminal illness!
Your enthusism for life is one of the thinks that first attracted me to you. Forthright, honest and often confronting but I wouldn’t have you any other way. You say it as you see it and that has been a huge lesson to me.
Well said, such a good analogy (is that the word?), I feel like my life has been taken over by Alzheimer’s (which the love of my life, for 37years, has). No regrets for the past 37 years as so wonderful to have been loved so unconditionally, but the past few years stressful but as much as I accept it all, one still wakes up and goes to sleep thinking about the effects of dementia and what lies ahead. Love your blog Kate, you amaze and delight me, take care, Sandie xx
Thanks Sandie. I know what you mean though when you say you wake up and go to sleep with the effects of dementia and what lies ahead, a bit like a dark cloud or shadow that never quite goes away. And how wonderful to have had the love of your life for 37 years. xo