Ingelise's Story

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'Ingelise's Story' image

Ingelise's story is one of a number of personal experiences which people have shared with us as part of the "We Need Our Heads Examined" campaign.

Download the campaign leaflet here


Our lives changed three and a half years ago, when my husband was diagnosed with (PSP) progressive supranuclear palsy aged fifty six. Many battles were fought but nothing could prepare us for the abrupt changes that happened last year. From one day to another, walking, standing, speaking and swallowing became hazardous. A threshold was crossed. There was no way back, nor a quick way home out of respite care either.

The home care package could not be provided due to cost, age, organisation, difficulty finding providers and care needed. Work, travel and homecoming were impossible. Everyone was frustrated, the nursing home, the HSE, the GP and most importantly my husband and I. Nobody could cater for the sudden changes and my husband suffered mentally and physically. It was not possible to get services like physiotherapy in this situation either.

Eventually complications arose with serious infections, leading to critical conditions and hospitalisation. After a long battle, loosing twenty per cent of his body weight, he was brough home with a catheter, a peg tube and a poor prognosis. Our disabled bathroom extension was still being built!

We were very happy at home, he improved and the home care package finally materialised but we had only a short time to avail of it before he passed away.

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