What kind of person comes to mind when you think of a caregiver? Are they old or young? male or female? A March 2022 Children’s Society report noted that there are approximately 800,000 young caregivers in the United Kingdom (UK). Thirty-nine percent of those caregivers said that nobody in their school was aware of their responsibilities.1
In 2020 the UK government found that 17 percent of the general public, an estimated 9.1 million or one in every six adults, were providing unpaid care.2 Here are some of the statistics from the research:
Being conscious of caregivers’ needs is of growing importance because, as the above mentioned research points out, “carers can find themselves in poverty or financial hardship, struggling to make ends meet for themselves and the people they care for. Caring can also seriously affect health, well-being, and relationships.”
With such high statistics you would think that caregivers would be fairly prominent in the church, but unfortunately they are an easily neglected group. Adventist Possibility Ministries (APM) is determined to change this. One of the actions voted at the recent General Conference Session was for the inclusion of a new section in the Church Manual giving emphasis for APM at the local church. One of the seven people groups that APM focuses on is that of caregivers.
My experience as a caregiver started when my son was 4 years old. He was diagnosed with Morquio syndrome, a rare metabolic disease that won’t allow his body to process certain sugar molecules. As this condition progressed, he eventually became wheelchair-dependent. As you can imagine, this started our family on a long journey of discovery.
When we first received his diagnosis, I questioned my role in his disability. Was it my fault? Was I guilty in some way? Had I done something or neglected to do something that resulted in his condition? You may remember the story of the man who was born blind in John 9. The disciples’ question was “Rabbi, who sinned, this man or his parents, that he was born blind?” (verse 2).
Roy McCloughry is correct when he observes, “There is a fear in every human being that needs to be dealt with if it is not to become a burden to us. Buried deep within us is the idea that when we are going through difficult times we have in fact displeased God.”3 One of the first things parent carers have to deal with is their sense of guilt. The implication for our church is for us to be conscious of our theology. A wholesome and balanced theology of disability is very important for parent carers to hear from the pulpit.
Another thing we discovered as parent carers was that we became the experts in our son’s condition. Because Morquio syndrome is such a rare disorder, we were often asked by doctors, particularly general practitioners, about his symptoms. It was a relief when we finally found a doctor who was an expert in these kinds of conditions. It meant that we could relax and ask the questions for a change. This is something for us to remember as church members. Having to answer the same questions over and over can be quite tiring. Please remember to ask questions sparingly.
How were we welcomed in church? We were quite fortunate, because I am a pastor and we tend to receive extra care and attention whenever we visit other churches. I know other members who have stayed away from church because of lack of understanding and care. Particularly those with children who have learning difficulties connected with behavioral challenges. Being faced with irritated staring from members or even being asked to control the child’s behavior can be quite demoralizing and disheartening. In these instances, I think it’s good for us to remember the golden rule. If we were in their shoes, how would we like to be treated?
Respite was not something we ever felt the need for, because our son had a physical disability that we felt we could handle. As he grew up, he was very independent and determined to do as much as possible for himself. However, those carers who are looking after people with more complex needs may need to be gently encouraged and reassured that putting their charge into respite is not a sign of weakness or selfishness. Carers will need to be constantly reminded that if they are exhausted, they will not be able to help and care as they should. It’s vital to get away and replenish and recharge one’s batteries.
It’s important to consciously view carers as a valuable church resource. They, like all other members, have been given gifts by God and have something valuable to contribute. The one thing to remember is to be flexible. Long-term commitment can be quite difficult, especially when the timetable of a carer is often dictated by the variable health of the one they are caring for. Flexibility is a must.
Do you know someone who is a carer? Perhaps you can show care for this often-neglected group by finding out who they are and how they might need support. Interviewing a carer in front of the church is a great way of helping church members gain insight into their daily roles and responsibilities. There are also a number of very helpful resources on the APM website.4 Let’s determine that we will work together to ensure that our churches are communities where all are gifted, needed, and treasured.
1 https://www.childrenscommissioner.gov.uk/2022/03/16/the-big-ask-voices-shining-a-light-on-young-carers/#:~:text=The%20Children’s%20 Society%20says%20there,aware%20of%20their%20caring%20 responsibilities.
2 https://www.carersuk.org/images/CarersWeek2020/CW_2020_ Research_Report_WEB.pdf.
3 Roy McCloughry, The Enabled Life: Christianity in a Disabling World (London: SPCK, 2013), p. 49.
4 https://www.possibilityministries.org/resources/ caregiver-ministry-resources/