Robert Crowley lost his wife Julie to dementia last year. Read how his experience of caring for her has inspired him to create an album of spoken word and music, 'Care Comfort Compassion', that he hopes will help others in his position.
My life changed when I met Julie. She was always happy and smiling, but very sensitive. I often had black dog days and she taught me to live and love again.
When she became ill, looking after Julie was a privilege and was something I did to my absolute best ability.
Someone asked me recently if I’d had any experience of dementia before Julie was diagnosed, and I hadn’t really.
It was a learning process as her illness progressed – slowly at first, before it became unstoppable.
Spotting the signs of dementia
The first symptoms I noticed in Julie were repetition of questions or general observations. There were times when I would get frustrated with her, saying things like ‘Julie I’ve already told you that’.
I wasn’t aware of what was going on when these symptoms first appeared in 2009. I feel incredible guilt for how I dealt with this situation, even though I wasn’t to know what was going on.
That’s why I think it’s really important to get an early diagnosis, as it can put enormous strain on your relationship.
Julie’s life before I met her had been as a journalist. She liked a drink, which I think affected her in later life. At a point I approached Alzheimer’s Society about possible side effects or illness from that lifestyle. They noted that Korsakoffs Syndrome was a possibility.
Julie displayed some of the effects: confabulation, saying things that made no sense just to cover up time lapses, repetition, forgetfulness. Our GPs never helped in any way even though I had discussed this with them.
What I really would have appreciated was an early warning of what vascular dementia meant for both of us. When she was taken into care, it was really sad and hard. People who are carers need assistance, they really do.
Remembering Julie through music
I had joined a harmony group while Julie was in care, just to get myself out and about and begin socialising with people.
When Julie passed away, I thought about producing a CD in her memory and to raise money for Alzheimer’s Society. I put together a collection of music and spoken word and called it ‘Care Comfort Compassion’. In times of crisis, music can be incredibly healing and this album is exactly that.
There are songs of hope, songs of love, classical guitar, a song of parting, a Quaker reading and some church bells. It’s incredibly calming. The actual sequence is from finding love to her passing away.
This album is a love poem to Julie – not maudlin, but comforting.
As well as songs from the harmony group, there are readings and some of our favourite songs – including tracks by Peter Gabriel, Kate Bush and Annie Lennox.
There’s also a cover of The Wind Beneath my Wings from the film Beaches, because we enjoyed watching the film and both liked the song. This track inspires me to do the things that we wanted to do together.
All the music and poetry on Care Comfort Compassion has brought comfort to me, and I hope it will offer similar comfort to others.