Thursday, July 11, 2013
It stuns me, at 4am on a Thursday morning, how much I have already forgotten (or buried) of the turmoil that was accepted as a wife caring for a young Alzheimer's husband. For perhaps six years, it grew steadily in its tornado strength and destruction, with two years of cancer before that.
The ache and bewilderment of being a widow is absolutely nothing compared to what a care giver endures, as they witness and support their loved one dissolve before their eyes. The blankness, the aggression, the hours of sleeplessness, the following, the cleaning, the crying, the banality, the accusations - well I need not go on, they are all titles of television dramas starring Kevin Bacon, or just a melting moment for people dealing with this disease.
It continues to take my body, mind, heart and very soul, time to recover from the physical and mental effect of being the main care giver. I know I am still healing, and I am not referring to the widow side of it. My desire for a vacation, change of scenery, has never been for the tan!
I was in a constant tug of war, playing on both sides. Everything and I mean everything, became a challenge. My discovery of an attitude or word that would be effective one day would be fruitless the next. Invitations were a welcome agony. Advice from others would perhaps help or be pointless puffs of wind. I would feel trapped and reluctant to share.
Did I mention my guilt? When I would long for time alone, the time that I have now, and then scream with frustration, because what I wanted was time with health, not the disease. When I wanted my husband, not the Alzheimer's patient. I would want respite, yet time away from my piece of dynamite was agony because I knew a silence would come one day. It was like living in an hour glass that kept tipping.
How on earth did I manage?
How on earth do the brave (and scared) care givers manage?
Those who juggle life on top of being the partner, the second hand, the second functioning half of the brain, while remaining your own entire brain.
"Trouble with you, is that you are not taking care of yourself. When did you last exercise?" OH I LOVED that piece of advice. Yes, let me just go for an hours jog while I continue to care, clean, repeat, feed, dress, listen, repeat, hold, shop, drive, cook, work, pay bills, smile, and repeat all steps, handle with care, on the hour, every hour.
Man, does it take it's toll. Eleven months after and I still catch myself opening the car door for someone and begin to put their seat belt on for them. I still find wet wipes in my pockets. I still go to serve food in bowls not plates. I speak in shorter sentences. Think in shorter sentences.
No amount of moisturizer will give my skin back the emotional, additional ten years that it aged. Nor the skin around my heart. I look and feel older than forty seven for a reason.
Someone said to me at the recent unveiling of my husbands head stone: "Wow you've lost weight and look good, that's wonderful, how did you do it?"
My reply was silence. My inner voice was saying: "After a very long time, my very sick husband died and took all my responsibilities, fears, life, focus, purpose, love and pain with him, you weight obsessed idiot."
It is extraordinary what us ordinary folk can do and become, and simply take it all for granted. In fact, we do not recognize that these are the titles and experiences that deserve respect and honor.
I see myself as a failure because I never became the actress or writer that I wanted to be. Well perhaps I achieved something greater than that?
I send my admiration and strength out to every wife/husband/partner care giver who is right now, wide awake in exhaustion, night and day, listening out for their loved ones breath.
You either know it or you don't - and nothing will ever compare to that experience. It was the honor and horrific success of my life.