The only time you will likely read anything positive about a long-term-care home, or as it is more often called, a nursing home, is in the obits. Every day you’ll see grieving friends and relatives thank a nursing home for caring for their loved one. Many ask that donations be made to the home’s activity fund or the like. It is clear, reading these, that the experience was positive.
Problem is, most of us don’t read, let alone get our news, from the obituaries.
For most people, the only time a long-term-care home catches our attention is when we read a horrible news story about someone who has been hurt or killed in one, or a heartbreaking story of someone with severe dementia who “escaped” only to freeze to death, alone, in a field somewhere.
And if the initial story isn’t enough to convince you that nursing homes are hell on earth, read the comments. If they aren’t faulting the home for not properly caring for our elderly, they are making sure everyone knows they don’t ever, ever want to live in a place like that. “Note to kids: Leave me on an ice flow – I am not moving into a home”, or “Time for a scotch and a cigar – make it a double – I would rather die than be in a place like that.”.
Double scotch or not – the reality is that 9% of the population will require institutional care of some sort near the end of their lives.
“What the public doesn’t realize is that for some people coming here, this has been the best last few years of their lives.”
Sue MacGregor, the administrator of Extendicare Starwood, a long-term-care home in Ottawa, Ontario, is passionate about her work. Sue has worked at Starwood for 31 years, yet she voluntarily comes to work on Christmas day and most of the other holidays, and she is always in for a few hours on the weekend. Sometimes she works well into the evening if she needs to. She attends virtually every Starwood memorial service held for residents who have died. And, unless she is dealing with something confidential, her door is open. It was open throughout this interview.
Kyle Dobbie, who works in Activities at Starwood, and Sue MacGregor serving up food under the red tent at the weekly summer barbecue
I asked Sue about her biggest challenges and biggest frustrations. She didn’t hesitate. “My biggest frustration is public opinion. So many people believe that long-term care is where you go to die. And this is the tough part, because this is also the truth; it is where you go to die. We are all going to die some day, but, our job, if we do our jobs well, is to make sure that every day of living before that happens is as good as it can possibly be. And that is why I say that for some people coming in, this has been the best last few years of their lives.
You know, there are people who came in on a stretcher as palliative care and yet live for two or three years after that. They really pick up after arriving here and return to doing things they used to do. One reason they pick up is because there are a lot of things to do here, and another is their food and medication arrive at the right times, and in the right amounts.”
“Let’s face it – there is nobody out there who says, ‘I can’t wait until I get to the long-term-care home.’ But sometimes there is no choice … Our homes are our castles but once our friends and spouses pass away and we are not as mobile as we used to be, our homes can quickly become our prisons. And yes, our daughter or son visits, but even if they come every day, what do we do with the other 23 hours in our day? TV is the only entertainment. As I said – our home becomes a prison.”
“We have had people come to the front door and say ‘I would never put my father in a place like this. I wouldn’t put my mother in a place like this.’ And they would leave without even doing the tour.”
“So our greatest frustration is the public perception – going into a nursing home – what kind of a drag is that? But it’s not a drag – it’s wonderful that there is somewhere to go where you are cared for and people are dedicated to making the last years of your life as good as they can be.”
But it isn’t alway wonderful. We have all read the news stories; sometimes residents get hurt or even killed by another resident, or a patient with severe dementia manages to get out and is later found dead. There are even stories of patients who are abused or neglected by staff – the very people who are supposed to protect them.
“It is very bad when a home isn’t good. I want every home to be good, because we are only as good as our weakest link. The public thinks that if a staff person anywhere is caught doing bad things then every place has staff doing bad things – if one place is bad, every place is bad – that’s the general public view. We work very hard to make sure that these kind of things don’t happen, but whenever you have vulnerable people in the care of others sooner or later you will have someone doing something wrong, or not doing what they’re supposed to be doing. Fortunately it is very rare – but it happens.”
The worse the incident the more likely we will hear about it and the worse our opinion of all long-term-care homes becomes. Unless you have direct experience with one or you read the obituaries on a regular basis, your impression of long term care is likely negative. I asked Sue how she thinks public perception could change. What would it take?
“Get involved. Even if you have 30 minutes a week, get involved. See for yourself what goes on – get to know the residents and the staff. You may even decide to apply to be a volunteer, which would be wonderful. We have great staff who work very hard, but there is always a need for people to just sit with a resident, or walk with them in our garden, or help out at a party.”
Pim MacDonald and Pauline in the middle of decorating for the holidays
I had one final question: Would you want to be here?
“Yes – because I love people and I love being in a group. I come from a large family. My best life would always be surrounded by people. “Though …” she laughs “I would prefer a private room.”