Mary and Roger have an incredibly close relationship having been married for over 40 years. Recounting the days when he first met Mary, Roger said: “We met for the first time in a lecture theatre at the teacher training college we both went to. We would regularly meet up with our peer group for a drink at lunchtime. People in the group would often ask me, ‘where is your wife today?’ And I said, ‘Well, we’re not married!”
Things started to unravel in 2010 as Mary had a spate of horrendous nosebleeds and they simply couldn’t work out what the underlying cause was. After two years and after seeing all the doctors in the practices, Mary went in for a brain scan and was told that she had early stage Alzheimer’s.
However healthcare professionals told them both at the time that they wouldn’t know for definite until Mary had died. “There was nothing to cushion that blow and Mary started to cry,” Roger says.
In order to help them navigate through their new world post diagnosis, they came up with their own ways to manage the condition. The key thing for them both was to get out into the local community and raise awareness of the condition as best as they could.
Singing for the Brain
Roger says that Mary has talked at singing sessions run for people with dementia and their families about the challenges which she faces. He continues: “Music has always been a passion for Mary and, despite not being able to read now, she remembers all the songs she used to sing.” Music therapy after all has been proved to access parts of the brain which remain unaffected by dementia. For Roger, it “takes Mary back to a time before she was diagnosed.” It’s clear that Roger knows that Mary is still there and it is again testament to the strength of their relationship.
Since the diagnosis, they understand that Alzheimer’s is a hidden condition which is so dependent on people respecting and understanding them. In light of this, they needed someone who could understand what Mary was going through, to know that every time Mary would see a dark patch on the floor she would see a gaping hole, to know that things that used to be second nature to her were becoming increasingly difficult – like reading.
Admiral Nurse help
This someone would be their Admiral Nurse, Mekala. However, it took two years after the diagnosis until they had a phone call from the Council. It was this call which introduced Mary and him to Mekala. He remembers his first visit fondly. “We talked generally about Mary’s condition and how it might develop,” he says. Roger understands that there is no time limit on when something may happen during the course of Alzheimer’s but he needed someone who was approachable, understanding and very caring by his side – which Mekala undoubtedly has been for them both.
He continues: “She would come out to see us regularly and if I phoned her she’d always arrange to come round as soon as she could. She treated Mary with an immense amount of respect – it helped that they both share a love of scarves and regularly commented on each other’s choices.”
“When Mary was with Mekala, she was able to talk to someone who understands the whole situation.”
Mekala got to the heart of many of the complexities which Roger and Mary were facing. Getting an LPA (Lasting Power of Attorney) is important for families with dementia as it means a family member can make decisions around care or financial matters when a person loses capacity. Awareness around this is still limited and the applications can prove complex for families with dementia who are already going through so much.
Around this, Roger says, “Mekala helped me get to grips with LPA. Mary’s father sadly passed away and we needed to get his affairs in order but Mary needed help to do this. This would have gone completely over my head if Mekala hadn’t been there to support me. The way she changed our lives was just by being there for both of us.”
In sickness and health
Alzheimer’s is a degenerative condition and Roger understands that their relationship will never be the same again. “My relationship with Mary is totally different as I have to look after her all the time now,” he says. “There are instances when she starts speaking but then forgets what she wants to say and the sentence is never completed. There are also days when she doesn’t know who I am.” Roger however made a promise to Mary to be with her in sickness and health, and to ensure that he will always look after her in the comfort of their own home.
Alzheimer’s is challenging for any family to cope with. At Dementia UK, we are passionate about raising awareness of the thousands of families living with not only Alzheimer’s but other subtypes of dementia too, of which there are over 200. World Alzheimer’s Day is important for a number of reasons; to get families like Roger and Mary’s talking about it but also health and social care professionals, politicians as well as people who have not been diagnosed but are at risk. We want everyone to know that they don’t have to go through this by themselves.
As Roger says: “No one should have to face these challenges alone, which is why we need more Admiral Nurses to support families like mine.”