It looked like a four-star hotel, with flowers in the foyer and art on the walls, but the problems began almost as soon as Bill Lawrence’s mother moved into her private nursing home.
Bad food, negligence around medication, and a poor standard of care which led to his mother being hospitalised for dehydration meant that the period she spent in the home were, the retired businessman now says, the most stressful time of his life.
So angered was Bill by his experience that he wrote a book on it, When the Unacceptable Becomes the Norm; Choosing A Care Home in the 21st Century.
Published last weekend, the book aims to provide a guide for people trying to source care for an ageing parent while knowing little about the care sector.
The issue is increasingly significant for Irish families. CSO projections show the number of elderly people in the population is growing rapidly — as is the projected rate of dementia.
In 1961, there were 315,000 people aged 65 or over, here. By 2011, that figure had increased by 70% to 535,393, and, by 2046, it’s expected that the number of people over 65 in this country will have reached 1.4 million. Meanwhile the number of people with dementia, of which Alzheimer’s disease is the most common form, is expected to rise from an estimated 48,000 in 2015 to around 140,000 by 2041.
In 2007, Bill Lawrence — the name is a pseudonym he adopted to write the book —was informed that his 96-year-old mother, who had a degree of dementia, was no longer capable of living alone.
Bill moved her into what he called a “new, attractive, purpose-built” facility in the UK.
“It looked super,” he recalls. However, almost immediately, he and his wife became concerned.
When nursing home staff wanted to change his mother’s medication regime, he referred them to her GP and was assured they had consulted the doctor — only to hear from the GP that she’d never spoken to anyone from the home about his mother. He and his wife struggled with an array of problems, including poor quality food, carelessness about medication, and a failure to ensure she was adequately hydrated — at one stage during her stay, she had to be hospitalised with dehydration.
Bill’s mother passed away in 2012 at the age of 102, after six years in the facility — by which stage, despite the problems, her care was costing £28,000 annually.
Bill wrote and self-published the book as a guide to other people trying to source the right care for an ageing parent, he recalls, adding that he and his wife initially had very little knowledge about the sector.
For most families, placing a loved ones in a care home is not something that they’ve been planning for — it usually happens quickly in the wake of a crisis, says Mary Burke, a registered nurse and director of care at Killure Bridge Nursing Home in Co Waterford.
About 80% of residential admissions are people who arrive in a nursing home from hospital following an accident of some kind, or as a result of general physical or mental deterioration, says Ms Burke.
So like Bill and his wife, most people know little about the sector until the time comes to find a place for a relative. However, standards of care and training, as well as the physical environment of Irish nursing homes, have improved since HIQA was put on a statutory footing in 2009 says Tadhg Daly, CEO of Nursing Homes Ireland, the representative group for private and voluntary nursing homes. That organisation is behind Nursing Homes Week, which runs all this week until Monday June 5.
“There is independent regulation of both public and private nursing homes, and standards have improved generally,” Mr Daly observes.
However, both he and Ms Burke agree that there are things that families can do to make both the transition of a loved one, and their life at the chosen care facility, happy — starting with the selection process.
Check Hiqa inspection reports on the facility carefully, advises Ms Burke, and visit potential homes.
Be alert to the demeanour of staff — are they warm and friendly? Be conscious of the residents — are they clean, and well-dressed? Are they bright-eyed and active at 10am — or asleep in their chairs?
Talk to other visitors you meet at the facility, to people you know who already have relatives in the home — and ask your GP. Remember, says Daly, you’re not choosing a home for yourself — step into your parent’s shoes to see the facility through their eyes.
For Bill, selecting the home was only the first of many challenges:
“We had enormous complaints about the food for example,” he recalls, adding that a district nurse once warned him that “every nursing home resident needs an advocate — somebody to keep an eye on what is happening and be ready to complain when necessary”.
The price of keeping your loved one in a care home is being in a state of “eternal vigilance”, he says — you must be on top of everything and be ready to complain.
Before you decide on a potential care home, visit many times and at different times of day, advises Bill, including mealtimes and Saturday evenings.
If you call at 9pm and find all the residents in bed it’s not a good sign, says Ms Burke — it means care at this home is staff-focused rather than centred around the needs of residents. How flexible or rigid is the schedule? Can mum have a lie-in? Can she stay up until 11pm if she wishes?
Arrive at mealtimes, says Bill, and watch how the food is serviced. Is it slopped on a plate or presented in an appetising manner? Elderly people may often not be inclined to eat — so watch to see if staff gently try to persuade them or whether they shrug and take the plate away.
Talk to, among others, the catering manager, housekeeper, and the activities manager, he advises.
“We didn’t know a lot of these things because we didn’t know we needed too. You want a caring environment and you need to satisfy yourself that it is a caring environment,” he warns.
Don’t expect to be happy with your first visit to a home, says Ms Burke — it’s likely to be emotional because it is the first step in a major life transition.
However, she reassures, on subsequent visits, you may find yourself feeling more positive about the facility.
Take the time to observe how the staff interact with residents, she advises, adding that other warning signs include the management’s response to accidents — are spills cleaned up rapidly? Is the furniture well maintained or torn and tatty?
Check what recreation will be like. What kind of activities are available to male and female residents? Is there a library or garden, or access to one? Are residents encouraged to get fresh air? Can they bring possessions from home or even keep a pet?
If possible, says Mr Daly, encourage the future resident to visit the home. Ensure the facility is nearby so that you can visit often and make a point of remaining engaged with your loved one following entry to a nursing home.
“A good nursing home will welcome that because it needs to know if there are concerns — raise concerns and raise them early,” he advises.
Fair Deal scheme
The Nursing Homes Support Scheme, operated by the HSE, is also known as the Fair Deal scheme;
It provides financial support to people who need long-term nursing home care;
Under this scheme, you make a contribution towards the cost of your care and the State pays the balance for care in approved private nursing homes, voluntary nursing homes, and public nursing homes;
Your financial situation is also assessed to see how much you will have to contribute towards your nursing home fees. If your contribution is less than the amount of the fees, the HSE will pay the rest. Assets, such as savings and property, are taken into account;