For those who prefer to listen to this story:
I am a wife, a mother, a grandmother, a daughter and a sister. I should say my life has been blessed, but find that difficult to say these days. Early in my marriage, I lost my father to a sudden death, but to this day still have my mom at 101 years of age living semi-independently in the house she raised her children. I guess you could say that part of my life balanced out, right?
My children have lives, jobs, homes and children of their own. My husband and I are retired now with a second home near the beach for our summer family gatherings. I sit on the porch listening to the ocean waves far off in the distance and reflect on this life. I search for peace, a peace I don’t often find these days.
When we fell in love, he was the high school football star. He was big and strong while still gentle and kind. When we married he became my life partner. Standing at the edge of the altar that day, he smiled broadly in his tailored tuxedo as dad walked me toward him. When dad passed away, he comforted me in the late stages of my pregnancy for our first born son. He was always there for our children, especially for their sports. And although we had moments of challenge, we also had love.
Ask me how I am today and I’ll answer you.
It depends on so many variables since my husband’s dementia diagnosis.
When he and I sit down over coffee and breakfast each morning, we chat about the calendar and the days activities. My husband no longer fully understands the calendar, but he seems content. So I’m content, too. This is my new world and I convince myself I can cope.
When I give my husband a shower, I’m okay even though it takes a very long time.
When he eats something he’d refuse in the past, I’m surprised but I’m pleased.
When he goes to the gym to work out with his trainer, I know it’s hard on him. But he comes to life for awhile and I’m appreciative.
When others are around, I notice more keenly how far he’s fallen and I’m shocked.
When friends I thought would be there for us become a little more distant, I’m sad.
When caring for my husband prevents me from providing any more support to my mother, I’m regretful.
When searching for information to help us becomes a double-edged sword, I’m disappointed.
When I have to follow up on every single thing I thought medical professionals should and would handle and they don’t, I’m flabbergasted.
And when I read the scary things yet to come in this tragic disease, I want to lock all the doors and windows. I want to close tight all the curtains. I want only to enjoy where my husband is now and not worry about the horrors that I know will come. There may be places for caregivers to vent these days, but I find them just too raw for me now.
So my answer to your question is, “I’m okay”.
I’m sad, but okay. I’m mad, but okay. I’m disappointed, but okay.
This is a terrible road to travel, one that so many baby boomers have yet to face, but will eventually for either themselves or with someone they love. And I worry for them. Why is our news cycle filled with so many frivolous stories? Why aren’t we shouting from the rooftops about this mounting crisis?
Parts of this piece were written by someone I love. I spent time with her recently. We cried, we laughed, we hugged and we connected at the deepest levels, those emotional levels only caregivers seem able to access. I admit, I can’t truly understand the depth of her caregiving journey as I’ve never taken care of my life partner as she does now.
However, we share something that’s special, tragic and yet somehow fulfilling.
She’s right, Alzheimer’s disease and the related dementias are a public health crisis. Six million Americans are diagnosed and living with the disease today and nearly 200,000 more are diagnosed and living with the younger-onset version (diagnosed younger than age 65, sometimes as young as 40). And someone new is diagnosed with these diseases every 65 seconds.
This disease is not simply an “aging-memory-thing”. As the disease progresses, neurons in the brain are damaged or destroyed. Activities that used to be core to an individual’s identity, such as planning for family events, participating in sports or balancing the checkbook, may no longer be possible. Eventually, neurons in the part of the brain enabling a person to carry out basic bodily functions, such as walking and swallowing are affected. Alzheimer’s and related dementias today are ultimately fatal. It takes a special kind of courage to hold onto hope while research continues to explore and understand the brain and this disease in order to deliver earlier diagnosis, effective treatment and a cure.
Just the other day I received a series of pictures from her. They were taken at the beach house within days of us seeing each other. One picture stood out from all the rest; from all the photos of mothers, fathers, sons, grandchildren, beach scenes and summer sunsets.
The picture was of the two of them sitting together in an embrace. Deep in the pixels of that photo I saw the two people I remember from before his diagnosis.
In that embrace, in that moment, I knew she was okay.