I MISS THE man I married 42 years ago. My husband was a loving, happy, caring and contented man whose smile would light up a room. He feared nothing and accepted every challenge that came his way. He worked hard, he led the healthiest of lifestyles, was a talented soccer and tennis player and, at 51, achieved his black belt in Tae Kwan Do.

Then, nine years ago, Alzheimer’s slowly crept into our life and nothing was ever the same again. Eric was 63 at the time. In hindsight, there were changes to his personality before this. So, I suppose you could say he had early onset Alzheimer’s. Eric is now in the late stage of the disease.

Some years back a healthcare professional said to me: “Remember, you are no longer a wife but a carer”. Those words hit home and caused me some distress but how true they are. From the time I get up in the morning until my head hits the pillow Eric is in my every waking thought. No two days are the same for me. It is an ever-changing scenario.

It is a lonely road we carers travel

As I am writing this I am at breaking point. There is so much anger swelling up in me that is directed at the disease, not Eric. I am heartbroken. To see your partner gradually diminish to the position of a young child is emotionally overwhelming. When we are at home I must be in his line of vision at all times. I am his only security. If I rise from a chair he rises also. At times I feel like I can’t breathe and that my personal space is being invaded.

Sometimes, I see fear in his eyes and that causes me great anxiety. I constantly reassure him but that reassurance only lasts for seconds. On the other hand Eric no longer puts his arms around me to offer me comfort or hope. He is no longer aware that at times I sob my heart out, but at least he is spared that sorrow. It is a lonely road we carers travel. On the positive side, life and light come into his eyes when he sees me and that makes me happy.

That smile means the world to me; it means Eric is still there

Our sons are just familiar faces to him now. One of my sons told me there were so many things that were in his heart that he wished he had told Eric. Recently, when they had a quiet time together he told him. Eric will not have understood what was said to him but he will have felt the love that was expressed for him. I ask him most nights as I settle him down to sleep if he is happy and if he loves me. I suppose I am still reassuring myself that the man I married is still there. I get one of his beautiful smiles and he will reply “love you”. That smile and those two words mean the world to me because Eric is still there.

Sometimes it hurts if we happen to be out shopping and Eric, being my shadow, no longer understands to move to allow someone pass by. Once or twice that someone has become impatient. I inform them that my husband has Alzheimer’s as I guide him towards me. Usually you will get a “that’s okay”, a smile or just a blank stare. The general public have no awareness of how a person with this disease behaves at times.

This month The Alzheimer Society of Ireland (ASI) is running an anti-stigma campaign called ‘Lets Forget the Stigma’. It asks people to take a simple, three step challenge to fight stigma, these are:

1. Learn the facts of dementia;

2. Listen and empathise;

3. Link in with people with the condition and their carers, don’t isolate them.

The campaign deserves support and you can find out more here.

Information on dementia is sadly lacking, maybe education should begin in school. I think we, the carers, can play an important role in raising this awareness. This is why I am a member of the ASI Dementia Carers Campaign Network who advocate on behalf of carers.

Caring for our loved ones to enable them to have a good quality of life for as long as is humanly possible comes at a very high cost – psychologically, emotionally and physically to the carer. So please do not forget the carers and their families. Our voices must be heard. We must not be left in the shadows. We are doing our caring out of love but we are just human and our feelings and needs must be met. As the disease progresses as carers we need emotional/psychological supports, specialised medical backup, specialised respite centres, more home care and community supports to enable us keep our loved ones at home.

We need some emergency respite to be in place for our loved ones in the event of something unforeseen happening to us. Depending on the stage in this disease that those we are caring for have reached, it is sometimes not possible for a family member just to step into our shoes. The private care option is not an alternative for most families.

Alzheimer’s disease must never, ever define him

There are many people in our communities who are living well with Alzheimer’s and doing an astonishing job in raising awareness. Like them, as carers we should not be afraid to talk about dementia. There are many who have no knowledge of the complexity and diversity of this disease, believing it to be just a gradual loss of short-term memory, for example maybe misplacing the keys or spectacles.

They believe as the disease progresses people fade into their own happy world and become totally oblivious of what is happening around and to them. Not always true.

Some believe this disease is part of the normal ageing process. It is not. It has no respect for age, gender, intellectual ability or social status. It is a terminal illness.

Others feel there is a stigma attached to the disease. This must change.

I remain eternally grateful to The Alzheimer Society of Ireland and the HSE community care team for their continued kindness and support to Eric and I on this rollercoaster and surreal journey. As a member of the ASI North Dublin branch we always need more volunteers to help us raise awareness and much needed funds. If you have a couple of hours once a month please link in with us.

We must remain positive and have hope that in the very near future there will be a cure for future generations. My wish for Eric is he is remembered as the cheerful, warm, empathetic and physically fit man that he was. Alzheimer’s disease must never, ever define him. His smile is who he is.

Dorothy Mooney is a member of the North Dublin Branch of The Alzheimer Society of Ireland and a member of the Dementia Carers Campaign Network. She says, “these groups afford me something positive to focus on. I have a platform to raise awareness of Alzheimer’s disease and hopefully in some small way to help other carers who are on a similar journey to mine.”

This week (8-14 June) is National Carers Week, with events happening all over the country to recognise the work of family carers. Check out the website (www.carersweek.ie) for details of events in your local area.