We lost him a little at a time. In 2000, my Dad, then 80, was diagnosed with Alzheimer's disease, and it began: He moved off ever so slowly, calling back at us as he went, trying to keep us in his sight.
For the most part, he was joyful, although keenly aware of what was happening to his mind. He smiled, sang, and danced the Irish jig; often all it took was a ride to the grocery store to delight him, or attending morning mass, or a stop at Bruster's for butter pecan ice cream. A successful, self-made businessman who ran his management consulting company in Pittsburgh for over 30 years, he showed us how to bravely confront a future with uncertainty and little hope. He told us how much he loved us as often as he could. And we, in turn, were lovingly resolute about keeping him at home with Mom as long as possible.
By the summer of 2007, though, Dad had become confused, scared, and unwilling to take his medication. Finding in-home care was a struggle; as he became more agitated and leery of help from strangers, he would punch out and snarl. Someone would show up one or two times and then not again; many times a call first thing in the morning left Mom to cancel her plans. My brother, Jack, who lives nearby, would arrive each evening and coax Dad upstairs, then struggle to get him—fighting all the way—to swallow his medicine and undress. Sometimes, he got up in the middle of the night and would start down the stairs before Mom woke up and found him befuddled, frantically searching for something he could no longer put into words. During the day, when she wasn't watching, he would slip out silently and head down the road.
An adult day-care program for people with Alzheimer's gave her a few hours a week to catch her breath, but her fatigue, the constant worry, and the stress soon grew impossible for the four of us kids to ignore. We had to look out for her health, too.
Searching for a home away from home
We were distraught at the realization that he needed to go. Much as we wanted to keep Dad with us, he wasn't safe at home, and Mom, though 10 years younger than he, was wearing out fast. Beds for Alzheimer's patients were hard to find, so we consulted a physician who is an Alzheimer's specialist, someone who had cared for Dad at various stages of his illness. He recommended Sunrise of Fox Chapel, a senior assisted living facility in Cheswick, Pa., whose "memory care unit" is designed specifically for Alzheimer's and dementia patients.
As it turned out, Dad probably required more care than an assisted living home could provide, but we didn't know the difference between assisted living and nursing home care. Now we know that an assisted living facility such as Sunrise provides care for seniors who need some help with activities of daily living, yet wish to remain as independent as possible. It aims to foster as much autonomy as the resident is capable of. Most offer 24-hour supervision and an array of support services but give the residents privacy and space. In general, nursing home residents require significantly more care, including help with getting around, eating, bathing, and taking medication.
Sunrise was located about 15 minutes from my parents' home in a suburb of Pittsburgh. It was small—61 residents—and seemed a warm, friendly place, with a garden courtyard, small living rooms, cozy dining areas, and private bedrooms with windows. The resident labradoodle, Hudson, plus a couple of cats and some parakeets, appealed to us since Dad had been a huge pet lover. Sunrise had something else in its favor. Jack's house, where he also works, is just 2 miles away. My sister and I both live several hours from Pittsburgh, and although my brother Mike lives nearby, his work/family schedule is not as flexible as Jack's. Dad was admitted, and we were advised to bring clothes that he liked and to decorate his room with personal items to make it as comfortable as possible. Because Sunrise does not accept Medicare or Medicaid, this would be a private-pay deal: some $4,800 a month out of pocket.
Jack visited twice a day, at random. And he became friendly with a few of the nurse aides, figuring that knowing staffers and being engaged would translate into more attention for Dad. Still, sometimes when he arrived, no one knew where to find Dad. My brother would eventually catch sight of him walking the hallways alone. Or he would find Dad locked in his room. When he asked why, the answer would often be that perhaps Dad had locked himself in. Mom went most days at first, but it became harder and harder for her to visit. She was frightened when he would grab her arm tightly and twist it, showing no signs of recognition. The rest of us visited as frequently as we could.