Above you see a picture of my grandmother at her 90th birthday party two years ago. It was first time I noticed that she had some difficulties remembering things. Occasionally, she was confused about where she was, what was going on and who she was with but mainly she was like her normal self. The party was special because our whole, large family was there, the weather was great and we could sit chatting and playing games by the lake until late into the evening. Grandma was partying till the early hours.
A year later, she was already having some trouble living home alone. She fell badly a couple of times, accidentally made phone calls to wrong people and often forgot to take her meds. We started a circle with family members where we visited her in turns and soon a nurse joined the circle as well. After a couple of months she was diagnosed with Alzheimer and very quickly it was obvious that she needed to move to a nursing home. Then started the circle between hospitals and nursing homes because she kept having accidents and infections that needed hospital care and every time she left the nursing home they gave her place to the next person in line.
Now, it is two years after that 90th party and she doesn't really recognize anyone who visits. But very rarely, she kind of comes back and understands what is going on, just for a moment or two. I think that is the worst part. To see her face when she realizes her situation and to hear her cry how terrible and embarrassed she feels. During those moments she usually says these few things: "Why do I have to suffer like this? It would have been better to die sooner, I don't want to fade away. This is not life. Can I please come home?"
It destroys me to hear those sentences and not be able to do anything. The smell of the nursing home stays in my clothes after I leave from and her face and words are pressed into me. Maybe forever. If there would be another way, she would choose it. I surely hope that there will be. A pill that you could take when you are still able to make the choice.
It's better to burn than to fade away.