Together since their teens, Alzheimer’s strips couple of ‘golden years’
Rick and Carolyn Collins celebrated their 50th wedding anniversary in September.
It was a huge milestone for the Hamden couple, who have been together since they were teens. But it was a bittersweet anniversary. For one, the couple’s celebration was tamed due to the COVID-19 pandemic, but there was another deeper reason the anniversary was tinged with sadness.
“My wife had no idea it was our anniversary,” said Rick Collins, 69.
Carolyn, 68, has Alzheimer’s disease. She was diagnosed in 2014, but Rick said her symptoms started as early as 2012. Carolyn is in the late stages of the illness and is unable to do anything for herself, including walking or talking. She also doesn’t recognize Rick or other family members.
Every day, Rick said, his heart breaks, both for himself and for his wife as she declines.
“We’re supposed to be in our golden years now, but we lost that,” he said. “She lost that.”
His experience, though painful, isn’t uncommon for caregivers of those with Alzheimer’s, said Carolyn DeRocco, vice president of programs and education for the Connecticut chapter of the Alzheimer’s Association.
According to the association’s 2021 Alzheimer’s Disease Facts and Figures report, there are 80,000 people 65 and older living with Alzheimer’s in Connecticut, and there are 142,000 state residents serving as unpaid caregivers to those with the disease. Alzheimer’s is a degenerative brain disease and the most common form of dementia.
To help address the issues faced by Collins and others who care for those with Alzheimer’s, the association is sponsoring its 23rd annual Dementia Education Conference April 7-9.
The first two days of the conference, which is virtual this year, are for dementia care professionals and the last day is a free session for caregivers. The caregiver event will address such topics as managing emotions while caring for loved ones with Alzheimer’s, and making sure caregivers have proper support.
For many caregivers, DeRocco said the pandemic has been particularly difficult, because it forced the temporary closure of many adult day care facilities, senior centers and other places caregivers use for support.
“The caregiver who is home is doing all of the caregiving and that can be difficult, because they are not getting any respite,” she said.
Collins said he has felt “isolated” during the pandemic, particularly when the adult day care center he and Carolyn use closed for five months in the early days of the crisis. The pandemic also meant that visits from their children and grandchildren were less frequent.
“I lost all physical contact with my family,” Collins said. “You can still talk on the phone, but I lost that embrace.”
Even now that his wife’s day care — Clelian Center in Hamden — has reopened, and she spends five days a week there, Collins has to drop her at the door instead of going inside.
“I used to be able to come in and talk to my wife’s nurses,” he said. “When they knew I was having a hard day, they gave me a hug. I can’t do that anymore.”
COVID has taken other tolls on Alzheimer’s patients and their caregivers as well. According to the Alzheimer’s Association report, there were at least 42,000 more deaths nationwide from the disease and other dementias in 2020 compared with averages over the previous five years — a 16 percent increase.
In Connecticut, there were 382 more deaths from Alzheimer’s and dementia in 2020 compared with averages over the past five years — an 11.5 percent increase.
DeRocco said there are reasons why the Alzheimer’s population might have been more vulnerable than usual, including that some patients could have been resistant to safety measures intended to guard against COVID.
“Somebody with Alzheimer’s or a related dementia may forget to wash their hands or not understand why that’s important,” she said. “They might not understand why they need to wear a mask or why social distancing is important.”
For the Collinses, some of the pandemic hurdles have subsided. Not only has day care reopened, but they have also been vaccinated against COVID as have their children. And the couple receive regular visits from a certified nurse’s aide.
For Rick Collins, the pandemic hasn’t been as unbearable as watching the love of his life grow distant from him.
“When I look in her eyes a lot of the time, I see a blank stare,” he said. “But sometimes I see a light in her eyes. It’s almost a look in her eye that she might be remembering something. It’s so close and she really can’t get a grab on it. And then, as quickly as it comes, that’s how quickly it goes. It’s very, very difficult to deal with.”