Erma’s left to go about her day after coffee and conversation with her best friend. She leaves Sylvia to contemplate the day and so much more.
As we finally come into summer weather, I think often of my family, extended and adopted, as well as my many friends- both near and far- who will be celebrating big milestones with and for their loved ones and the country with great fanfare and zest. My heart becomes instantly full. And then, just as quickly, I grow agitated and even a bit sad and disgusted.
I thought about this long and hard before I decided to share these thoughts, and then I remembered, that each of you has the option to either read and reflect or skim and skedaddle. So, I’m sharing because -to me- this is the stuff that we are meant to share, so that we can help each other through the rough spots. And one day each of us has or will have a couple, several, or many very rough spots. That is inevitable.
When my mother became ill in 2007 and she and Dad came to live with me and my family in California, everything changed. Family dynamics. Relationships. Life in general. My mom fought her battle miles away from many, but still she felt connected to the world. She was still a citizen. Still a mother. A nana. A friend. A sister. An aunt. She received calls, cards, visits, emails, etc. That ability to communicate is so often, too often, taken for granted these days because perhaps it requires so little forethought to text or communicate via technology. (Communication though does require thought– for now anyway.)
When one is fighting for life, it is an internal war of massive proportions. Your loved ones try to empathize and offer support and help to fight the daily skirmishes. The war though, the one that will inevitably be lost, which is really not a defeat but a matter-of-fact in life, is a solitary one. Death. Mom fought with all her might. People admired her strength, her guts, her spirit, and her grace. And indeed, my mom was strong, gutsy, spirited, and graceful. My mother was also a fairly private person who had a very public illness. An illness which everyone- EVERYONE- is touched by and despises.
Here’s where my thoughts, sadness, and disgust come into play. Woe is not I. Woe is WE. We fail in so many ways.
My father as you all know battles another dreaded disease- Alzheimer’s. He’s in the late stages now. He, unlike my mother, was a very public person, yet he has been saddled with a very closeted disease. It is we as a society comprised of supposedly loving families and friends who fail. It’s not that people don’t care. It’s not that awareness isn’t growing. I think it’s this simple and this heart- wrenching. The man that people knew is closeted. While he is locked away in his own mind, it is the key that everyone throws away that makes me sick to my stomach. He can no longer walk the streets. He can no longer go to the coffee shop and shoot the breeze with his buddies or those about town. He can no longer enjoy a meal in his family’s presence. Whereas my mother had the choice as to whether or not she would continue to do those things, my father does not. And therein is where my sadness and disgust emerge.
Alzheimer’s does steal from the person who is afflicted, but my sadness isn’t for my father or for myself. I am saddened by and for the many who don’t see him, or their own friends and loved ones with the illness. Dad is not dead. “Life is for the living” I hear time and again. Guess what? The smiling man who looks fabulous in yellow is very much alive. His pleasures are few, but if you could see how he still enjoys a jelly donut, holding a hand, or someone who smiles at him in passing, you’d know he’s very much here. He’s not the same man at a glance, but he’s the same man. And for the record, I am not a wonderful daughter. I’m just a daughter, a human being, who is doing the best she can. I’m the girl who still sees the light and laughter in the man who taught her to step outside of herself and give back to the community and world at large.
So, during this ensuing week of remembrance, post Memorial Day, remember that the sorrow you feel and condolences you offer to the caregiver while appreciated are not warranted and do not make the caregiver necessarily feel better. I am caring for someone who is still alive. Very much alive. It is a slow process of dying, but the end is not here. In my mind and in the eyes of a power greater than any of us, my father and others who live with this disease are still human, still feel, and still contribute. They are teaching us to value life. I and others who have Alzheimer’s in their faces each day would much rather you see, really see, that our person- our father, husband, brother, uncle, and friend is still there. Is still here. Send a card. Make a visit. It may be hard for you, but trust me, the small battle of getting through the day would be so much easier for the Alzheimer’s patient if he or she was not totally forgotten and closeted. Being locked in his or her own mind is bad enough. And I guarantee that if what you are looking for is a moment to stop and appreciate what you have and to get outside of yourself, Alzheimer’s is the wake-up call.
Remember. Remember. Right now you have that extreme luxury.
Wishing all of us peace, joy, and the power of remembering what it means to live and love fully and with intention and purpose.
So many things come to light when Sylvia sits out in the sunshine on the cove.
