There's much to admire in rest homes
I was driving home from work the other day and in the distance I saw a fit, wiry-looking man power-walking purposefully towards me. He was 60-something, wearing a peaked cap, shorts and T-shirt. Nothing too flashy.
For an instant, I thought it was my husband Bill, and my heart turned over. But it couldn't be. Bill has a devastating neurological illness and for more than two years he's lived in a hospital specialising in dementia care.
I continue to have these brief sightings of him in his old life. While they're painful, I hope they never stop, because they remind me of what we once had.
Bill still walks, and fortunately his hospital has a lovely garden with plenty of space for him to do this. It has a lot of other things going for it as well.
Which is what this story is about: a positive personal experience of residential care. It's probably not something you read very often because rest homes, dementia units and similar facilities mostly make the headlines when things go wrong, and they are the subject of complaints.
As with the ones recently reported in this newspaper, the 12 complaints against Waikato and Coromandel rest homes for the year to September 2013, seven of which were substantiated.
The complaints included neglect, fractures from falls, unexplained black eyes, problems with wound care, evidence of physical abuse, and other problems. The report was quickly followed by reassurances about standards and robust procedures from the Waikato District Health Board, which has contracts for long-term age-related residential care services with 55 facilities, and approximately 2400 people.
Such reassurance is important, but if you had a family member who was about to go into a rest home or dementia unit, you may have been rattled by this newspaper's coverage of the complaints. And while it is important that the media continues to report these, it's also fair to say there is a lot of good practice that goes unsung.
So this is my account of the good practice I've seen, and the things I've learned about residential care, since it became unsafe for Bill to live at home.
When his illness became acute, Bill spent several weeks in an assessment ward at Waikato Hospital in the care of skilled staff. At their recommendation, we transferred him to Rossendale Dementia Care Home & Hospital, run by the Bupa group. Bupa is one of the big boys, a global company, and New Zealand's largest provider with more than 50 care homes.
I coped quite well when Bill was in Waikato Hospital, hopeful there might be a miracle solution that would bring him back home. On the day he went to Rossendale, I felt like we'd fallen down a black hole.
One of our sons was with me as we tried to settle Bill in, brighten his room with family photographs and artwork, meet the staff who would be looking after him.
We were numb with the shock of it, the excruciating pain and grief of it, the unspoken guilt of it. Handing Bill, it seemed, into the care of strangers, into a situation that he could not comprehend.
It was the bleakest time, the next few months were a blur, a daily routine of visiting, providing reassurance, trying to understand the systems and routines, and where we fitted in.
On top of this, there was the business of telling wider family and friends what had happened. For a long time, I'd covered up, papered over the cracks of this illness as much as I could, trying to preserve the life we both loved so dearly. Probably mindful of the stigma or uncomfortable feelings around dementia. For some people who didn't see us regularly, it was like Bill was here today, gone tomorrow. How do you start to explain?
I joined a support group for women my age whose husbands or partners also have dementia. This was helpful, as was the concern and support for both of us shown by our family, friends, neighbours and colleagues.
We inched forward. Slowly, slowly, it seemed that it was working for Bill. And if it worked for him, it worked for me.
I began to learn how things operated. I learned to value the kindness, the hard-working staff, the good humour, the smiles for me each day, as well as for Bill.
I got to know other patients, and met family members struggling with the same decisions, difficulties and grief as us; heard stories about their much loved mothers, fathers, husbands, and wives. The network of families became another strength to draw on.
There is a big staff at Rossendale, and it took a while to get to know them, learn their names. Many are new immigrants, doing a hugely challenging job at the low end of the pay scale. I've seen them suffer racial and physical abuse from dementia patients, who sometimes lash out beyond the typical boundaries of behaviour. I've never seen staff retaliate. Instead, they soothe people, distract them, talk to them, joke with them.
They have my utmost admiration. They are heroes. My relationship with them is based on showing respect, and receiving respect, working with them, not against them.
While I appreciate the formal scheduled discussions on Bill's care plan, I also know I can raise any concerns, at any time, with senior staff. It's important to do this, not to let issues fester, not let small things become big things. We're all on the same side here: staff want the best for their patients, family members want the best for their loved ones.
Mistakes happen, but I don't think anyone deliberately sets out to do harm. The rare person who might would be a very bad apple. I've never met one of them. I have, though, met families who I think will never be satisfied with the care. This may part of their grieving, perhaps there is a need to need to lay blame somewhere.
Sometimes I raise concerns with staff, too, because nothing in this business is perfect. It cannot possibly be, by its very nature of dealing with people who are compromised in some way. You'd probably need a one-to-one patient-to-staff ratio for perfection, a totally unrealistic demand on the national health budget.
So there will be things you cannot control. There will be black eyes and bruises, because people with dementia sometimes hit each other, as well as sometimes hit staff.
No matter how vigilant staff are, an incident may happen in a flash, perhaps simply because someone didn't move out of the way in a corridor. Confused residents may give an inaccurate account of what actually went on. Many, Bill included, are unable to speak for themselves. This makes them especially vulnerable, and skilled staff doubly important.
There will be falls. These happen in a flash, too. Bill's illness trapped him early, but many of the residents in his hospital and other facilities are much older, much more frail, more prone to falling.
Stuff goes missing, and while it would be easy to blame staff, it's very likely that another resident has wandered off with it, and it will turn up days later in another room. I've learned not to stress about this.
Sometimes there don't seem to be enough staff to go around. Sometimes there are discussions among families about this, and also about the long-term issue of the low pay rates for the national workforce of carers, the median being around $15 an hour.
There has been wider media coverage of this in recent times, underlining the fact that rest-home care is a highly complex and much-debated part of the health sector, but at present not a priority for greater Government funding.
I think my best advice for people who have a relative going into care is to simply be involved as much as you can. This doesn't mean telling staff how to do their job, or jumping on every small thing that annoys you.
It means getting to know how the place works, getting to know staff as individuals, developing partnership and trust, praising the good things, finding solutions for things that concern you. Maybe becoming a lobbyist on the wider political issues of such care.
Also develop a network of trusted visitors for times when you are away, and don't hold back on taking the grandkids. Ours still have good times with Bill.
When people ask me if Bill is well looked after, I always start with the kindness when I answer. To me, that is more important than anything. Then there is the competent care, the endless patience, the commitment to staff training, the willingness of staff to listen, explain, make changes, provide nice meals, keep the facility well maintained.
There is also the camaraderie. Each time I visit, it seems there is someone who greets me by name, tells me how Bill has been. I sit with him, talk to him, walk in the garden with him, feel his presence. Wishing he was still the bloke in the peaked cap pounding towards me on the city's walkways.
Those in residential care for older people:
2006 Census: Waikato: 2295 Nationally: 27,966
2013 Census: Waikato: 2619 Nationally: 31,899
Carers and aides, Waikato:
2006 Census: 954
2013 Census: 1062
Health and welfare support workers, Waikato:
2006 Census: 105
2013 Census: 102
Source: Statistics New Zealand, customised report and licensed by Statistics NZ for reuse under the Creative Commons Attribution 3.0 New Zealand licence.
Next week: Running a rest home and how rest homes are monitored and audited.