Alzheimer’s in itself is surely the winter season of a person’s life. It can be a long winter, with a painful start for all involved most notably for the person affected. For in the early winter of Alzheimer’s knowing what is happening is a big part of the suffering. For loved ones it is also a season of winter, sometimes a very long winter. That’s how it was for a friend from some years back and for her family and we shared a very special time recently saying farewell to her, speaking the pain and taking a step in letting it go and letting her go.
The winter of Alzheimer’s has seasons of its own, that is, the stages that a person goes through. Looking at it from the side of those who travel the journey with a loved one with Alzheimer’s, these stages, or seasons, are experienced as stages of grief.
The first grief comes with diagnosis and the loss of all assurance that life would continue as before. There is no way back.
The next grief comes as behaviour and interaction changes to the extent that what is distinctive about the person starts to fade. For example, a person who was known for the gift of listening and understanding and was always there for people: now no longer engages in the same way.
Then comes the grief at the loss of identity. Who is this person who looks like the person I have known so well, but feels like a stranger?
Each stage is hard but the season of disconnection is surely at the top end of hard. The grief we feel at the loss of response, when this person seems to look through me rather than at me, is deep. Where has our relationship gone?
When death comes, the loss of physical presence brings its own grief, compounded by all that has gone before, with the fear that we’re only going to remember these years of winter. What about the life we had before – the spring of childhood, the summer of the adult years of making the best life we can with people we love, the autumn of easing back on hard work and enjoying our favourite things and special people.
Stories bring back that life. They trigger our memories, as do photographs. For 15 minutes we just sat and let the photos and music wash over us. And our dear friend was restored to us.
I was aware too that letting go had happened at different points for different people. For some the loss of identity made it too hard to continue close contact, for some the letting go happened again and again at each stage. Whatever and however, it was surely right for each person and their relationship with their loved one. It’s the relationship, their unique relationship, that’s there to hold onto. For young ones who only knew her with the illness, the relationship is rich with what they did for her, visiting, taking turns to feed, spending time with her. This will always be part of them and helped make them the caring young people that they are. For those who knew well the person before illness, the task is to keep that person front and centre, along with all the loving that have continued to give her whether close at hand or at a distance.
They kept holding her in their hearts and that will not cease.