A Caregiver’s Gift

My husband Marty has to take a combination of eight different drugs seven times a day; this is in addition to routine vitamins. Each morning, I set them up in a pillbox so that there is no confusion about the schedule. He manages quite well unless his Parkinson’s, which he’s had for over 30 years, prevents him from opening the individual sections.

It’s a drug’s perverse nature that by alleviating one symptom (tremors), others are created (flailing arms, buckling knees, freezing in his tracks). Because his neurologist regularly adjusts doses, times and occasionally experiments with a new drug, I as a caregiver must be especially vigilant in perceiving changes of behavior.

About five years ago, we were alone at home when I heard Marty ranting to one of his buddies about the Yankees; yet, when I peeked into the kitchen, he was not on the phone. Even though he had experienced hallucinations in the past, I alerted his doctor who then eliminated one of the drugs. Since then, he’s had no further “visions” until this past summer.

He began playing with imaginary dental floss, speaking to “little people,” then shushing me as though I were interrupting a high level conference. Once again, his doctor tweaked his medicine, then asked if I wanted to admit Marty to the hospital. Marty had just finished the “impress the doc” show, a phenomenon in which the symptoms of his condition magically disappear, so we said no and left.

At 6 a.m., he bolted in and out of the bathroom, then crashed into the armoire; he later said he had seen a strange woman standing by the sink. Had I made the wrong decision by not admitting him? Marty was taken to New York Presbyterian where the physician on call, a toxicologist, stopped one of his meds; a drug that had previously controlled his movements for years was now short-circuiting his system.

After 24 hours, his hallucinations stopped. A team of doctors altered his medication and even though no bones were broken by his fall, they insisted he move into a subacute rehabilitation facility for at least 10 days.

When something like this happens, a caregiver functions on autopilot:  rising with the sun, lugging various sundries (tons of diet coke, chips and cookies) and making sure the staff tends to their loved one. I often felt like Shirley MacLaine in Terms of Endearment when she was on the brink of losing it at the nurse’s station. Why is his medication late? Why doesn’t someone answer his call button? It was no secret that the staff longed to discharge me rather than my courteous and tolerant husband.

Unlike most, who under trying circumstances grab a bite here and there, I devoured Marty’s untouched hospital chicken along with the sushi, burgers and pizza we ordered in. My adrenalin was pumping so much I had the energy back home to return calls, pay bills, work at the computer and even straighten out Marty’s closet at 1 a.m. I felt like Wonder Woman, or so I thought.

One evening, I retired early. At 3 a.m., a sharp pain electrified my right side, my foot was numb and my chest felt as if an elephant herd was plotting its next move on it. I dragged myself to the phone, dialed 911 and screamed, “I’m having a heart attack!” Was this the way it was going to end? Alone on a gurney?

As soon as EMS arrived, my symptoms, except for fear and anxiety, dissipated. Even so, they told me to calm down, get dressed and collect my necessities. Ten days earlier, Marty was in an ambulance racing through traffic; now, I was giving it a go. Since when did our marriage vows include “monkey see – monkey do”?

The next day at the doctor’s, I found out I had had a classic panic attack. I was afraid to be alone or go outside, so this seemingly independent woman accepted help from my mother and sister, who moved in for a few days. How could this happen to me? Indeed. A friend who I thought was unrivalled at multi-tasking confessed that he, too, had suffered from them. Just hearing similar stories and knowing that this was not a heart attack calmed me down. My doctor suggested I keep anti-anxiety medicine handy.

This new health concern, along with the stress of Marty’s hospital and rehab stay, only added to my fear of his return. How was I going to handle it? Before this mishap, thanks to a watch that beeps each time he needs to take a pill, he was virtually self-sufficient; navigating the streets and public transportation system of Manhattan was a challenge, but doable. Would he still be able to manage by himself? Would he hallucinate again?  Would he be more likely to fall? More importantly, would I be able to curb my need to control his every movement?

“Don’t run to the phone, don’t carry more than one plate at a time to the sink, don’t make sharp turns. Don’t. Don’t. Don’t.” Turning into a drill sergeant is not what I envisioned as we pronounced our “I do’s” 24 years ago. I keep telling myself that his safety will be secured, but all it does is chip away at Marty’s self-confidence.

“If I fall, I fall. I can’t live in fear of what may happen. Please don’t baby me.” This plea extends to other areas of care as well. For the most part, he assumes responsibility for his own needs, unless he is rushed, agitated or under pressure. Buttoning his shirt, tying his shoelaces and buckling his belt become increasingly frustrating. Good naturedly, he eventually waves the white flag. Last week, he accidentally tore a five-dollar bill in half. I considered fixing it, but then realized that this was a man who once built model ships; he taped the two pieces together as if he were a master craftsman.

So it’s become a day by day process – when to take charge, when to retreat. Through it all, he never complains or misses a chance to smile or joke, “Hey, women even give up their seat for me on a bus!” No support group, no online research about Parkinson’s, definitely no self-help books. I used to see this as denial (why don’t you want to help yourself?), but now I view him as a person who will not give into his disease nor be reminded of it at every turn.

It’s not easy keeping up with his optimism, despite being 13 years his junior; but deep down, I know this is what sustains me through moments of joy and weakness—a gift no one but Marty could give me.