People with dementia have the right to maintain their independence and the majority of people want to live at home, in a familiar environment and linked to their communities. To do this, people with dementia need access to flexible, innovative care that reflects the complex and changing needs of the condition. Here families share their stories and explain why home care is so important to them.

"They were adamant that they wanted to stay at home and adequate and appropriate home care has been not just important but imperative to their being able to do so" - Susan Hester

"Last year my father was very sick with pneumonia. Home care hours were increased. Then a couple of months ago we had the hours cut. It was a case of the HSE 'robbing Peter to pay Paul'. There are not enough hours to go round all those in need. My father's physical condition had improved so we had to lose help, even though the progression of Alzheimer's in both my parents continued.

The impact of cutting those hours has been felt most by me, their carer. A deep rooted fatigue that comes from living full time with Alzheimer's, has been made bearable by home carers. These often unsung heroes are the people who have been with us first thing each morning and last thing at night, when everyone else is heading off for the weekend, or enjoying seasonal holidays. The support they have given us physically and emotionally is immeasurable. They are part of the fabric of our daily life.

Today my parents live with my husband and I, in the house where my mother grew up. Alzheimer's has meant that they don't ponder on the past or worry about the future. They live in the moment and are happy. They were adamant that they wanted to stay at home and adequate and appropriate home care has been not just important but imperative to their being able to do so. Without it, quite simply, they would not be at home.”

Read Susan's full story here.

"I really hope my wish to keep her out of residential care will not be denied" - Joy Tutty

Pictured above: Nora and her daughter Joy

“My mum, Nora has a rapidly progressing form of Vascular Dementia, which she developed after suffering heart failure and Atrial Defibrillation two and a half year ago. She was 84-years-old in August.

After improving a lot during the summer of 2014 and even returning to driving, mum went downhill rapidly and now needs full-time care. She still goes to church, and she comes to the supermarket with me, but she is unable to carry out any tasks and is increasingly restless. She has tried to climb over the gate and out of windows so she needs constant monitoring and cannot ever be left alone.

After a recent appointment with her geriatrician in Wexford, we were told Mum would only be able to be looked after at home another six months, as she will become bed bound. However, as I am a nurse I would like to keep my mum at home and my wish and her wish is for her to stay in her own home for the remainder of her days.I really hope my wish to keep her out of residential care will not be denied."

Read Joy's full story here.

"Dementia and the need for home care is an issue that affects or will affect everyone. We need to ask ourselves, what kind of society do we want to live in?" - Helen Rochford-Brennan

Pictured above: Helen speaking at the launch of the 'Dementia Care Begins at Home' campaign

“In my mid-fifties I started to experience memory problems and finally I was diagnosed with Early Onset Alzheimer’s in 2012 at the age of 62 while I was busy working and planning my retirement. I enjoyed a professional background and was a passionate campaigner for human rights. This was my life before dementia crept in; before I found myself having to fight for my own rights.

It was like a slow realisation that a creeping fog had descended on your life and was there for good. My day-to-day tasks became worryingly challenging. First, it was forgetting words, stopping mid-sentence, wondering what I was about to say, searching, covering up, forgetting again. Simple tasks that I had been doing all my life became a chore, a worry. 

I found my slowed thinking difficult to deal with. It impacted on me in many ways: such as trying to remember something I had newly learned, seeing words but unable to reach them, forgetting events at a recent meeting. I can still see people’s faces and feel the burning silence when words would not come at a meeting. That's when I really began to get scared. Family life became more and more difficult. I would chat to my son on the phone and forget the plans we had just discussed as soon as I hung up, or forget something important my husband had told me."

Read Helen's full story here.

"Philip has always insisted, from the beginning, that he wanted to stay at home during his illness and I want him to stay at home" - Annie McGuinness

Pictured above: Annie with her husband Philip

"Philip is my husband of 29 years and father of our one adult son. In the past, Philip was a very active, outdoors person; a good football player, an organic gardener on a commercial scale, musician, storyteller and community activist. Philip was a deeply spiritual man and many more things. We live in an isolated area of North Leitrim.Five years ago Philip was diagnosed with a disorder called Complex Hereditary Spastic Paraplegia. (HSP). This is a rare, inherited neurological disorder.

Philip has always insisted, from the beginning, that he wanted to stay at home during his illness and I want him to stay at home and be adequately supported to allow this to happen. I don’t want Philip to go into long term care. He is at the stage in his dementia where environment is hugely important. His home environment is familiar and comforting to him and he feels safe here. When we go visiting friends, go shopping, or go out anywhere he is generally only happy to stay for about an hour and then he wants to go home. I know I am quite able to look after him with support from specialists but I need every bit of this care, if any of it were to go I don’t know how I would keep Philip at home."

Read Annie's full story here.

"I really think the Government needs to take notice of how much people are struggling to keep their loved ones with dementia happy and healthy and in their own homes; all we need is a bit of support" - Catherine Mooney

Pictured above: Catherine with her mother Kathleen

“My mother Kathleen’s symptoms of dementia first started to manifest in December 2014, she became forgetful, was agitated, messed up her appointments and was acting in ways that were completely out of character...Finally, I contacted The Alzheimer Society of Ireland; I had absolutely no idea of all the great work the charity does on behalf of carers and people with dementia....With the Dementia Adviser’s help I finally managed to get another hour of home care which has been a massive help and this week for the first time Mam managed to get to an Alzheimer Society of Ireland day care centre. She came back like a new woman, she was absolutely thrilled. I would never have known that these options were there for us, there is no signposting once you get a diagnosis, you are told nothing at all, and you are left alone to deal with this challenging condition.

My mother repeatedly asks me not to put her into a nursing home, it is her express wish not to and she is adamant about this. I don’t want to put Mam into a nursing home, but I am so worried about the future, my health isn’t great and with just two hours help a week I am worried if something happens to me what will happen to my mam?"

Read Catherine's full story here.

"Home now means a place of stress and anxiety because instead of support to help us to handle the situation with mum we are left floundering without resources or help..."

A supporter has kindly shared their story of caring for a loved one with dementia. Please read it here.

 

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