By Dr Max Mackay-James
I rarely make really important decisions on my own and without talking with somebody. I also know from experience that if I don’t discuss an important decision with anybody, it can often end up being a bad one, and there will be unforeseen consequences on myself and other people which I never thought of at the time. Like most people I like to talk over an important decision with people I care about and trust. I value listening to other people’s opinions and advice, and sometimes I discuss the options in detail so I can see what they look like. I especially like giving myself time to consider before I decide: after all most important decisions take time to ripen before they are ready!
“It takes community…”.
I heard this phrase in a Diealog peer support group as I was in not so long ago. Diealog programmes are run by the charity* I look after which works to grow community-centred caring networks, and the peer support groups involve local people who meet regularly to talk about all aspects of ageing and dying, and to support each other. The local people in a Diealog group can include family, friends, neighbours, and sometimes people who share a ‘special interest’ – for instance, perhaps some people in a patient group. The groups will nearly always include at least one person with a serious illness. The talk is open and honest, and we give each other permission to raise any topic we want to within ground-rules of confidentiality which have been agreed in advance, and some other guidelines for reflective practice and co-facilitation.
We quite often talk about our fears of losing control and our independence as we age and decline, and during the process of dying with a terminal illness. This will nearly take us into our concerns about not being in control or being involved in decision-making about our care and the place we want to be in and everything else we think we will want at the end of our lives. We worry about the frailty of age which we know is commonplace as we grow older, and especially about dementia and other forms of cognitive impairment which may very well make us unable to make decisions or perhaps even talk to people about the things that matter to us.
“It takes community…”. The speaker was a younger member of our group. I have seen the age range reported in the literature for similar to Diealog peer support groups as being between 7 and 95: the speaker in our group was not as young as 7 but she was under 50! There was quite a long silence in the group after she spoke. We had been talking about decision-making again, and this time we had run out of steam talking about how we thought would practically keep control and maintain the independence we said we wanted for our end of life decisions and living. We didn’t know the answer. Then she spoke.
In the silence I remember beginning to sense the quality of sadness I was feeling about the future loss of my powers transforming into a feeling of joy. The joy was simply arising in the awareness that this younger person had heard me along with all the others in the group, and she might be there one day in the future as part of my community to tell those caring for me what she had heard in this conversation. This transformation did not replace my not knowing the answer to how to be in control of decision-making, but it brought back a flow to the turbulence and added the possibility of creative effectiveness.
Yes, I thought, it takes community… my ageing and my dying, and decision-making is not something separate from other people. It belongs here too.
*Conscious Ageing Trust (Reg’d charity 1120811)