Years ago, I knew of a family who held a wake for their mother. The problem was Mom was still alive in a nursing home.

When the person with dementia enters the later nonverbal stages, they begin to withdraw into themselves; no longer interacting with the world or people around them. At this time, it’s understandable why many families believe their loved one has gone.

So, what happens to the person inside?

That question continually played over in my mind when I first began working with people with dementia, especially those in later stages. I’d see so many sitting in chairs or bedridden either asleep all day or blankly staring into space. Are they still in there or are they an empty shell, dead like that family believed?

Everyone has their own spiritual beliefs and my belief is the spirit is never lost. Some might call it the soul, but for me it is the spark that makes us human. I’m not a religious person having left enforced Catholicism in my early teens. But I am deeply spiritual and feel my life is guided by something much bigger than anything we can comprehend; our spirit is connected to it. I believe the spirit has awareness and understands more about our existence than the small 5% of our conscious mind with its limited brain generated thoughts which is what’s lost in dementia.

It’s comforting for me to know the person with dementia is never gone. I’m absolutely am sure their spirit also continues to exist after death

My friend Frank was 84 and dying after an 18-year battle with Alzheimer’s. I was alone with him holding his hand and listening to the rhythmic rattle of his breath as he neared the end. Suddenly he made a loud sigh and the sound stopped; the silence was deafening. At that moment he turned a greyish color and his body seemed to shrink; something had left. And then the most incredible thing happened! I felt Frank everywhere and I was filled with joy. It was like Frank’s spirit had ignited the room with energy and I was electrified. I hugged myself laughing and with tears of joy congratulated him for being finally free. The clock on the wall counted three minutes and then just as suddenly as it began, he was suddenly gone, and once again the room became silent except for the clicking of that clock. I called the nurse and she asked if I wanted to stay with him a little longer. I looked at the empty shell on the bed and said, “Why? He’s not there anymore.”

Until the actual moment of death, they are always in there and after death, like Frank, they become part of everything. Frank is in my heart forever, a part of me now. Occasionally I get a tingly feeling and for a fleeting moment can sense him still with me.


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