Time to put dementia care at the top of the health agenda

“At first, the signs were subtle. Brian might wonder what he went upstairs for…then there were other little things. I might ask him to bring a cup and saucer out to the kitchen and he wouldn’t understand what I was saying” – Nora Owen

Nora Owen still speaks from the heart when it comes to mention of the ‘D’ word. Dementia has been part of her life now for over ten years since her late husband Brian was diagnosed with it in 2010 after the couple began to first notice the symptoms. The former Justice Minister lived out every moment of the illness with her husband day after day until he deteriorated and finally passed away on November 27th 2020.

It was a severely testing time for Owen and her loved one. Since that stage, Nora continues to work very hard in creating greater awareness of this condition, perhaps the one many of us fear most as we head into the later stages of our lives. On the phone chatting to her recently, she was still talking passionately about what the rest of us have to do to keep the ‘D’ word high on the agenda. Nora still talks with great empathy about people with dementia and their carers often still having to cope with feelings of loneliness and terrible isolation.

My late mother also suffered with dementia after suffering a stroke at the age of 75, so I can fully identify with the feelings Nora describes as we chat on the phone. The former Fine Gael politician celebrated 50 years of married life with Brian in May 2018 – even though at that point he was “in the heavy grip of dementia”. She still vows to continue advocating for those suffering from dementia and the people caring for them.

There’s a myth among many in this country that this debilitating disease is exclusively a problem of the elderly. In fact, one in 10 people diagnosed with dementia are under 65 years of age nowadays and over 180,000 people in Ireland are either currently, or have been, carers for a family member or partner with dementia. It’s hitting every corner of the country – and makes no exception for any ages.

The former Dáil politician brings a message of great hope and positivity when she is asked about the care available to both the people who suffer dementia or those who look after them. “They can get the respite grant, they can get a carer’s allowance” she says, “and there are support groups all over the country now doing great work”. Nora is herself deeply involved in running one such support group in her own native county but feels that the support structures are even better in rural areas. She was more than delighted to hear about our own ‘Dementia café’ here in Roscommon.

The café is the creation of the Roscommon Dementia Alliance group – made up of representatives of agencies and support groups from throughout the county. It meets once a month either online or in person to bring information to those affected, to maybe enjoy a cup of tea or coffee, some nice nostalgic musical memories or just a story or a yarn. It is facilitated on behalf of the Dementia Alliance group by Roscommon LEADER Partnership.

Spotting the first symptoms of dementia in a loved one can be the most painful experience for any of us. “At first, the signs were subtle” Nora said. “Brian might wonder what he went upstairs for…then there were other little things. I might ask him to bring a cup and saucer out to the kitchen and he wouldn’t understand what I was saying. He would look at me as if I had asked him to fly to the moon”.

She adds: “I let it go originally because Brian would often suffer some memory loss but seem fine again and then we would carry on. It was the fear of facing it. I was in denial. I felt terrible because I knew there was something happening”.

After a family get-together, her sister Joan gently took her to one side and told her the hard truth: “You know Nora, Brian’s memory is not simply normal forgetfulness. There is something happening”. The reality suddenly dawned.

Nora took Brian to the doctor the next morning and he was diagnosed with the same condition that affects 11 more people in Ireland every day. One in three people over 65 are diagnosed, and unfortunately the numbers are still growing.

Living in the same home as somebody with dementia or Alzheimer’s can also be a testing experience – and one that often leads to fear and trepidation for relatives and spouses. I remember meeting my own poor mother one morning at the kitchen sink with a teacup full of hot water but with no tea or teabag in it – and sitting her down for a moment to try and work out what had happened. During the illness the habits of a lifetime can change in some ways yet not in so many other ways – which is also strange.

Music and song was an important link with the past that my mother never forgot, despite the deterioration of her condition. In her youth she had learned to sing the Percy French song ‘Come back Paddy Reilly to Ballyjamesduff’ and no matter how bad her condition became, she could still remember the words and try to sing as we ALWAYS turned to the left at the bridge of Finea – without fail – on our nostalgic journey back into her memory. Brian Owen and many others also held onto memories from their past – even during their toughest time with the illness.

To make it worse for Nora Owen, her husband Brian died in the middle of the Covid-19 lockdown. She said it was difficult visiting him at a distance during the pandemic but was also very comforted by friends and neighbours standing loyally on the road to pay their respects as he made his final journey following his sad death. She still hopes that practice will continue after the pandemic. We all stood out at some stage at the side of the road during the last two years to say goodbye to a friend or a neighbour and to be frank, it was a brilliant way to honour somebody. Hopefully this will continue.

Now Nora says she will continue to “make people realise that people are out there suffering still”. They should not be forgotten, she says.

The good news for our Roscommon readers is that Nora Owen will be coming to the county early in 2022 to speak at the Annual General Meeting of the Roscommon Older Persons Network, which is due to take place in Strokestown.

“I love going around the country to meet people and speak about my own experience” she told me when we chatted. “I know people love to hear about the TV show and the choir and David Brophy and the fun we had. I have nothing but good memories of the ‘Forget me not’ choir and I love talking about it”.

 

An invitation

The Roscommon Older Persons network have issued a public invitation to active age groups and other committees and residents groups around the county to help put dementia care at the top of their own agenda in the coming year and also to come along to the event in 2022 and listen to Nora’s special message. If you would like to attend please contact 086 0836720 for details of time and venue.