Tim and Margaret Bruton relate the blessings of a support group for carers
We had recently retired when we joined a new church some five years ago.
We soon started to get to know other Christians in the church who were about our age. In God’s timing we were among the first of an influx of this age group into the church. As we got to know our peers better, it became apparent that we had a lot of things in common, and not just grandchildren. We rapidly discovered that many of us had commitments to care for elderly relatives.
Similar challenges
In conversation it became apparent that many of us were facing similar challenges and it was helpful to share experiences. The more we talked, the more we realised what a widespread issue it was for so many in the church. After discussion with the elders, two of whom were also facing this issue, it was agreed we would start an informal group to meet for a meal, fellowship and prayer. We called the group COGS (Carers for the Older Generation).
We held our first meal about two years ago with 20 carers attending, although it could easily have been 40 and in fact we had to organise another meal soon afterwards for those who couldn’t make the first one.
Sharing caring experiences
We are part of a church of around 200 members, which highlights the extent of the challenge. We have a meal at which a lot of small group conversations take place, then we join together and go around the room to share concerns and experiences. Someone might make a brief report, while another has to unburden themselves with a long debrief. There were many common themes.
For example, one member of the group had become concerned about his 90-year-old father who was living on his own and was largely coping, but had given up showering. It took several months of badgering the local Social Services to do an assessment of need. A date was fixed and our member made the three-hour drive for a 10am appointment. A two-hour assessment followed with the conclusion that, yes, Social Services would provide a carer for assistance with personal washing. At which point the father said, ‘no thank you’ and the social worker said, ‘fine’ and was gone, leaving our member with the three-hour drive home. The same father, when left with a sandwich for his tea, would leave it untouched in the fridge until it was thrown away the following week. This prompted similar stories from the whole group.
New territory
The ability to meet together and talk has been extremely helpful. Each one of us is on a journey of exploration with no previous knowledge of the steps and actions that are needed as our parents age and their needs grow. Sharing experiences like the one aboves is one of the powerful things the group has been able to do, so that the shock of seeing one’s parents doing the unexpected is mitigated by the realisation that this is just the ageing process.
Practical advice
Sometimes there is very practical advice to be given. For example, we thought we were well enough prepared with an Enduring Power of Attorney for an elderly relative, until one lawyer in the group pointed out that we also needed to register it in the Court of Protection, of which we had previously never heard. Straightforward to do and it saved us a lot of problems when it came to selling the family home.
Early on we found it very helpful to take note of the various issues faced and to compile a prayer list which we then circulated to everyone in the group. Obviously some of the more sensitive concerns weren’t recorded. The prayer ministry has proved itself and between meetings we can follow up with one another on how particular situations are developing.
Comforting
As our group has developed we have also expanded. Although initially we were largely newly retired, we were joined by younger church members who are beginning to have concerns for older relatives who are losing their independence. Caring needs are not exclusive to the over 80s and serious care issues can arise at a much earlier age. It is helpful to be part of a group who realise the uncertainties of caring for the elderly. Emergencies can and do occur at any time, so it is comforting to know there are those who understand the need to drop everything and go and maybe cover for any missed responsibilities. It can be an emotional roller coaster!
It’s not unusual to be summoned urgently to a hospital, only to find the patient sitting up in bed and saying how nice to see you. Being able to share this experience eases the burden. Another aspect of this roller coaster is a limitation on the ability to make commitments. Typically, a crisis is brewing and church friends are informed that we can’t help with a meeting, then we actually do turn up because the crisis either failed to happen or was quickly resolved.
The big decision?
Meeting as a group has brought up a number of common issues. One of the major ones is the change in the relationship as parents move from competence into dependency. Often they think they are more independent than they are and resent interference, especially from their children. Ageing is often accompanied by personality changes and, alas, dementia. These can be difficult to deal with, but the realisation that these developments are not unique to one’s own parents is reassuring.
A big decision for many has been the point when care in the parent’s home is no longer sustainable, even with carers coming in on a regular basis. It is very supportive to have others around who have negotiated that transition and can actually give good advice on finding a suitable care home and also alleviate the deep feelings of guilt that arise in that situation.
Experiences in dealing with the NHS and Social Services have also proved very useful. Understanding and managing the interactions with other family members also has its place. At times some family members are trying to do too much, while others don’t seem to recognise their responsibilities at all.
In the nature of things, membership of the group is not permanent. Elderly relatives have entered eternity and the sharing time in the group has made each one of us much more aware of the struggles the carers have been through and can respond more effectively in this final phase. As the group has developed over time it now seems appropriate that some members will continue meeting with us after experiencing bereavement, as emotional support is still needed which the group can provide.
How will we cope?
We all ask ourselves how we will cope as we age. It is our experience that our parents didn’t really expect to live on into their 90s and had made no real provision for it. Our shared experience is preparing us for the future. Our wills are written, our children have power of attorney. We know we may need full-time care. We know our bodies will wear out, but not how and when. But we have a confidence in our God that while we make our provisions for our uncertain futures, we are in his care.
