Caring for a loved one with dementia: Brian’s story

Local volunteers are necessary in raising vital funds for the estimated 20,0000 people living with dementia across Northern Ireland - a number that is set to rise.

Brian Tohill, from Magherafelt, is just one of the many volunteers passionately involved with the Alzheimer’s Society and was recently recognised for his efforts as a finalist at the charity’s People Awards held last month at St James’ Palace in London.

Brian, 80, a former shopkeeper, was a carer for his late wife Mary, who was diagnosed with dementia in 2010 and passed away on April 4, 2013.

He was shortlisted for an award after helping to raise thousands of pounds for the charity, setting up ‘memory tables’ in shopping centres and visiting schools and local businesses to explain the condition and the work of the Alzheimer’s Society.

He has been advocating for the charity for seven years and is an active member of the Mid Ulster Fundraising Volunteer Group.

Above all he feels that the charity can give carers the immense of comfort of knowing they have someone to talk to who understands what they are going through.

“I know from my own experiences of looking after my wife that having someone to talk to is just so important because it can be a solitary struggle that is beyond difficult.

“I decided to get involved with Alzheimer’s Society because I wanted those affected by dementia to know they are not alone.”

Brian’s wife Mary, whom he met aged 17 and married at 21, first began displaying symptoms of the disease during a trip to South Africa to mark the couple’s 50th wedding anniversary.

“Mary came into the room we were staying in just totally confused, asking where we were, how we got there and when we were leaving. She was very distressed and it was devastating to see this sudden confusion cloud her understanding. When I think back there were other signs. Mary began to sleep in late and she stopped driving because she no longer felt confident doing that.

“She had stopped being able to handle money and do the shopping.

“Friends had noticed that she was hesitant ordering her food in a restaurant and when they checked she had been holding the menu upside down which was obviously very unusual and alarming.

“I began to have to keep a tight eye on her. I went to our GP and within a short space of time she had an appointment to see a specialist. He asked her what day it was and what date it was and she hadn’t a clue.

“Up to that stage Alzheimer’s to me was only a word but now it was part of my reality. The worst thing was when the doctors confirmed that the dementia would only get worse.”

Mary, a mother of four, was put on medication to stave off the effects of the disease for a time but her condition continued to deteriorate.

“I couldn’t leave the house in case she injured herself when left alone.

“There were a couple of occasions where I left Mary in the conservatory and then when I came back I couldn’t find her anywhere.

“I found her once sitting on a chair in the garage in the dark. Another night I washed the dishes and fell asleep in front of the TV and I got up and found her half way down the garden path with the dishes left sitting on the garden doorstep.

“In the end I had to do everything for Mary. I even had to get into the shower with her. It was heartbreaking. The body is there but the mind is not there. The person you love is like somebody you used to know.”

Because of his own health problems Brian reached a point where he had to give his consent for Mary to go into a nursing home where she could receive round-the-clock care.

“I was there nearly all day every day. When Mary was dying I took her in my arms and said, ‘Mary, don’t fight this anymore. I’m OK, we’re all OK.’ I told her our four children were OK. Within 10 minutes she was dead. Mary passed away on April 4, 2013.

“I wanted to be able to help other carers and to fundraise for the work the Alzheimer’s Society does. One of the main things I do is set up memory tables in different places like in shopping centres to help educate the public about the disease and the help that is available for those affected by the condition and their families. I can then tell them about my story.

“I also went into schools as part of a fundraising project for the charity and then they told me they were putting my name forward for an award. I was asked to go to the final in St James’ Palace and it was amazing. I was given a plaque with my name on it and I was chuffed.

“I try to do as much as I can to create a better world for people affected by dementia, from leaflet drops, to popping in for a chat with a local business, to educating school children.”

If you have been moved by Brian’s story and think you could offer your time, the Alzheimer’s Society is currently looking for volunteers who are passionate about raising vital funds to improve the lives of people living with dementia.

Alzheimer’s Society volunteer groups actively raise funds through various activities including craft stalls, cake sales and the society’s annual flagship fundraising event - the Memory Walk.

- If you would like to volunteer or find out more about the work of your local fundraising group, please get in touch with Linzi Stewart by emailing [email protected] for more information.