They leave slowly. The exit is gradual. Like a teenager sneaking out for the night, they inch closer and closer to the door and eventually exit. They are gone. Dementia steals the memories, the words, and the abilities of our loved ones and they are gone.
But are they really gone?
In a Far Side cartoon two pilots are looking at a mountain goat through a hole in the clouds. The one pilot says to the other, “Say…What’s a mountain goat doing way up here in a cloud bank?” Just like clouds hide things, dementia hides our loved ones. Neither makes anything or anyone disappear.
Please don’t misunderstand me, caring for a loved one that is dying like this is difficult, brutal even. There are so many mini-deaths they will suffer as will you. They will lose freedoms one by one. They will lose their independence little by little. You will lose your loved one, bit by bit. These are all mini-deaths and need the recognition of their reality so we can begin to heal.
Remember, they are still your loved one. They are still your mother, father, brother, sister, aunt, uncle, and friend.
Skeptical? Two movies on Netflix that might convince you otherwise.
“Alive Inside” is about music’s ability to clear the fog of dementia and bring life to the people hearing it.
“I’ll Be Me” is about Glen Campbell Alzheimer’s and his farewell tour.
I have seen the power of music in the lives of people with whom I work. I assure you, your loved ones are still there even if the clouds are hiding them.
I remind myself of this reality by reading a prayer written by Michele M. Bilyeu. She writes, “I pray that [caregivers and family members] will care for their patients and loved ones as the people they truly are . . . and not just who they seem to have become.”
With that in mind I would like to share what I wrote for someone I love facing dementia:
At some point in this journey I hope you will realize that our love for you is not dependent upon your ability to love us. Your memories of us may fade, but our memories of you will remain vibrant. When things fade to black for you, things for us will burst into Ultra High Definition color. You may forget what we are doing, where we are going, or why any of us are with you. Don’t worry…we’ve got this. We will not forget.
Your dignity will remain intact. You will be honored and cherished. You will not be forgotten. Of that, we will make sure.
Sure, we’re all afraid. We have all run the scenarios. We have come to some similar conclusions. We have cried. We have mourned. We have denied, gotten angry, and more. The future is what is scary. It is dark and foreboding. There is no good outcome. It is easy to jump to spend time in future.
Remember, all of this and more are in the future. None of it has happened. Where we are is right here, right now. And right here and right now there is enough grace, hope, and love for all of us. Yes, right now there is darkness, tears, sorrow, and chaos. But right now there is also enough light, laughter, joy, and peace to help us make it through. So please stay here with us. We promise to stay here with you.
You are not in this alone. When you suffer, we suffer. When you have a good day, we have a good day. And, when you breathe your last, we will wonder how we will breathe again. That’s cost of love and you are worth it.
Let’s sit here for a while. We can enjoy the birds, the sunshine, the laughter that surrounds us, and the warmth of an embrace.
We will have time to make friends with the next moment when that moment arrives.
We are here now. And we will be here with you when the next moment arrives.
I will love you always.
One thought on “Seeing clearly on a cloudy day”
Thank you for this and your previous post. I copied them to share with my siblings. At 94 my mom is exhibiting signs of dementia. My dad went out with such dignity and grace. His faith was strong and up through the end, he was himself, dignified, strong, thinking of us. His death was the most difficult thing I ever experienced, and now looking back it seems so graceful, and even easy. Compared to my mom, who has always been so tortured/torturing. She shares with me her dreams of Hell, and is tormented by her own mortality, yet wants to hear nothing of God She is going out very hard and slow and I sometimes struggle to see His presence in any of it. Then a light shines through, sparkling on the freshly fallen snow , or in the words of an old pastor I once knew, utilizing his gift as a beacon, a bearer of Light.