Crisis in care: One family’s story of a desperate battle to get help for their ailing mother

The story concerns a 76-year-old widow who we will call Mary. Beginning in May, Mary experienced rapid cognitive and mental health decline.

The account that follows details her family's interactions with Irish health and social care services struggling to cope with an ageing population.

Mary was in good physical health at the beginning of this year, living an independent life in a large provincial town.

She has five grown-up children who are based in different parts of Ireland and, in most cases, they are living a considerable distance away from their mother.

Then, in late May, came the first signs of a deterioration in her mental health

On their regular visits home, the family witnessed their mother functioning well, attending family events and looking forward to the birth of another great-grandchild.

Then, in late May, came the first signs of a deterioration in her mental health.

Mary experienced confusion, insomnia and anxiety. A routine blood test showed low sodium levels, and she was admitted to the local general hospital for two nights for a sodium infusion.

After she was discharged, she felt psychologically unwell within days. The family decided to organise a rota to care for their mother. One of her children would stay with her in the family home or they would take her to where they now live.

The following four-and-a-half months unfolded like this:

June 1: Mary's high blood pressure prompted a call for an ambulance and she attended the emergency department of the local general hospital, accompanied by a family member. She was admitted for overnight observation and discharged the following day.

Mid-June: Mary began to tell family members that she could no longer care for herself, remember her medication or perform basic tasks like cooking. She attended her GP and was prescribed sleeping tablets.

The hospital planned to discharge Mary, despite the family's concerns about her psychiatric issues

On another visit to her GP, she was prescribed antidepressants. Both treatments proved to be ineffective, and the family grew increasingly concerned about their mother's cognitive and emotional state.

July 6-8: Following further mental health deterioration, the family took Mary to the local general hospital where she was admitted, but she was discharged two days later due to the "absence of medical issues".

July 11: After no improvement and witnessing further deterioration in their mother's mental health, two of her children brought Mary to the regional psychiatric unit without a GP referral, seeking urgent psychiatric care.

Despite her non-communicative and psychotic behaviour, the unit declined to admit her, diagnosing severe depression.

This refusal left the family distressed and they returned home with their mother, uncertain of where to seek further help.

July 15: Mary received a visit from a clinical nurse specialist, a member of the psychiatry of later life team attached to the psychiatric unit. The nurse found her in good spirits.

July 18-19: Within days of the visit of the nurse, Mary's mental health declined further. Due to her escalating hallucinations and delusions, she was taken again to the local general hospital and subsequently discharged to a local nursing home for respite care. Her mental health continued to deteriorate with further extreme hallucinations and she refused to eat or drink.

July 22: Mary was transferred back to the general hospital from the nursing home after developing a blood clot and a urinary tract infection. Hallucinations and confusion persisted during her hospital stay, which lasted five weeks.

August 1: The family met the healthcare team at the general hospital and were informed there would not be a formal diagnosis of Mary's condition for six months. However, the medical team informed the family that they believed she had dementia.

​The hospital planned to discharge Mary, despite the family's concerns about her psychiatric issues. After intense discussions, the team agreed to discharge her to a nursing home for six weeks of respite care.

However, no nursing home placement was secured as two facilities refused to admit her, citing an inability to meet her needs despite claims of dementia-friendly services.

Family members asked hospital staff to transfer their mother to a psychiatric unit but were repeatedly informed that this was not possible.

She remained in hospital, where she continued to be prescribed antipsychotic medication.

Mid-August: Despite ongoing confusion and mental decline, Mary was discharged home without any public health services or community supports in place. The family queried whether the HSE's integrated care programme for older persons was functioning in their mother's health region but were informed that it "isn't fully operational".

During her stay in hospital, nursing staff applied for post-discharge home supports under two separate HSE funding mechanisms, the Community Rehabilitation Service (CRS) and Community Intervention Team (CIT) support.

Both applications were refused without explanation, though an offer was made to provide two "comfort keeper" visits per week. To date, these supports have not materialised.

August 23: Mary was discharged from hospital.

End of August: Having cared for their mother within the family home, and in their own homes since late May, the family arranged informal private companionship for weekdays by employing a young woman to stay with Mary.

​As she was adamant that she wished to stay in her own home, the family continue to care for her at weekends. While at home, Mary continued to experience severe psychiatric symptoms, including hallucinations, and her physical condition worsened.

The psychiatry of later life nurse returned and was shocked at Mary's continuing mental health deterioration. He advised the family that her medication was not working and that she should be admitted to psychiatric care.

Early September: The family engaged with the GP, seeking guidance on Mary's continuing decline and to get a referral letter for psychiatric help.

Despite her being at home for two weeks, no public health nurse visited as no communication had been received from the hospital regarding the August 23 discharge.

There was no engagement from community care services other than the two visits from the clinical nurse specialist with psychiatry of later life.

​A public health nurse, because of a personal connection to the family, visited Mary and submitted a new application for CRS and CIT support.

September 14: After a further decline in her condition, the family took Mary to the regional psychiatric unit where they were advised to return during weekday hours. At the family's insistence and after exhausting advocacy, Mary was admitted to a psychiatric unit, where she remains.

The experience of this family is not unique. Despite the HSE's Enhanced Community Care (ECC) programme's €240m investment in community health services, nearly 6,000 older people continue to wait for homecare hours.

While health and social care professionals continue to provide high quality care to older persons, they openly admit that provision of services is disjointed with a "postcode lottery" operating that is wholly dependent on where a service user resides.

Like any lottery, there are winners and losers. And that begs the question about whether you, or a loved one, will be a winner or loser if and when the time comes.

​Dr Patrick McGarty is a senior lecturer in Public Policy at Munster Technological University