Married to Alzheimer’s: ‘There is no escape from brutal reality of dementia’

My recent trip to Limerick to speak at the Irish Hospice Foundation conference was initially organised on the basis that Tony and I would be going together. Unfortunately, in the week before we were due to travel, it became clear Tony's health was not up to the journey. It was another grim milestone for us. Up to this point he has been physically robust even as he has become more needy and dependent in other ways. One of the effects of his dementia is an increasing inability to deal with crowds and noise. I realised guiding him on and off trains and around airports would be challenging as he struggled to cope with the organised chaos of these busy places.

I arrived late Monday afternoon into Dublin and drove down to Limerick. As the conference was on the Wednesday I had most of Tuesday to myself. The coast has always had a strong pull for me. It is a good place to discard the junk that builds up in my brain. I drove out to Loop Head Peninsula in west Clare. It is magnificent.

Something completely unexpected happened as I gazed at the ocean. One moment I was thrilled by the stupendous power of the Atlantic and the next I was really angry with Tony. Why was he not there with me? This was something we should have seen and been thrilled by, together. I could not hold his arm, or snuggle together against the wind. My chest felt like it would cave in from the loneliness and grief. I wanted to scream for the loss of him now and in the future. Despite wearing the most inappropriate kit – plimsolls, a wool coat and no hat or gloves – I set off walking along the boggy coastal path.

Coastal magic
I was drenched by the ocean spray. Crazy woman. As so often happens for me, the coast worked its magic and I calmed down. The emotional pain receded and the brain kicked back in. The bottom line is, there is no escape from the brutal reality of dementia. But, it was the first time I had really come face to face with the actuality it. I missed him.

While I was in Ireland I was surprised and touched by how many people wanted to talk to me about their own experiences. It seems everyone has stories about family members who have suffered, or are suffering from, dementia. The ingenuity employed to look after relatives in their own homes was incredible. In many cases rotas of family members were drawn up so the care load was shared. I was told some funny stories. One young man helping to look after his granny shared the same name as her brother. Granny did not like her brother, so when it was her grandson’s turn to spend time with her the family had to put up a notice explaining he was not her brother and she was not to lock him out. Even in the most straightforward of family arrangements complexity lurks around the corner!

Funeral service
Following the hospice foundation conference, I had to be in London for the funeral of Tony Benn. He and my Tony were good friends over many decades bound together by a shared sense of humour and an unending commitment to socialist politics. Cherie and I attended the funeral together representing our respective husbands. Mine too frail and hers in a distant land.

The funeral service and tributes were deeply moving. It certainly felt like the end of an era. Of course, Cherie and I sang the Red Flag lustily as the coffin left the church. I turned to see a Conservative MP behind me and was slightly bemused to realise not only was he singing the socialist anthem, but he knew all the words. One really cannot make assumptions.

Outside the church, as everyone milled around talking to friends, I was glad Tony and I had decided to be open about his illness. People were able to talk to me, asking about Tony without the shoe-shuffling embarrassment of wondering if that was acceptable and if they were even supposed to know he had dementia.

Chatting to the MP Dennis Skinner he told me he visits a singing group in his constituency that has been set up for dementia sufferers. I recently listened to a programme on BBC Radio 4 which said music is a skill and a pleasure we retain for a long time and is therefore particularly useful for people with dementia. Tony remembers and sings numbers from his childhood and early adulthood. His father, George, was an excellent pianist and music formed an integral part of Tony's growing up. The spontaneity of making music was one of the pleasures of living in Ireland and something we miss now.

It was great to be back, albeit too briefly. I met lovely people who I hope are now my friends. I really want to have the opportunity to bring Tony to meet them – as well as the old friends we missed out on this time.