'I saw the front door open and the gate open... we eventually found him on the road' - Widow on caring for her late husband
“I was at the end of the garden doing a bit of gardening and he was sitting in a chair. I turned around and saw him get up and I thought he was gone to the bathroom. When he didn’t come back I went in and I saw the front door open and the gate open.”
Ann Twomey nursed her late husband Noel, who had vascular dementia, for over five years and through frightening times when he would go wandering or go missing.
On this occasion, Noel left their home and walked down the road until he was found a few miles away by their next-door neighbour.
“My next-door neighbour got into her car and I got into mine, and she went in one direction and I went in the other. She found him but she had difficulty getting into the car because he didn’t recognise her. The only way she could get him into the car was when she said ‘Ann needs you to come home’. He recognised my name.”
Caring for Noel was both rewarding and exhausting. It was a solace to know that Noel was safe and comfortable in her care, but it was also demanding.
“It leaves you exhausted and that’s the main thing that causes stress especially for the spousal carers. You’re extremely exhausted.”
“He would get up and wander during the night.”
“When you’re caring for someone with dementia you sleep with one eye closed and one eye open. You’re not in a full restful sleep. This was when Noel was starting to walk around the house at night and he’d get very confused. Because he was doing that, I had to leave the lights on so I was sleeping with lights on all the time.”
“It was very, very stressful, but it’s also rewarding because you’re appreciating the fact that you can do it for your loved one.”
Ann now advocates for services for carers and is a member of The Alzheimer Society of Ireland’s Dementia Carers Campaign Network.
To protect her own health when she cared for Noel, Ann decided to employ respite carers to come to their home for 12 hours every week.
“It is so important for the carer to take care of their own health. I did, I decided it was the time to use the rainy day fund and I brought in respite carers. I had two sessions of four hours, and the carer might read the paper to him or they’d play scrabble with him. He used to like practising his putting for the golf.”
“Then I asked for a male carer and that was really important because he connected with him straight away. It’s also very important that it would be the same carer every day.”
“I was reconnecting with my friends, but then I got to the stage that I got exhausted arranging to meet people. So on the Thursday I went to bed for four hours. I’d catch up, because I wasn’t getting that restful sleep.”
Online family training carer courses are available through the Alzheimer’s Society, which can educate families how to care for their loved one.
Education and public awareness can also equip people to help a distressed person with dementia in public places, Ann says.
“I remember one time I decided I’d bring Noel to mass in the same church that he made his communion and confirmation because I thought it would trigger a memory for him. But he got a very bad mini stroke which manifested in the same way as if someone was having a seizure so I was very frightened. I was surrounded by people in the church, and not one person offered to help me.”
“It’s such a serious condition, both on the person and the carer, that the carer needs support on their journey.”
Ann concedes that it may seem ironic, but Noel received the best care in a psychiatric hospital in the last two years of his life.
“First he went to a nursing home and all the people who were there were in their 70s and 80s. He felt young, he was hale and hearty, so he said ‘why are you putting me in there? This is no place for me.’”
“He had to go to hospital to monitor his medication and the ward he was brought into was the psychiatric ward and it was the best care he got. He was surrounded by young people and he was the only one with dementia and he had the best care in there.”
“A young girl who had bipolar depression came up to me and said ‘are you Noel’s wife?’ ‘You know’, she said, ‘you’re very lucky with the husband you have. He’s very good to me, he’s like a father to me, and I can talk to him’. He had a role in there. Sometimes she’d get very, very stressed, and she’d have Noel to talk to.”
“He was a quiet man always; he wasn’t one bit aggressive, and the nursing homes wouldn’t take him because he wandered. They tended to take people who weren’t at the wandering stage of dementia because they had an open gate policy.”
“He was kept in the hospital, back into the psychiatric ward, and he was a happy camper in there because they were all younger. It’s important to highlight that people shouldn’t have the fear about a psychiatric hospital.”
The Alzheimer Society of Ireland National Helpline is open six days a week Monday to Friday 10am–5pm and Saturday 10am–4pm on 1800 341 341.
National Carers Week 2018 is taking place from June 11th-17th. For more information go to www.carersweek.ie