Kilkenny woman pleads for adequate staffing of home support services

Sitting in a cosy, family living room in rural Kilkenny, the sun streaming in the window and the spring breeze rustling the leaves on the trees outside, it would be easy for the casual onlooker to assume this family has an idyllic, rural life.

An elderly lady sits comfortably on her chair, her loyal dog close by, as does her adult daughter.
But a closer look shows that the daughter has a file of letters and printed emails in front of her, notes on phone calls, contact names, calendar schedules.

This is the life of a family carer; a life that, for this small family, has become one of begging, pleading and fighting for services they not only need - that they have been approved for by the HSE but can’t have because of a massive dearth of home help staff.

The story of this Kilkenny family is one that is repeated around the county. It’s the story of the efforts that have to be made to ensure the minimum services are provided so that an older person can stay in their own home as long as possible - a cited aim of the HSE Home Support Service for Older People.

This family’s fight began in earnest in 2019, when the older lady had a fall. For about a year and a half before that the daughter had been concerned about her mother’s cognitive decline. She was still doing her domestic tasks and looking after the animals, but ‘not well.’

However, when the daughter highlighted her concerns to the family GP she felt ‘fobbed off’ and was given no help. Formerly an independent woman, the older lady had even stopped driving.

After her fall, the mother spent a night in hospital and a slow decline became apparent to her daughter. There were more short hospital stays for illnesses culminating in a four-week stay in August of that year.

An occupational therapist assessed the older lady before her discharge and said she was okay to go home. But on the insistence of her daughter she was given a place in a step-down care facility.

The mother was there for just one day when staff contacted the daughter to ask about her ‘cognitive issues.’
The mother has since been diagnosed with Alzheimers and Parkinsons.
She needs help getting up and getting dressed, showering, walking outside, and her meals must be made for her.

It was November that year before the family were approved for a home care package by the HSE, but there was no funding available so they ‘went on a list.’
In January 2020 another letter said the older lady was approved for home support for a shower one day a week, and was still on a list for daily calls.
It was May before the daily calls began, Monday to Friday, in the morning only.

After the older lady had another fall at Easter the family was approved for a carer to come in to give her two showers a week and three shorter, daily calls.
Around this time a nurse at the St Luke’s geriatric emergency department saw the stress the family was under and referred them for lunchtime calls.
The daughter said when this was approved ‘at last I knew someone was coming in and she was not going to be left to herself’ all day.

In April 2022 the family was approved for weekend calls. But no carer has been coming to them at weekends since last December - because neither the HSE or the private care providers they contract to do the work, has the staff.

At every step of the way the daughter has had to advocate for her mother. Phone calls, emails and letters to the HSE, over and over. It’s not only a huge responsibility, but a burden on this, and every family in this situation.
Not that they would ever describe what they do as a burden.

“Five hours during the week and two hours at the weekend gives me a normal life. I’m not looking to be let out on a weekend night for drinks,” the daughter said.

The daughter describes how home support is essential for them, as she has a full time job in Kilkenny City and, naturally, worries about her mother being able to cope when she’s alone during the day, or even if she’ll remember to eat lunch.

She can’t give up work, she has to “put food on the table and pay the mortgage” and wouldn’t get a Carer’s Allowance.

The mother and daughter are the only members of the family. The daughter is an only child, as is her mother, and her father passed away some years ago. Friends, neighbours and extended family are good, the daughter says, but they can’t be there all the time.

Kilkenny families are desperate, especially those in rural areas where care staff opt not to travel to, when given the option. The ‘simple’ fix is to employ more home support carers, in the HSE and in the private homecare providers. But with a hiring moratorium in the HSE this doesn’t seem to be on the cards in the short term.

“The answer to everything, by both the HSE and private providers, is ‘family needs to step in’ or ‘she needs to be put into residential care,’” the daughter said, “I’m told by the HSE she is my responsibility.

“Mammy wants to stay in her own home. She was born in Kilkenny, she grew up on this farm. She’s been living here since 1941 and this is where she wants to die.”
There is a general lack of dignity and respect for “the people who built our country,” the daughter said.

The daughter points the finger at the management of home support services for these issues, praising the carers themselves.
“We’ve been through a lot of carers, a lot of them are very good, they are good to Mam, treat her well. They become part of our family. The biggest problem is that employers don’t treat them right.
“There is something seriously wrong with how the system is run.”

The daughter is currently fighting for evening care for her mother. In January 2023, after her mother was hospitalised with pneumonia, the daughter was told in St Luke’s that they needed a night care call. The application was denied, as were two appeals.
“It’s the simple things we need. With an extra call at night I might be able to take the dog for a walk, put on a wash or have a shower.”

But advocating for her mother leaves the daughter with the fear that if she gives out too much the services will be withdrawn.
“We’re very lucky in many ways. Mam can stay at home at the moment but when it does get more difficult what’s going to happen? I can’t even get the calls I am approved for now. I can leave here at 8.30am (for work) and get a call at 9.30am to say there is no carer for the day, and it’s left to me.”
“I worry daily what happens to her if something happens to me. All this doesn’t help, the fighting and the pushing.
“I see the impact on Mam’s health, she worries about me. All this has other knock-on effects all the time.

“What happens if something happens to me? That’s why we need help, not because we’re too lazy to do, but because we’re trying to preserve our relationships and our own health.
“I would like to be her daughter some days, not her carer.”

The daughter is frustrated with the lack of services, with the lack of care staff and the moratorium on hiring in the HSE. “There is no sense of the person in the HSE, they don’t care. The answer to everything is ‘we don’t have it, paddle your own canoe,’” she expressed that frustration.
She feels that the country, and the HSE, have so much money but it’s just not being spent and not being managed the right way.
“The moratorium I can understand for admin staff, but they need carers. We don’t need ‘bells and whistles,’ we need someone coming through the door that can do the job.”

The lack of carers is especially hitting rural areas in Kilkenny, but, the daughter says, “we don’t live on the moon.” The home is just five miles from the city.
“We just try to get through the day but everything is made so difficult all the time, and it doesn’t seem to be getting any better. We had to fight for everything we got initially, now we are starting to lose it.”

Lifeline
A north Kilkenny councillor is calling for the HSE to allocate necessary funding for vital Home Care Services that are lifelines for families, enabling their loved ones to receive essential care while remaining in the comfort of their own homes.

Cllr Pat Fitzpatrick said health care assistants play a pivotal role in our society, offering invaluable support and compassion to those in need.

“However, the efficacy of these services is currently threatened by severe staff shortages. Families relying on these services are facing undue hardship and uncertainty, as the demand for care continues to outweigh the available resources

“The deterioration of Home Support Services not only jeopardizes the well-being of vulnerable individuals but also places immense strain on their families, who are struggling to cope with the overwhelming demands of caring. It is imperative that immediate action be taken to address this crisis and ensure that adequate staffing levels are maintained.”

By investing in these services, we demonstrate our commitment to supporting our community’s most vulnerable members of society and help to reduce the burden placed upon their families, the councillor said.