For a long time, a loved one has faced dementia. It began with unexpected forgetfulness. Then she would get lost in a store. After that, she began to lose interest and ability to play her favorite games, bake cookies, or manage her day, and now almost everything she knew and did is distanced from her. Dementia/alzeihmers is a cruel disease, but up until now, thanks to the love and care of multiple relatives and friends, we've been able to make the best of the situation by cooking good meals, special entertaining patterns, sharing photos, telling stories, going on outings, and more. But now, what we did to find the joy and grace in the situation is narrowing greatly--we're at a new stage where the focus is on more intimate, simple care such as care that involves touching, very simple foods, companionship, and help with the most basic human needs. We've hit the end stage of this terrible disease and we have no idea how long this will last or what will happen, but we do have a good and extensive care team in place.
I have known many people who faced this disease with their loved ones, but we never talked a lot about it. When I was with these people, they mainly wanted a reprieve from the grief and struggle this disease causes so our time was spent in other endeavor. Now that I'm experiencing what they experienced, I find myself thinking back to the strength, commitment, and care they showed their loved ones suffering from alzeihmers and dementia. Only when you are experiencing this yourself can you really understand what this disease involves. It's challenging.
Just recently my loved one could no longer recognize herself in a family video or name most family members in a photo. Most of what she loved is lost to her now. The goal is to discover what gives her comfort, joy, and peace, and to engage in those activities. For example, there's a great skin cream she likes rubbed on her face and she expressed happiness when a family member read her poems at a relaxed, easy pace.
There's a lot to learn about this disease and learning about this definitely helps you to cope. Dealing with this is not easy.