Caring for the carers

Angela Geoghegan arrived at her daughter Carmel's house in Oughterard one winter's day carrying a little suitcase. The former confectioner was 84 years of age and suffering from vascular dementia. She never went home.

Three years later, a day after her 87th birthday on January 12, this quiet and dainty mother of four daughters, whom "no-one could say a bad word about ", passed away.

Carmel, a former guest house owner, describes the years she cared for her ailing mother, who in her earlier years had made wedding and christening cakes and ran the family trekking centre during the summer months, as "wonderful" and the "most rewarding of her life".

Angela was in her late 70s when she first began exhibiting signs of dementia, according to her daughter. "Looking back now, I did see changes in mom, she was getting more subdued," says Carmel. "She used to sit staring. At that stage she lived at home with my dad and my younger sister. We were a very strong family, dad was a character and she usually tended to be in the background. She had always been a quiet woman who had kept to herself. So, we didn't pick up on the changes straight away."

She suffered from osteoporosis and had several falls, one of which resulted in her being hospitalised for a shattered vertebrae in Merlin Park Hospital. Her mobility was affected and she came to stay with her daughter for a short period. Not long after returning home, there was more trauma in store for her - her husband was diagnosed with colon cancer and died within three months on December 21 2010.

Slowly, Angela's health began to deteriorate further. She appeared withdrawn and started to lose interest in things. She was prescribed antidepressants but there was no major improvement in her condition.

In January 2011 when she was 82 years old she attended a geriatrician who recommended that she should have an MRI scan. Much to the shock of her family, she was diagnosed with vascular dementia, the second most common type of dementia. It can cause difficulties with planning and reasoning, depression, balance issues, incontinence and in her case, she lost the ability to speak in her final year, according to her daughter.

Outgoing person

"I didn't know anybody who had dementia, it was a complete shock," says Carmel who became her primary carer. "I did not have a clue about it, I went through the first two years in a daze. I didn't have children but in a way, caring for her must be like caring for a baby."

Becoming a fulltime carer presented Carmel with many challenges and rewards. Being confined to the house frequently meant she missed out on social interaction, people stopped calling too, and the loneliness and sense of isolation could be keenly felt at times.

Carmel, a naturally outgoing person, says carers' self esteem can dip also as they lose touch with friends due to the demands of their role.

"Your confidence goes as you are not out and about. There is a level of isolation also - you don't have to be in a rural setting to feel isolated. It happens when you lose the ability to go out and connect. You start to doubt yourself too and you stop laughing. I only heard myself laugh recently like I used to laugh. Your energy levels can be low as well. I would be a comfort eater and it is a vicious circle. People are telling you you look awful [because you are exhausted] and that you would need to mind yourself but there is very little help forthcoming. The Alzheimer Society of Ireland and Western Alzheimer's were great but there is only so much help they can give. What saved me was getting away occasionally to rest and study. I attended a counsellor as well. My friends kept me sane as I could vent to them. And there was also my dog."

The fact the people are uncomfortable around the condition and avoid talking about it can be difficult as well. "Sometimes you would feel that nobody wants to know you. A lot of family members and neighbours can't deal with it, they are in total denial so they don't talk about these things. Many of mom's friends would not visit, maybe they didn't want to see her like that or did not know what to say. I suppose they felt they might be bothering us too. But we were glad of the company. People do not realise you can sit with someone and say nothing.

"Mom loved getting out for tea and cake. A lot of places don't cater for those with disabilities. Enjoy Cafe in Moycullen, was great. The girls there were so good to her."

Gentle soul

Her mother had always been a gentle soul who was well liked by everyone. However, as the dementia started to take its toll her personality began to change.

"She went through a very aggressive stage, kicking and pinching and using bad language. I knew that wasn't her character. Mom was the most gentle person, she was so quiet - she was an angel, no-one said a bad word about her."

Carmel noticed the effects of little things, such as when her mother ate well her brain function would improve and she would become more alert. Equally, as she was a very private person she found it difficult when independent carers would come into the house to look after her. There were funny moments too like when her daughter took her to St Francis Day Care Centre in Newcastle. "She hated it because she said it was full of old people!"

A "wonderful" public health nurse called Fionnuala McDonagh and a part-time NUI Galway diploma course in social gerontology became two of Carmel's "lifelines".

"Fionnuala was just amazing, she helped me when no-one would. She would give me reassurance and say I was doing a wonderful job. The course was an absolute lifeline for me. It covered areas such as ageing, dementia, and end-of-life care. One day a nurse called Una Molloy from the hospice in Raheny gave a talk on palliative care. It was a watershed moment. I realised that was what I was doing for mom. I was in tears. It was the first time I realised that mom was dying. Sometimes when you are a carer you cannot cry, you have to be strong to protect your loved ones and bottle it up."

Angela Geoghegan passed away on Sunday January 11 2013 at 8pm. She was 87 years old. Carmel says she had a "beautiful" death and that caring for her was the most rewarding thing she has ever done. It changed her life completely.

"Life is a very fragile thing, you never know what the next hour can bring, life changes in the blink of an eye and none of us knew or comprehended the enormity of the domino effect of change that would transpire after Dad was rushed to hospital. One chink in the chain severed and life changes forever.

"Personally it was the worst and yet the best thing that has happened in my life, my outlook, my personality, my mindset, my whole ethos of life has changed. I learned to live for today and now I have a very rich quality of life where friends and extended family are the most important thing. I have learned that material processions cannot bring you happiness. If you are lucky enough to be in the company of those you love and respect you need very little else. You have to learn to let go of the negative people around you and remember to treat others like you would wish to be treated. You only get one shot at life - make it a bull's eye!"

Heighten awareness

Carmel's focus has changed completely in the three years since her beloved mother passed away. Her experience of caring for a loved one with dementia has given her a good insight into the challenges family carers face and the need for support services. Having trained as a dementia champion with Dublin City University, she is keen to heighten awareness about the condition. She presented workshops on it in Oughterard and Moycullen last year and is spearheading an initiative, entitled Make Connemara a Dementia Friendly Community, which aims to empower communities to help sufferers improve their quality of life. Carmel is also studying for a BA degree.

"I want to advocate for people with dementia, I want them to be treated with respect," she says. "There is a commonly held false perception that when someone is diagnosed that they don't know what they are talking about. But that is pure ignorance.

"What is needed is more day support services. There is no support [for the area] between St Francis Home and Clifden. I want to set up a day centre in Oughterard, which could even be open one day a week which would have a small community respite area with maybe one to three beds. This would be where people could watch an old movie or listen to a talk, where you could drop someone off and there would be interaction with young people or people would be allowed bring their pets with them. I would also like to see community groups setting up homecare packages and rolling them out in their own areas. This would be a not-for-profit scheme and would take care back from private agencies.

• Carmel Geoghegan, who works in a voluntary capacity, is organising a conference entitled "Living well with dementia in rural Ireland" at Peacocke's Hotel, Maam Cross on Monday May 29. The event will focus particularly on carers and support services. She is also available to speak to organisations interested in finding out more about dementia and her experience of being a carer. She can be contacted at (086 ) 3612907.

• About 50,000 people have dementia in Ireland - some of those are as young as 30 years. A total of 5,000 live in the west in Galway, Mayo, and Roscommon. This figure is set to treble in the next 20 years. Dementia is the umbrella term used for a range of symptoms which manifest in a decline in intellectual functioning caused by degenerative disease of the brain. The most common form is Alzheimer's disease followed by vascular dementia.

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