“We Might Have to Bring Him Home”

Tuesday’s Irish Times Life & Style section featured an insightful and compelling article by Professor Desmond O’Neill, a specialist in geriatric and stroke medicine, which highlighted the failure of our current government to address the important issues pertaining to our healthcare system – particularly for the elderly, highlighting the current status of the Home Care Package with echoes of the Fair Deal disaster.

 

home care package scheme booklet

The Home Care Package Scheme Booklet – click to read in full

 

The Home Care Package which is an administrative scheme is described in a HSE booklet as: “a set of services provided by the HSE to help an older person to be cared for in their own home. The services, for example [include] additional home help hours, nursing services, therapy services, might be needed due to illness, disability or after a stay in hospital or following rehabilitation in a nursing home.”

This set of services was halted in March but has been restarted and rejigged with new and different requirements for qualification that are still not fully clear. I have tried without success to contact local HSE offices to ask them about the changes.

Professor O’Neill wisely warns the public not to be duped as we were with the Fair Deal. I was never duped by the Fair Deal but I joked without humour that it was the greatest dupe of all time. I may not have actually used the word “dupe”; it’s quite possible the phrase: “crock of s**t” was likely used instead.
In 2010, five years after my father had been diagnosed with Early Onset Alzheimer’s at the age of 58, we realised he was no longer comfortable in the family home and that my mother who was his primary carer and others including myself who were involved in his care in various manners couldn’t provide the sufficient care he needed. Dad no longer felt he was in his home even when he was which agitated him frequently. He would spend hours pacing, wandering into rooms and had to be watched constantly. He could no longer wash himself. He could no longer feed himself. He was incontinent. He was 62.

Dad spent time in nursing homes for respite and before he went into a nursing home permanently they became more frequent. The weeks between respite felt like Purgatory. The weeks he was in respite rarely allowed us any. We wanted him home. We still worried about him. We were usually too exhausted to utilise the break and recharge our batteries, especially Mum. But when he was home we just couldn’t cope.

When Dad entered a private nursing home facility in February 2010 where he had previously attended for respite, we felt a weight off our shoulders. My mother might have a chance at living an actual life! I could come home and revert to my default setting of being totally selfish, throwing myself down on the couch and watching TV for the night. Not to leave out my brother who was just as much a part of this, having been by both his parents side the day his father was admitted into a nursing home – he could now focus more on his own family and the businesses he ran as he should. We all loved Dad but we had a right to lives and peace of mind.

Holding Dad's Hand in the nursing home

Holding Dad’s Hand in the nursing home

Of course, private facilities are not cheap. Dad’s pension would go towards payment each month. I recall sardonically thinking booking a room in the Georges V with a private nurse would be cheaper. Plus, Paris.

I recall my uncle telling us about the Fair Deal before Dad entered full-time care. Reading through the requirements, I had a feeling of growing dread. The onus of payment for the facility was not on me, I wasn’t earning much but it was on my parents. One who couldn’t even feed himself. The financial requirements section warranted a stiff drink just upon perusal.

The Fair Deal for the great unwashed was established in 2009. Those who qualified paid a mere 80% of their income towards the cost of care of a patient and 7.5% of assets annually. Since my parent’s assets included property i.e. the family home it had to be valued by a realtor and we were given the option that contribution of property assets that this contribution can be deferred until death if it is a nursing home loan.

We applied.

I felt the scheme’s focus was largely on the elderly which was of course incredibly important, but in our narrative my father was just 62 – not even old enough to be seen by a doctor who handled those with dementia in our catchment area, although the same man would go on to see Dad later and devoted hours of his time to me for my book on Dad’s illness, pouring over two years worth of files until Dad’s final day on December 11th 2012. Before that, you had to ‘go private.’

There were problems with the scheme from the outset. First, anyone with half a brain knew a hell of a lot of people would apply and so they did. Second, there was a budget that was capped annually. The summation of these two problems was waiting for a place in a nursing home. That, however, was not our problem. The money was.

Dad was admitted in February 2010 to a private nursing facility. If I recall correctly, Dad was under review for the scheme, he was still on a waiting list for approval. This meant paying the full fees until then. I believed at that time if Dad was approved for the scheme it would be backdated.

The fees were enormous and the place was not right for him. The strain of this on our family was a bigger burden than having him home. I do not wish to speak on behalf of my family but I’m certain they shared the worries of the financial burden this placed on my parents – particularly my mother. As I write this I realise that Professor O’Neill was right – we, including myself, were duped. My mother was handed an invoice every month and expected to pay it in full. We should have called BS. But dementia weakens you. You have only so much fight and energy to survive and support. At least now we can call it out for what it really was.

Cost of dementia in Ireland courtesy of The Alzheimer's Society of Ireland

Cost of care for dementia patients in Ireland & the UK courtesy of The Alzheimer’s Society of Ireland

 

There are moments through my father’s illness that will stay with me though I’d give anything to forget them. One day while at work my mother rang me. It was in the midst of the Fair Deal application and the budget was tight – and typical of my mother, she wouldn’t take an extra cent off me (one of my biggest regrets is that I couldn’t help her more financially). Just like that phone call one night in April 2005 when she told me: “He has what you thought he had” I remember little else except her saying: “We might have to bring him home.”

I could not have continued to work. My mother would not have been able to take care of him herself. Dad was getting worse, he needed 24-hour medical support we could not provide. The public nurse who only came to visit once when he was first diagnosed admitted she didn’t know much about Alzheimer’s. The horrible realization dawned on me that no one was going to help us.
In a blind rage of tears, I Googled for a HSE/Fair Deal contact number. I barely remember that conversation too: except repeating over and over again “Don’t you understand? Don’t you understand? My mother rang me crying. We’re in limbo here. I don’t know what it’ll do to all of us if we have to remove him but we can’t handle him. Don’t you understand?”
What could the person at the end of the line do except reiterate the status of the application and promise to have someone call my mother? I went home that night, defeated.

To cut a long story short, we never got it. My mother talks little about the events of my father’s final years so I can only pull from memory and it’s crammed full of events, vignettes, sorrows, and goodbyes. He ended up in better place – St. Camillus Hospital by the grace of a series of incidences that overshadowed the Fair Deal – but you’ll have to wait for the book to hear about that.

Outside our little story, the waiting lines continued to grow and the government was forced to pump more money into the scheme, which was basically the HSE’s version of the Titanic. They might as well have taken their money to Monte Carlo, found the nearest roulette table and put it all on 19 red.

Eventually, Minister Kathleen Lynch removed the budget cap and then the Fair Deal came under review in 2012. By then, we didn’t need it as it turned out to be the last year of Dad’s life. If our government attempted anything like it again would be one of the many final nails in Ireland’s coffin.

The comparisons drawn between the Fair Deal and the Home Package Scheme are apt. In both cases, the schemes were faced with an overwhelming number of older people ergo, no lesson learned from the Fair Deal. Waiting lists, therefore, are long. Initially, both schemes were sold to us as a lifeline, but are potentially a noose around one’s neck. Younger people who desperately need the services don’t seem to be considered important. They get one sentence in the entire booklet. Healthcare for the elderly will always be important but there has to be a voice for the younger people out there getting what is sadly still considered “old age” illnesses.

Home Care Package Qualification Requirements

The Home Care Package Qualification Requirements

Part of my campaign, Talk About Dementia tries to help those who are dealing directly with all forms of dementia and aims to guide people and provide helpful straight forward tips. One, for example, is to advise people to discuss with their doctors about when to put the dementia patient into a home, as I learned from my mother that when someone with dementia becomes incontinent, they are often placed in a home because people feel they cannot help them any further at that point. This is a difficult but manageable issue but dialogue with the right people is key. This is what my mother did – she rolled up her sleeves as she did at every juncture, got cleaning materials and continence pants, and Dad stayed home for over a year and a half. If she was paying full price for a nursing home, that saved her just under €100,000. Let that amount sit with you for a minute.

I also advise people to get in touch with The Alzheimer’s Society of Ireland and find out what they are entitled to in terms of care and support.
Another part of the current guidelines for The Home Care Package troubles me. While it focuses it’s attention on the elderly as it should, young people who would require this service, people like my father are only briefly acknowledged and only one type of dementia is named. I plan to reach out to The Minister for Health Simon Harris for clarity. I’m not done with this by a long shot.

If the Fair Deal was the previous government’s Titanic, the newly revised Home Care package may be its Britannic. I’m just glad my father isn’t alive to need it.

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