Can people find happiness – even joy – while living with dementia? That depends, of course, on one’s definition of happiness and joy. But I do believe that there can be satisfying moments for people with dementia and their caregivers.
World War II left my dad with a brain injury. He was in a coma for six weeks and had to learn to walk and talk again. This he did. He went on to live a successful life, at least until he was in his 70s and fluid started building up behind the scar tissue in his brain. This problem called for a type of surgery that is generally successful. Surgeons inserted a shunt in Dad’s brain to drain off the fluid. He should have been fine, but something went wrong in surgery. He awoke from the surgery with severe dementia from which he never recovered.
For Dad, the path toward helping him live well with dementia was through validation. It was through putting myself in Dad's place and trying to understand his thoughts and wishes, then making them real, that I could help him have moments of happiness.
Dad’s brain told him he’d finished his education to become a medical doctor. The reality was that the war had intervened. Afterward, he had to finish his education while he worked and raised a family. He did not become a doctor. But what good would it do to argue with him? None that I could see.
Dad loved music and thought that he could direct Lawrence Welk’s band while he watched the band on TV. What harm did it do to buy him a conductor’s wand and print out a certificate of thanks for being guest director? None that I could see.
I tried to help him be creative in whatever way he could. For that reason, I went to a used book store and bought him copies of science books that he wanted. He loved having that library even though he could no longer read. The point wasn't whether or not he could still read the books. The point was that this small act allowed him to experience some joy.
Dad’s joy came from feeling that he accomplished something, or at least there seemed to be the possibility that he could. My joy came from helping him feel that way.
The same situation often occurs during the Alzheimer’s transition. While Alzheimer’s symptoms appear more gradually than Dad’s immediate dementia, the disease still changes the brain. People develop their own reality. Often, they can continue with significant accomplishment during the first years after their diagnosis. However, the time will come, just as Dad’s did, where their reality will have little to do with the reality their loved ones see.
How can there be joy in such a situation? Joy can be had by helping our loved one’s with dementia feel that they’ve accomplished what they think they’ve accomplished. That may take some practice on the part of the family, but joy can be part of living with Alzheimer’s when human connection is a priority. When we, as their caregivers, try to put ourselves in their place, we can discover true empathy.
Accomplishment means dignity. Dignity is an important element in pleasure – or joy. People with dementia can go on to accomplish many things, but once they get beyond that level of ability, we who care for them can step into their reality and help them continue to feel the joy of achievement.
I’m not implying that by practicing validation and by putting ourselves in our loved one’s place life will be easy. There will always be moments, days or even weeks where finding any joy would be baffling to even the most patient person. I’m simply saying that for most people with dementia there can still be moments of satisfaction. These moments may only be brief, but fleeting moments are better than nothing.
When I think of my dad, I try to focus on those positive times, because so much of the journey was difficult and I don't want to be left with only negative memories. We can’t lose hope. Part of that hope is searching for moments of satisfaction - or even joy.
Carol is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She runs award winning websites at _ www.mindingourelders.com and_www.mindingoureldersblogs.com. On Twitter, f_ollow Carol @mindingourelder and on Facebook:_ Minding Our Elders
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