You know, I was 46 when this whole thing started. It's been a long haul. I didn't realize how young I was....Now that I'm 57. Now, I realize HOW YOUNG I WAS! It's a challenge to keep living "in spite" of the disease NOT "in it"! And I'm going to go here for just a few minutes. I must admit that writing this blog keeps me IN the disease. Not where I want to be. Sometimes I think I need to get a life. But you know what? Every time I get away, do something else, take a break, laugh with friends, whatever; I still come back to Alzheimer world. This is my life! In the time we've been living in Alzheimer world, several friends we've known have passed away from cancer. It seems we were the first to get sick and we'll be the last to die. No one is going to escape their "end." Some will be fast, some will be unexpected, some will be longterm.
So how do you survive caring for someone with a long term illness and not die of exhaustion yourself. Do I cry? Not too often. Did I cry? You bet your sweet bippy I did. I couldn't stop crying inside or out. This is a marathon illness and one that is financially crippling, emotionally exhausting, and mentally draining. It exhausts caregivers and it exhausts friendships. People mourn in the beginning, then some friends move on, but the caregiver can't move on. The caregiver must endure.
So, what are my coping skills? CHOCOLATE !!
No, really. People have asked me how I stay so positive and find joy in this situation. I'm not going to give any holier than thou sermon. Believe me, this is hard and very sad! It's just that I can't "GO THERE."
I made a decision a long time ago to keep myself far away from the drain. The drain is that little hole in your sink that sucks all the water down. If I get to the edge of that drain, then I will get sucked right down into the hole of depression. Imagine the incredible shrinking woman getting sucked right down and eventually drowning. That would be me!
Call it denial. Call it what you want, but to last in this race, I have to be somewhat disciplined. I must sleep. I must exercise (WITHOUT JERRY), I must interact with other people, I must stay around laughter, I must have my alone time. I must create. I must NOT sabotage myself with false hopes. I've given up fine dining, romantic evenings, intimate conversations. I've had to adjust. I'd rather eat in front of "Everyone Loves Raymond" and hear Jerry laugh, than sit by candle light in silence and drift into a melancholy mood. I've learned not to have unrealistic expectations. I refrain from complaining because it doesn't help me. I turn on upbeat music and dance. I listen to talk radio. We watch movies that take us away. I ride my bike. All of this is done in small spurts. Like sprints. I try to stay somewhat structured, with the understanding that things may not get done. I seriously don't sweat the small stuff. (Like his sleeping in his clothes or eating with his fingers.) Sometimes we take naps together on Sunday afternoons. Or any day, for that matter.
I stop wondering when this will be over. It may be next month, it may be 10 more years. I take one day at a time and make the best of it. Unable to plan ahead, I take one step at a time and live in the step I'm in. I am up front with people. My husband has Alzheimer disease. Most of them have grace and compassion. I apologize up front when I don't return phone calls promptly, or invite people over. I offer everyone an open invitation to come over...AND THEY DO. I try to have a cool beverage and some at least some nuts on hand at all times. We are so often surprised when they show up on our deck. That way there's no anxiety on my part to get ready. No pretenses. Just acceptance.
Enough seriousness for today. Love. Love.