The complexities of death and grieving

April 19th 2014. It was three years ago today that Geoff slipped away, leaving behind a life that had stopped being the life he would have chosen years earlier.

I am so grateful that I was able to be there, holding his hand as his breathing slowed and eventually stopped. He was finally at rest, after eight years of struggling to survive with dementia. It was a battle he’d vowed to fight, but winning was never an option. A number of events had conspired to accelerate his decline, and at some level he took the decision to let go.

I expected to feel relief. Actually I felt despair. I noted in my diary that evening: “I cannot begin to describe how a large hole has opened up – surely it’s been there for years? It feels so new yet nothing tangible has changed.”

What I suppose I meant by nothing had changed was that I had already lost the man I married. We had been a true partnership, sharing and solving problems together, raising our children together, taking decisions about how and where to live our lives, together. So when Alzheimer’s started to change Geoff’s world into a confusing and unfamiliar place, not only could I not turn to him to discuss a problem, I had to make it look as if there were no problems. Everything was fine, nothing to worry about. Any hint of worry and he would magnify it ten-fold and become dreadfully anxious.

That was a lonely time, so I was quite taken aback at feeling an even more profound sense of loneliness when he had to move to a care home, unable to wash, dress or feed himself. He was still able to walk and he was prone to hallucinations and paranoia, so he became a danger to himself and to those of us around him.

I visited Geoff virtually every day for the thirteen months he lived there, and in the first few months I seemed to spend my time lurching between tears and a state of anger. I learned a lot about care during that period but I don’t want to dwell on that today. We did experience the occasional moment of happiness together. I walked in to his room one day to hear a familiar song on the radio. “What’s this song?” I asked him, smiling. ‘Lady in Red’ he replied without hesitation, smiling right back at me. We had fond memories attached to that song and it was a delight to see that he could still recall the title when he had virtually stopped talking, and that it could still trigger a pleasant moment for him, for us both.

Despite those rare and brief moments, I was essentially having to get on with life without him, so I was unprepared, again, for the huge and fresh sense of loss I felt when he died. Here I was, grieving for the third time as if his death had caught me by surprise.

Three years have passed, and it is getting easier to live with his absence. I have read that the second year can be worse than the first. That was the case for me. You expect the first year to be bad so you prop yourself up, live from day to day, take it as it comes. But as you move into the second year and there is no miraculous feeling of ‘recovery’ it can become overwhelmingly depressing. There’s no end of the year to look forward to, life just stretches out without any clue as to when the black clouds might lift a little. I am luckier than many in having to be there for my children, to be strong as they coped with their own grief alongside the challenges of teenagehood.

Time does eventually work its magic, I’m not seeing Geoff lookalikes in the street so often and whilst not a day goes past without me thinking of him, I am moving on, as he made me promise I would in a conversation we had long before either of us knew anything about dementia.

I know he’d be proud of our daughters with their music and sporting achievements and especially for their bright and enquiring minds, and for that matter of all his children and grandchildren, this year being one of weddings and life changing decisions throughout the family.

I think he would also be proud of my attempts to change things for the better. Having been able to learn from his experience of living with dementia, and convert that into something tangible to help others in a similar situation, allows me to feel that his suffering and untimely death were not entirely in vain.

Geoff and I would have been together for 20 years in the September of the year he died. Not long enough, but we had some good times and I am starting to feel grateful for the memories of those earlier years, and to allow the sadness and struggles of his later years to settle into the background. It just takes time.