The Shriver Report – Emotional Roller Coaster

Special Edition

Emotional Roller Coaster

I was calm when I heard the diagnosis from the staff sitting around the table at the University of California, San Diego, Alzheimer’s Center. It was no surprise. My husband Ben was a very healthy 84-year-old in 2005, but his mind had been slipping away for several years. In the back of my own mind, I dread what lay ahead.

I hoped to care for Ben at home until he died. That worked for a while, but it was tough. He slept away hours of the day, waking up drenched and befuddled. He resisted my efforts to get him to change pajamas or shower or eat. He was resistant and belligerent. He sneered when our younger daughter came over, accusing her of planning to steal our house. He screamed mercilessly at my older daughter’s little dog he used to love. He grew agitated and disoriented, saying he had to get out of there, had to go home. He was at home.

In the early months, I tried running out to do errands while he was home asleep. But the few times he woke up alone were so frightening, I stopped. I hired a caretaker to help out, but that didn’t work either. Ben tried to hit the young man, one day locking him out of the house. The caretaker quit. I gave up. I quit the community theatre company where I’d acted for years. I quit my job in sales. And I stopped going to mass. I was officially housebound.

We had always had a volatile relationship, Ben and I, but through more than a half-century of marriage, we always communicated—at high decibel levels sometimes, but it was communication. That’s why it was so hard to accept that I just couldn’t reason with him. Often frustrated, I wound up yelling at him. Of course, he yelled back.

One particularly explosive day, I couldn’t take any of it anymore. I yelled and cried and accused him of slowly killing me with his Alzheimer’s. This time my daughters were witnesses, and they insisted it was finally time for me to relinquish my caregiver role. Once again, I gave up. We placed Ben in a board-and-care facility that week.

The girls would go visit Ben occasionally, but the grandchildren visited even less. Their Papa—who had bestowed on them all the affection and attention he withheld from his own children—didn’t resemble this 95-pound, confused old man in the bed. And he couldn’t figure out who they were, either.

I went regularly, of course, out of guilt and out of love. Sure, Ben and I had slugged it out verbally all those years, but we had so many good times, too. We loved to travel together, we loved Sinatra and the Rat Pack. We loved to dance at our many relatives’ weddings, and we loved playing cards at home with our closest friends until the wee hours.

Ben and I had always laughed as hard as we had fought, and I was unexpectedly reminded of that one day, as I was getting ready to leave the facility. I was looking around for my purse, when Ben asked me with his trademark droll sense of humor, “Are you leaving behind anything besides me?”

The next year and a half was endless. One day, my daughters found him propped up in his wheelchair in the big kitchen, the caregivers trying to feed him. The girls took his hands and they cried, as their father smiled weakly and whispered, “My daughters.” There was no more anger, no more confusion—just sweetness. They still hold on to that memory.

In those last months, I told Ben stories about our good times together and the people we shared our life with. I told him about the new neighbors and the election of our country’s first African-American president. I told him I loved him, that we all loved him.

Recently, I went through Ben’s closet to pack up all his nice clothes to give away. I cried like I haven’t cried in months. It still strikes me so strange that this man who stood beside me for so long, so handsome in those same suits, is no longer beside me. But I’m also so grateful that most of my memories of Ben are from the days when he was strong and funny and healthy.

I’ve been back at work for more than a year now. I’m acting again and attending mass every Sunday. One of my prayers is that my family never has to go through that again. I pray that I may die quickly from anything other than Alzheimer’s.

Rosalie Ingrande Asaro is a contributor to The Shriver Report.
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