Brian Crow does not describe his wife’s move into long-term care as a joyful occassion.
Marilyn has dementia. Her health is still declining. Some days, he said, she can remember an old song or a sentence from the past. Other days, she may not know him.
But when a room became available at Radiant Care’s new Pleasant Manor building in Niagara-on-the-Lake, Brian did feel relief.
Not because the decision to have her move there was easy. Because the care was better than what he could give her at home.
“I don’t look at going to a long-term care home as a happy thing,” he said. “What gets better is the care she gets.”
That is the message Crow hopes reaches other spouses and children facing the same decision.
“Don’t feel guilty that you can’t provide the best service,” he said. “The long-term care home provides a better service.”
Still, Crow knows the guilt can come.
So can the second-guessing that tells families they should have been able to carry more than anyone could carry alone.
Long-term care has not changed the course of Marilyn’s disease. Crow does not try to soften that. But it has changed the care around her.
Before Marilyn moved into Pleasant Manor, Crow cared for her at home with support from personal support workers. At Pleasant Manor, he said, Marilyn is surrounded by steady, compassionate care from staff trained to meet her changing needs.
“She gets far better care than I could ever give at home,” he said.
Crow said Pleasant Manor staff helped the home feel more familiar by walking him through the paperwork, assessing Marilyn’s needs and helping set up her room with pictures and personal items to make her feel more at home.
They also took time to understand the details of her daily life, from nutrition and activity to sleep, mobility and medication.
“To me, this one is one of the best (long-term care homes), based on what I’ve heard and experienced,” he said.
The new 160-bed long-term care home welcomed its first residents in December and marked its official opening with a ribbon-cutting ceremony May 21.
“(Radiant Care) is a culture, an attitude,” Brian said in his remarks at the ceremony, as he spoke about the care Marilyn has received since moving into Pleasant Manor. She moved in Jan. 16.
“Every time someone walks by her, it’s, ‘Hi Marilyn.’” Brian said. “And they have a smile.”
“I walk in and staff are saying, ‘Hi Brian.’”
Crow said that is one of the small signs Marilyn is known at Pleasant Manor, not just looked after.
A member of the Rotary Club, Brian lives in Chautauqua and said friends, neighbours, family and fellow Rotary members have helped carry him through the transition.
“One of them said to me, ‘Brian, how are you doing?’ and I said, ‘Well, the stress I’ve had for the last couple years has turned to guilt,’” he said.
A friend from Rotary stopped him when he said that.
“You’ve done nothing, absolutely nothing wrong to feel guilty about,” Crow recalled him saying.
He has come to think of the feeling differently: “Maybe it’s more like survivor’s guilt.”
Crow knows three other Chautauqua residents with loved ones at Pleasant Manor.
“We’re blessed to have a place that provides the care it does,” he said. “(One) that is close.”
Having Marilyn at Pleasant Manor also means she remains close to the community that supported him throughout all of this.
“In Niagara-on-the-Lake, I never felt that I couldn’t get help,” he said.
People ask how he’s doing. Former nurses offer their phone numbers. Neighbours bring food.
“You have a real bad day and you come home and somebody delivers dinner for you,” he said. “Turkey soup, or pies, things like that.”
Crow said that support has made the hardest days feel less lonely.
“The best thing I’ve had in my life is friends, neighbours and family to get me through all this,” he said. “And continue to do so.”
Brian said he credits the health-care system for making long-term care homes available to families like his.
It is not a perfect system, he said, but it has given Marilyn care, kept her close to home and helped him understand something he hopes other families will hear.
Asking for help is not the end of caring for someone you love, he said. It is another way of doing it.
