Rare disease leads to care at Nigel House

Nancy McFarland’s diagnosis with a rare genetic disorder meant a move to Nigel House, where she can receive 24-hour care.

The 35-year-old has been at the Saanich complex-care centre for a year and a half after being diagnosed with late-onset TaySachs disease, which is marked by a progressive deterioration of mental and physical abilities.

Fewer than 1,000 cases are seen each year in Canada.

Her husband, Robert McFarland, said the attention offered at Nigel House was what Nancy needed when it became apparent that at-home care wasn’t working.

Visits from him and their five-year-old daughter, Stephanie, are an important part of life for her there, he said.

McFarland said he supports efforts to build a new Nigel House to replace the current facility, which dates back to 1977 and has a number of deficiencies, such as bathrooms and hallways where wheelchairs don’t fit.

“The residents there all have challenging conditions, so I think there’s a requirement there for a higher level of care than you maybe would have in a regular home,” he said.

McFarland said extra common space for residents is one of the main things he is looking forward to in the new building, which is the subject of an ongoing fundraising campaign called New Home for Nigel House.

“There’s not a large area for them to get together,” he said.

Despite the state of the facility, Nigel House recreation therapist Rob Richter said there is something there that is as good as ever — the food.

“The residents are very fortunate,” he said. “I’ve worked at five or six different facilities and this is by far the best food. Everything’s done in-house.”

McFarland said that Nancy, the youngest resident at Nigel House, took to the facility better than he thought she would.

For her part, Nancy said she likes her surroundings and enjoys playing games with her fellow residents.

“She’s really come along and she’s definitely much more involved in the activities than she used to be,” Richter said. “She came from her family, so she wasn’t used to living in this big group situation.”

The thing that really stands out about Nancy is the pride she takes in her appearance, he said.

“She’s the best-dressed person here, I would say. She’s always very smartly dressed.”

Activities she enjoys include bus outings to Elk Lake, where residents like to hang out at a dock on the side of the lake opposite the highway.

“It’s a great spot to pull up the bus and just sit and watch people,” Richter said.

The residents, many of whom have suffered head injuries and other medical conditions, are fortunate to have Nigel House, he said. “They’re lucky to have a place like this to go to.”

The Broadmead Care Society, which oversees Nigel House, is spearheading the campaign for a new facility, with a goal of raising $3 million toward the overall $45-million cost. The plan is for completion in two years with room for 41 residents, an increase from the current 26.

There will also be 37 assistedliving units and 10 affordablehousing units.

The society is partnering in the project with B.C. Housing, Island Health, the District of Saanich and the Capital Regional Hospital District.

To make a donation to the Nigel House campaign, go to givetonigelhouse.com.