D is for death. Not Jack’s death. Ultimately, that will be his with which to deal.
I want to talk today about my own death, and the 70% chance that I will die before Jack. That’s the statistic. 70% of caregivers die before the person for whom they are caring. In truth, I very nearly did die three years ago.
Three years ago, before we had a diagnoses, before Progressive Nuclear Palsy robbed Jack of most of his sight, stole his balance and strength, diminished his cognition, and left him with very little control over his own life. Back then, in what Jack and I refer to as the good old days, in the early months of the disease, Jack came to the point when he could no longer drive. That changed both our lives.
A social individual, a man who loves to be the center of attention, and must interact with people, Jack had a full schedule. He attended a couple of veteran’s groups, got together two or three times a week with friends, insisted on going out to the car dealers to see if that key they sent him in the mail unlocked a new BMW, was absolutely obligated to harass the VA – keep those bastards in line. People to see, things to do.
All of this worked to my advantage when Jack could drive.
“Go,” I’d say. “Have fun. Say hello to Jim, or Marty, or Tom for me.” And I’d keep the dog with me and write.
Even in those days I could not leave Jack alone for more than a few hours without arranging for a man (he was increasingly inappropriate with women) to come over and spend time with him. He got anxious. He fell. He got on the phone and created one mess or another. (Once he signed up and paid for lessons to learn to fly) He invited people, dozens of people over for a barbeque. We thought it was his PTSD. We thought age was intensifying his symptoms. We were wrong, of course. What we were living were the early stages of the Progressive Supranuclear Palsy, but we had no way of knowing that at the time. And, in truth, I believe the PSP did exacerbate Jack’s post-traumatic stress.
At that time I was writing six hours a day, traveling to speak at conferences and to market my books, enjoying the hell out of a fantastically talented group of writers and friends. I also had daily heartburn. Heartburn bad enough that, if I didn’t get to my ever-present tub of Tums, which I kept in my purse at all times, I had intense pain and then I’d be running to vomit.
No big deal. I mean, especially compared to everything Jack was going through. I had it under control. Popped a couple of extra-strength antacids a few times a day, and got on with my life. Except more and more, ‘I don’t feel well’ became my standard line when Jack wanted to go back into town for the second or third time in a day. Eventually I did make the time to call my doctor.
Took six weeks to get in. I remember I told the receptionist I could not sit up in the waiting room and asked for a place to lie down while I waited for the doctor. I was exhausted and all I’d done that day was make a couple of trips into town so Jack could go to a veteran’s group and then in the afternoon back into town to pick up a pair of his shoes which weren’t ready when we’d swung by to check on them after the group. The doctor thought I might be coming down with a bad flu that was going around. He sent me home with instructions to drink lots of water. I don’t think I mentioned my heartburn to him.
That night, curled up in bed while Jack watched TV in the next room, I sat up to take a couple of Tums and when the smell of the chalky tablets hit my nose, I got so weak I flopped back onto the bed. A clear internal command came to me then.
“Call an ambulance now, or die.”
I called the ambulance.
Jack came through the room to use the bathroom about then.
“Lock the dog in the back room,” I said. “An ambulance is on the way here.”
He blinked. Stared at me. “Am I sick?” he asked.
When the EMTs got me to the ER, my calcium level was at nineteen. Nineteen out of a possible twenty. The doc said he’s never seen anyone with a level that high, not even when he did his med school autopsy on the guy who died of calcium poisoning. My kidneys shut down. I hallucinated for a few days, not sure how long exactly. I have deliberately shut those visions out of my mind in the three years since my near-death. I was in the hospital for two weeks. One of the many, many tests they did showed that I have a hiatal hernia. Hence the heartburn.
I nearly killed myself on those fun, fruit-flavored antacids that doctors once told me would make my bones strong. If Jack had complained about feeling ill for one tenth as long as I had felt sick, I’d have stormed the VA to get him medical attention, demanded they find out what was wrong. Instead I just kept going, taking care of Jack, getting on with life, assuming I was invincible. I couldn’t be sick. Jack was the one who needed care and attention. I was the healthy one. I was the caregiver.
Now, three years later, I’ve recovered from my calcium overdose. How embarrassing to nearly die because I ODed on Tums! But I still, and increasingly, struggle to take care of myself while Jack’s need for care increases each month. Caregivers Syndrome the doctors call it. How do I make time for my own appointments and lab tests? Jack has a team of eight wonderful professional medical personnel who care for him. He has a crew of pros at the day care he attends three days a week. Every one of them makes my life easier, but I must coordinate with them, everyone must be apprised of the near-constant changes in Jack’s condition. I am ashamed to admit that I have a stack of medical bills about three inches high for which the VA is responsible but has yet to pay. It takes so incredibly much energy and time to deal, and deal, and deal with forcing Veterans Choice to pay for services for which the VA referred Jack. It’s exhausting.
When I have a free hour the last thing I want to do is see yet another damn doctor in order to take care of myself. I do my best. I make time for my own support group. I enjoy short hikes with friends, take the dog to the beach, hang out with my sons. And, yes, I get myself to the doctor on occasion, though as I write this it occurs to me that I never did go back and have that routine fasting lab test my primary care doctor ordered a few months ago.
I remind myself daily that I do not want to be a part of that 70% of caregivers who die before the loved one for whom they care. But, too often self-care just feels like one more thing I have to do before I can relax. So, I commit to doing one thing a day for myself. Even if I don’t want to follow through, even if that one thing is nothing more than a cup of tea or an afternoon nap, or yes, a 7 a.m. run to the lab to get that damn blood draw over with.