Sisters Vittoria Valentin and Gabriella Cosentino first noticed something different about their father, Bruno Cosentino, about nine years ago.
“It started right around the time he was about 61. I was at the dinner table with him, and he asked me to pass him the salt, and the salt was right in front of him — but he didn’t recognize it, and other signs started popping up left and right. At first, we thought he was just stressed out,” Gabriella Cosentino recalled.
A more serious sign came at the end of 2013, when he was terminated from his job as a tailor at age 62. This was a huge surprise to his family, since he was internationally known for his work, counted several celebrities among his clients and had been featured in numerous publications. “We couldn’t figure out why he was terminated when he had had all the success he had. No one contacted us to say things were off,” she said.
He ended up getting a job at the end of 2014, but soon there were complaints that he was destroying $5,000 suits, tearing them apart. He denied anything was wrong.
“He was coming up with stories, saying, ‘It’s not me — it’s them. They have something against me,’ but nothing was jiving. To hear these allegations and reports that he’s going in and destroying things — and he didn’t know, he was so frustrated — It wasn’t adding up.”
Their mother, Mirella Cosentino, took him to the doctor, and he was diagnosed with early-onset Alzheimer’s disease. Early-onset is defined as dementia that manifests before age 65.
“We realized he couldn’t work anymore. He ended up taking the early Social Security route. We did subsequent doctor visits, neurologists, MRIs. The neurologists further confirmed that it was definitely the beginning stages of Alzheimer’s,” Gabriella Cosentino said.
While he remained in denial that anything was wrong, his symptoms continued to worsen.
“He was constantly misplacing his wallet. His wallet became his security blanket. We would all have to stop doing what we were doing to help him find it, and it just progressed from there. He would put things in odd places and not remember. He would start wandering, and we would have to find him,” Gabriella Cosentino recalled.
Driving also became a serious concern.
“He would get in the car and start backing out of the driveway, and he would hit the garage or hit the gate trying to get out of the driveway, or he would tap a neighbor’s vehicle. He wouldn’t recognize that the light was red; he thought it was green.”
Getting him to accept what was happening was a big challenge.
“Who really has an easy time accepting that they’re sick? But explaining it to someone who is losing their memory is even harder. I remember him looking at me like, ‘Really, that’s what’s happening to me?’ I said, ‘Yeah, Dad, it’s not your fault.’”
Meanwhile, their mother was serving as his primary caregiver, and the stress was taking a physical and emotional toll on her.
“She had diabetes and high blood pressure. She put everything aside as caregivers do, everything just fell to the wayside for her. It became an uphill battle for her to accept that she couldn’t do everything.”
There were many incidents leading up to the decision to get help. “He was literally becoming a toddler again,” Vittoria Valentin recalled, “She would be chasing after him or he would be chasing after her. He would start urinating around the house, and my mom couldn’t figure out what was happening. She didn’t acknowledge that it was urine on the floor — but then you smell it.”
“We would tell her, ‘Mom, you can’t do this.’” But finances were a strong motivation for Mirella Cosentino. She didn’t want to see all the money their father had worked so hard to earn be consumed by his care. She strongly resisted the idea of sending him to a nursing home, where the care could cost $10,000 a month, eventually accepting the idea of having aides come to their house — a cheaper proposition at around $2,000 a month.
But it wasn’t a perfect solution. “My Dad had outbursts of physical aggression. He would actually try to lash out at our mom, and the aides felt threatened because they saw that aggression,” Valentin said. “She would say, ‘I’m trapped, I can’t even get someone so I can get to the store.’”
Then in March 2020, just before COVID-19 became a worldwide concern, Mirella Cosentino found an aide who seemed to work out well. A couple of weeks later, in April, she said she wasn’t feeling right — eventually she blacked out and fell down the stairs at their home. The police had to break down the door to get in to help. While she was in the hospital after the fall, she was diagnosed with COVID.
“The hospital only kept people for six days at that point due to the high influx of people, but she was unable to really stand and was slurring her speech. When we brought it up to the nurses, they said it’s part of COVID,” Valentin recalled. “On the sixth day, they sent her to a rehab facility to help her with her walking, but they wouldn’t touch her since she was COVID-positive. She just laid in a bed. They began to tell us she was unresponsive, and we insisted they send her to Nyack Hospital ER. That’s when they discovered she had had a catastrophic stroke.”
The two sisters now found themselves managing care for both of their parents,” a situation made that much more difficult in light of COVID.
“They even told us not to go out, don’t go near the elderly, because you could be carrying COVID and not know it. So we were stuck. We hired a 24-hour-a-day aide. It ended up being too much, caring for our dad in the house. We were told our mother wouldn’t survive.”
“She lived 10 months after the stroke. She did start to speak a month or so after the stroke, so we thought there could possibly be hope. She went to two or three different rehabilitation facilities. We don’t know what the outcome would have been (had it not been for COVID), but the whole process was dehumanizing. We couldn’t even be in the room with her. It was FaceTime or window visits. The only time we were able to have an exception was Hospice — and even then, we had to be tested for COVID,” in order to visit, the sisters recalled.
“We had the aides at home with Dad; he finally got into the nursing home she wanted him to be in. By the time she used up her Medicare, we ended up putting her in the same room with him at the nursing home. We had to sign off on waivers, we accept responsibility for putting them together,” the sisters said. “They were together at Allendale from the end of Sept. 2020 until Mom passed in March of this year. He passed away on Nov. 2.”
“We requested that he go into Hospice this year after our mom passed. He was declining to the point where we thought it was appropriate. He actually knew when Mom passed. He was with her in the same room. He was screaming — and then he was very quiet after she passed,” Vittoria Valentin said.
The strain of caregiving was multifaceted for the sisters, who said they had to become experts in a variety of fields in a very short time in order to make informed decisions for their parents.
“We literally had to become doctors, nurses, lawyers in a matter of 18 months. We had to wear to so many different hats to preserve everything that they had worked for, and we had to become semi-experts to do that. There is no guide on how to do this. We didn’t know about Medicare; we didn’t know about eldercare. Thank God we had power of attorney,” the sisters said.
The financial impact of the disease was devastating, as the care consumed their parents’ estate. “My dad’s entire retirement got depleted in one year being in a nursing home.” They said they felt that more legislation is needed to protect caregivers and families of those with Alzheimer’s.
“The laws definitely have to change. People are painting an inaccurate picture of what this is. It’s very raw, very painful — not just for the person who’s suffering, they’re not knowing what’s going on. To not know how long it’s going to be for — it takes a big toll,” Vittoria Valentin and Gabriella Cosentino said.