The reality of aged-care for families: in last month's Kai Tiaki Nursing New Zealand, a caregiver and a nurse manager of an aged-care hospital and rest-home described their work. This month, we hear from four family members about their perceptions of the care their loved ones are receiving or have received.

While many aged-care facilities around the country struggle to attract and keep their nursing and caregiving staff, the families of those they care for often feel like the meat in the sandwich.

Sheila Sykes' husband Donald was admitted to the hospital wing of Palmerston North's Brightwater Centre two and a half years ago, suffering from Parkinson's and Lewy's Body Disease. Sykes visits her husband every afternoon, but over recent months she has become increasingly concerned at the staff's demoralised state and the numbers of resignations. Seeing her husband sitting in a wheelchair all day after over 60 years of happily married life is distressing for her. These feelings are intensified when she feels her husband is not getting the care he needs or deserves.

"The staff are leaving in droves because they are simply not paid enough," she said. "The woman working in the laundry has now gone and has been replaced by a student, who is very nice, but there are ongoing issues with clothes going missing and too many pairs of odd socks. It is quite upsetting to arrive at the hospital and to find Donald lying on the floor by the toilet. He can't stand on his own but will try to stand if he is left for too long. These problems are caused by understaffing and are a real safety concern.

"I have written to Presbyterian Support in Wellington three times, pointing out the understaffing and pay issues, but all I have ever received in return are what I call 'cotton wool' replies. Understaffing makes it so very difficult for the patients, all of whom are either bedridden or in wheelchairs. It is sad the staff have no time to talk to the patients, except when they are involved in some kind of procedure like moving them."

Sykes describes the weekends as the worst when it appears there is only one registered nurse (RN) rostered to cover the two hospital wings, dementia unit and small rest-home. "Some staff are doing double shifts, but working from 7am to 7.30pm is just too much, especially when the work is so hard and they are on their feet all day. There are some very good caregivers, but most staff are nearing the end of their rope. I believe it's time the Government got its act together and sorted out the aged-care funding issues."

Deteriorating care after hospital admission

Jane Harris's mother has been in care for the past 13 years. She had no concerns for the quality of her mother's care at Auckland's Lady Allure Village white her mother was mobile and living in her own room, but when she was reassessed as needing hospital-level care, a very different scenario emerged.

"My mother was very settled during her first ten years at the village, even though she had the beginnings of dementia and was quite difficult to manage at times. However, everything changed after a fall and admission to North Shore Hospital where she was reassessed for hospital care.

"The change in the quality of care was evident literally from day one: on her first day in the Lady Allum hospital a family member found my mother lying under the bed, moaning for help. Obviously, the sides of her bed had not been put up as they should have been. This might have been due to short-staffing or staff not reading the care instructions for my mother." Although the caregivers were kind, Harris believes cultural and language difficulties experienced by more recent staff members, many of them from the Philippines or Eastern Europe, affected the quality of communication and care. A downturn in standards also appeared evident when Presbyterian Support Northern sold the home to what is now Qualcare Holdings.

"I became increasingly worried about what I perceived as neglect of a group of patients who were unable to speak up for themselves. I hardly ever saw an RN during my visits from Wellington and the nursing station was always empty. I could never find anyone in authority to talk to about my mother's condition. She often smelt when I visited and her wheelchair was always filthy. If she hadn't had the support of several family members who visited her frequently, helping out at meal times, I believe her situation would have been even worse."

Harris also noticed the high turnover of staff. "I would visit about four times a year and I never saw one face I had seen the time before. Are the pay rates and working conditions just too bad to keep staff for long?"

Family members did manage to arrange a meeting with the hospital nurse leader to discuss concerns about their mother's care and worsening condition, and a number of strategies were put in place. However, they subsequently discovered that none of the decisions made on that occasion were recorded on her file. "It just looked like window dressing to me." Over the years, many of her mother's possessions like a valuable opal ring and a fine china table lamp stand went missing, particularly when her mother moved rooms. How or why this happened, she never discovered. Only one of three new nighties Harris had bought her mother one Christmas was there when she visited a few months later. "These things might sound petty, but they are frustrating for families and important if you want to retain their good will. However, the loss of material things is minor when compared with emotional and physical neglect."

Move to smaller hospital

At the beginning of this year, Harris and her brothers decided to move their mother to Belmont Hospital, a much smaller institution than the Lady Allum Village. "So far, we have been very happy with the improvement in our mother's care. Many of the staff have been at Belmont Hospital for some years and the nurse manager, who interviewed us when my mother was admitted, really wanted to know who she had been in her earlier life. I was very moved by that. Despite her advanced dementia, she was still seen as a person. It was of concern to discover the hospital has now been bought by Guardian Healthcare, but we are hoping things won't change for the worse."

Harris has a great deal of empathy for those who care for the most dependent elderly, many of whom have little grip left on reality. "It must seem a totally thankless job at times." She believes the pay rates and lack of training for caregivers are a real disgrace. "Without a proper career structure, how will these institutions be able to keep good staff? You need more than a sense of dedication to stay."

Increasing use of bureau staff

Daphne Entwistle's mother has recently moved into hospital-level care at Woodchester Hospital in Christchurch. She had previously spent about 17 months in the rest-home area, following a stroke, and is now having fairly regular transient ischaemic attacks. "Because of my mother's assets, she doesn't qualify for a subsidy for her care, so pays nearly $2800 per month. For that amount, you would hope for very good care, but they simply don't have the staff to deliver it. They now seem to be using more and more bureau staff, who are often young, newly arrived in New Zealand and of course don't know the patients and their particular needs. My mother's condition means she is only allowed to take thickened fluids, but not all the bureau staff seem to be aware of that and will try to give her her medication with just water. This can be very dangerous for her.

"Recently I attended a support meeting of family members and all of us had the same complaints--the use of bureau nurses and ongoing problems with the washing not being done well and not being returned to the patients' rooms. There are some very good caregivers working there but there are others who don't seem to care too much. Often I see bruises on my mother's arms and things like cuts don't always get reported, especially when the bureau staff have been working."

Hospital provides good palliative care 

Some families, however, have nothing but praise for the care their loved ones have received in hospitals or rest-homes. Jacqui Iggo's mother Irene Scott spent six weeks at Woodchester Hospital receiving palliative care for cancer. Recently the hospital won a contract from Canterbury District Health Board to provide six palliative care beds, as numbers needing palliative care in the Canterbury region have outstripped present resources. "The care my mother received at Woodchester was absolutely excellent," said Iggo. "What was most impressive was how proactive the charge nurse Heather Driessen was in anticipating any health problems. She immediately recognised issues, like a bladder infection, that had not been picked up when my mother was in Christchurch Hospital. I felt secure that the staff were monitoring her condition and managing her pain very well."

Iggo was also grateful for the welcome the staff gave her husband and two young children. "They felt very comfortable visiting their grandmother and were given a free rein around the place. They would spend time outside helping the gardener or come back from the kitchen with icecreams. The caregivers knew our names and all made a big effort to make us feel comfortable. "The nurses, particularly Heather Driessen, were also very forthcoming with information about my mother's condition and any changes in medication. I was able to understand what symptoms were related to medication changes and what to her failing health. This took away a lot of my fear."

During her mother's last week, Iggo stayed overnight with her mother and found this a very healing experience. "After she died, I helped the nurse clean and dress her. Earlier on in her care I couldn't have imagined wanting to do that, but it felt a very natural thing to do and I am grateful for the opportunity. For our family, having our mother in hospital for the last six weeks of her life was a very positive experience."