Category Archives: Community

Facing the future alone

By Liz Lloyd
University of Bristol

Simone de Beauvoir once said:

‘Nothing should be more expected than old age: nothing is more unforeseen’.

This encapsulates perfectly the unforeseen nature of ill health and decline prior to death, which for the vast majority of us occurs in old age. Researchers often find that older people are reluctant to engage with the topic of death or at least, it requires a particularly engaging researcher and carefully crafted research tools to generate in-depth responses.

Widowhood has usually been researched from the perspective of a bereaved person after a death has occurred. Examples include accounts of the time around the death, examinations of widows’ resilience and coping strategies as well as their level of satisfaction with the circumstances in which their partner died (see for example the work of Kate-Mary Bennett and Laura Soulsby at Liverpool University).  Recently I have been researching literature on the giving and receiving of care between older people and linking this to the question of impending widowhood (understood in its broadest sense as the loss of a partner or other person equally close). This has inevitably raised a question about anticipation of widowhood, either because the individual who is cared for is on a trajectory towards death or because the carer is anxious about who will provide care if they die first.

Examining how older people with health problems look to the future was one of the aims of a recent research project at the University of Bristol. The Maintaining Dignity in Later Life project was not particularly focused on couples, but as there were 18 married/cohabiting/civil-partnered participants out of a total group of 34 questions arose about the particular circumstances they experienced.

In one interview that I conducted with a couple in their eighties – we’ll call them George and Pat – the following exchange came up:

Liz: ‘So, looking to the future, have you thought about where you would go to get more help or support?’

George: ‘Well if something should happen to either of us, I suppose we should have to have a nurse or something’

Pat: ‘When the time comes, it’ll come and that’s all there is to it’

This wasn’t the first time that I have encountered the view that Pat expressed.  ‘Living day to day’ is a common response and it’s not really surprising.  Not spending your time thinking about the future can be a protection against the growing realisation of the shortness of time left. In this interview, the phrase that continued to circulate in my mind was George’s:  ‘If something should happen to either of us’: If not when.

Widowhood might be understood as one among the many fears about the future and about death. Facing the future alone after years of a relationship is be painful to contemplate. My parents used to have a play argument: ‘I’m going first;’  ‘No I’m going first’.  For them, the prospect of death was buffered by a strong belief in an eternity in heaven, yet neither wanted to face the prospect of widowhood in their remaining time on earth.

Caring responsibilities and the need for care can force an individual to think ahead and plan for the future. We know that long term illnesses, such as Alzheimer’s or Parkinson’s disease generate anticipatory grief and a diagnosis of incurable illness engenders a sense of urgency. In Bennett’s research, a participant, Mrs T, described such an event:

He knew and I knew and he was marvellous. He got everything done so that he kept saying, “I’ll leave you okay, we’ll have this done and that done”’.  

On the other hand, the more general complex long-term conditions that many older people experience do not encourage looking ahead, especially when punctuated by episodes of illness from which individuals recover.  This was evident in our study when Robert (aged 83) talked about their need to move to a care home together ‘soon’ so that his wife would be better able to adjust to change after he died. Sadly, they left it too late and he died in hospital within a year. Decisions such as Robert’s typically take a long time, sometimes generate tensions within couples and are even worse when the alternatives appear bleak.  Philip (aged 88) said,

If my wife falls by the wayside I will have to seriously think about getting myself into a care home’. Philip remained unsure about this because ‘when that door closes you don’t know what happens’.

Far from engendering a sense of security, as Philip found the care system actually compounds the fear of the future because of what might happen. It has become part of the great unforeseen that we face in old age, which is capable of change and which should change.

 

“It takes community…”

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)