The carer’s rollercoaster

George Drummond talks about life as a carer, coping strategies and an innovative care solution.

There are around 670,000 carers of people with dementia in the UK, often close family members who desperately want to do more but often feel helpless as they watch their loved one experience a devastating loss of identity and eventually become hospitalised.

When my wife Elaine was diagnosed with Alzheimer’s in 2011 her symptoms were mild and could, for the most part, be ignored. At this stage, both Elaine and I talked about how we might expect the symptoms to develop; our emotions ranged from denial to anger and fear.

For the first three years after diagnosis we managed Elaine’s condition at home and she would not allow me to tell any of the family. By this stage, the roller coaster has gone through frustration, more anger, love, and pity, as you see the person you knew gradually receding from reality.

As the symptoms became more noticeable we developed coping strategies for different situations. When out and about, Elaine would visit a toilet and often leave her handbag behind, so I would suggest leaving it in the car. When she could no longer make sense of a restaurant menu, I would look at it and say “Oh look they have X on tonight, that’s one of your favourites.”

As the symptoms became yet more advanced, it became apparent that we were approaching the time for Elaine to be admitted to a medical facility. At that stage the roller coaster of emotions include failure, stress, and despair. Elaine was admitted to Llandough Hospital in November 2015. Sticking with the roller coaster analogy, at this point you (the carer) now face the big drop. You ask yourself if you could have done more or whether there is a way you could have kept your loved one at home for longer, even though you know that as the sole carer you are becoming physically and mentally exhausted.

By January of 2016 I had developed a great rapport with the staff on East 18 at the hospital, and they shared with me their aspiration to create a room which resembled a residential environment, rather than a hospital environment. I volunteered to help with the project, along with the carers/relatives of two other patients who were also on the ward. The ward did all of the fund raising, and work started in January. At this stage the carer is still on the roller coaster but for me there was also pleasure in being able to do something which helped so many people (not just the patients, but also their visitors, from whom we have had some great feedback).

The decoration and furnishing of the room was completed and the room was opened in April.  I was often able to take Elaine into the room, particularly if she was agitated. She could let me know what she wanted to listen to, and we’d play one of the records from the large collection of 33s which we had amassed. This always had a calming effect on her, and I have witnessed a similar effect with other patients.

As the success of the room was publicised around the hospital, other wards showed an interest in having a similar facility and I was more than happy to volunteer my services for wallpapering, painting, and building/tiling fireplaces. I’ve now transformed three more rooms on the dementia ward, along with other relatives, including a 1950s/60s style living room, a 1960s ‘quiet room’ and a 1960s style seaside café.

After five months in hospital, Elaine’s roller coaster ride came to an end in May 2016 when she lost her battle with Alzheimer’s. As for me, I am still on the roller coaster but now I also feel some gratitude, as I was given an opportunity to do something that helped Elaine and will continue to help other patients, carers and relatives who are affected by this cruel disease.