"I am a nothing"

“I am a nothing. You don’t know what that’s like.”

How to answer that? The obvious, of course- you are NOT a “nothing.” You are my everything. You matter. This disease sucks and has taken your purpose and value that came from your work. I GET that. I just can’t FIX it. How I wish to God I could.

Where did this conversation start? Somewhere stupid, of course. Casper won’t wear her glasses, but she can’t see well without them. That makes her more disoriented and dependent because she can’t see. The obvious answer is to wear glasses full time, not to depend on me. It’s bad enough when you are already a bit fuzzy. To add voluntary vision issues is just, well, …not such a great idea, to say the least.

“Why won’t you wear them? They help, and besides, you look great with them on.” “I just don’t care to.” Had I listened with a third ear, I would have heard “Because I am already different, dependent, and feeling old and decrepit. Why should I wear glasses all the time too?” What I heard was “I just don’t wanna, and you can’t make me.” You just know where that’s headed, don’t you?

I KNOW this stuff. I spend hours daily with families in this situation. Whether it’s using oxygen (I don’t like it), or a walker (I’m not a cripple) or having a caregiver (you can’t make me), I see this all day long. The behind the scenes answer is “I hate what this disease is doing to my pride and independence, and you are rubbing it in.” “I want my old life back.” “I can’t accept my life has changed this much.” I totally agree. It’s lousy when anyone becomes dependent. When driving is dangerous. When a career has to be left behind. It stinks. But it is a reality, and has to be faced.

“Okay, fine. Don’t wear them. I’ll carry the spare. But I think you would be better able to find your way around if you had them on.” Woops- cardinal sin #1. Never, ever tell a person facing loss that you know better than they do. Salt and wounds do not mix. I can see the reaction. Instantly.

“Let’s get all of our eyes examined. We have our new insurance. Let’s just get everybody checked. Maybe contacts?” Spread the pain all over? Normalize it? “Nope.”

Silence. It takes up a lot of space. It’s overwhelming. And it never happens like this between us.

“I want to go back to work.”

Oh crap. Now what?

“I’m nobody. I don’t do anything.” Just then Kerry calls. On Casper’s phone. Checking in, letting her know when she’ll be home. Casper’s line- not mine. “That’s one person you are somebody to. We NEED you.”

“I can do my job. I am good at it.” I know you were. You were truly one of the best nurses I saw with hospice, here and in Florida. You cared with your heart, but were objective too. You never ever lied to anyone about a rosy prognosis. You were on top of symptoms. You guided patients to tough decisions. I saw it in the field, I saw it in my home with Linda. But you can’t do that anymore. At least not now.

“You can’t work. Dr. Mall said so. Our memory is too challenging, and you get too tired. You are exhausted sometimes just walking upstairs. How would you drive?” “I did it before. I am fine. I don’t have Parkinson’s. I am not sick.”

This is just getting better and better. It’s late, we are tired, it was a long day and included difficulty with a phlebotomist who shouted the names of Casper’s meds all over the lab and who was incapable of doing her job. Now this.

“I want to work.”

I get that. I wish you could. It would help the economy in this house, and would give you purpose. But you shake some days so badly. You sweat till you are soaked. You sleep late and nap, and early. That doesn’t add up to work hours. I try to point that out. “I can manage it. I am not sick.”

Hardball. “You have every single symptom on the PD checklist. You even have the ones nobody counts. Your memory sucks. And you know it.” “Nope. I am fine.”

Harderball. “Okay, go back to work. But you can’t miss any days. Because you are receiving Social Security, and it took an act of God to get it. You are about to get Medicare. No more HMO nonsense. No more begging for referrals. You can finally see the neuro without three visits to a primary care provider and paying him to write a referral. But go ahead. Go back. And when you are too tired three days in a week, there won’t be income, or insurance. And I will get to do it all over again. The letters, the records, the appeals. And by then Medicare might be done by voucher, and you will not find coverage because you do, indeed, have PD. Then what?”

“You had to do all that?” Yep, indeed. Social Security is not a walk in the park. It took hours, and miles, and letters, and phone calls, and money. And it will again if you earn more than a few bucks. I KNOW you hate not working. But to undo all that?

“You have an entire workshop in the garage. You have not even used the tools.” “I have no interest.” “The Student Run Health Clinic needs nurses. You could manage that twice a month as a volunteer.” “I want to work. I want to contribute.” I get that. You have worked since you were a child. You picked tobacco, hung it in the barns to dry, cooked, washed dishes, worked in a factory, graded roads, and became a nurse. You have worked all your life. This is not you, and not fair, and not okay. But it is reality, however ugly.

“I am not sick.” And you turn over and shut your eyes. I know you are not asleep. In your sleep you choke. Two hours later you are finally out. You are twitching, and jumping, and struggling to get air at times. But at least you are asleep. I am now wide awake. I am reconfiguring my day for tomorrow, so you can ride along for a few hours in the middle of the day, because you really cannot wake up early anymore. You used to get up at 5am, make us coffee, wake me with a steaming cup and a kiss, iron our clothes, and get the day started. Tomorrow I will wake in the dark, feed the critters you used to feed, and get myself out the door on my own, because you are sick, and you are not able to get up any longer. And it just sucks . But it is what it is. And we either make the best of the good moments, like days in Yucaipa that turn into lunch in the apple orchards covered in snow a few miles away in Oak Glen, or we can argue and fuss over reality. Tomorrow I will call your sister and brother and ask them to call you. I’ll get you out in the car. And we will relocate common ground to make this new reality more tolerable as it sinks in.