Frontline readers may recall a piece in issue 73 (2008) on the Pastoral Support Service offered in Muiríosa Foundation. This article is based on a conversation with Sister Ann Devine and Sister Kathleen O’Connor.
The Pastoral Support Service has grown to become an integral part of the support service that is hallmarked by the essence of inclusion in the ultimate recognition of the importance of spirituality in the lives of all stakeholders, especially for staff in their daily work with people with intellectual disability, the individual families and broader society.
The Pastoral Support Vision Statement is: As a Service we will support the life of Christian values and the value of other Faith traditions. Acknowledging each other as Spiritual Beings, we will work together in a spirit of love and joy conscious of the sacred trust placed in us.
As part of the Pastoral Support work Sr Kathleen and Sr Ann work with people bereaved. ‘When someone dies it is always a shock … even when it is expected. The finality of death itself really hits us all … people with intellectual disability are no different in this regard. It is our challenge to ensure that they are supported in the process the same way as you would support a friend or close relative.’
Sr Ann reflects that the pastoral support service is not so much about itemising what you do: ‘I was at a wake and a funeral last week,’ but rather about the process. She goes on to say: ‘We need to be mindful of families thinking around death. We need to start with conversations about LIFE.’ Issues around death and dying by right need to be addressed as part of a Life Plan.
In the context of our person-centred plans and care planning, there is a section on end of life. This information can be specific, even technical. For example a resident, Mary (age 67 years) tells her keyworker, ‘When I die I want to be buried in that graveyard…’ Mary knows what she wants to happen at a concrete level. This provides an opening to discuss deeper issues.
A mother of a lady with profound disability states she’d like her daughter to have a funeral service in the local Church of Ireland chapel. Preparedness around what happens when someone dies can alleviate a lot of stress and anxiety, particularly in Ireland, where funerals are likely to occur very quickly. Sr Ann recalls her own father’s demise and advises on the importance for the bereaved of taking a memento of the person. It can be something small. She treasures her father’s cap, and she advises that often a photograph or a personal item like a ring or prayer book can provide tangible comfort to the bereaved.
The funeral service itself can be enhanced when the preparation includes readings, gifts, and music that reflect the essence of the person, thereby creating healing memories. The music can act as a catalyst for release of heartfelt emotion that, once expressed, can free the bereaved to lighten the burden of grief. These practical actions, Sr Ann reminds us, are just as important for the family member with intellectual disability as for any other family members. ‘Death is a common life event to us all. It is a leveller. Exclusion is not on the agenda. We shouldn’t think it isn’t the same for all of us. The person may need greater supports, but we can do that!’
Sr Kathleen O’Connor states that when a parent dies it’s important to realise that other family member are in a ‘state of flux’, so as much discussion with families beforehand on the precise type of support the person with special needs requires is helpful. Sr Kathleen holds that ‘the key to coping with grief is developing coping skills for life.’ She asks ‘How does the person cope with illness, loss, separation and life transitions.’ Sometimes death ushers in other dramatic changes to the individuals circumstances. For example, when the home place is closed up on the sale of the house, this can be more difficult depending on how it is handled. She urges that we do not ‘shy away’ from these potential difficulties, but rather that they are embraced with openness, transparency, and with equality in mind. Sr Kathleen focuses on ‘the opportunity for creativity out of hard challenges around death and loss,’ if inclusion is the ‘norm’. The death may seem like the end, she says, but it’s the beginning of a process. the fundamental question she poses is ‘How does our spirituality enable us to cope? We are all a link in a chain of the continuum of life and death. We are all part of the fabric.’
She asks: ‘If the person wasn’t there with us, how would our lives be different? The child with intellectual disability impacts on our lives and in some ways becomes our teacher! This is especially true in the way our faith, hope and charity are challenged.’ Sr Kathleen shares her beliefs that ‘a loss in our life actually creates a space for something creative.’ Sr Ann points out that ‘you have to dig a hole for a plant to grow! Life is a journey. The path we follow will be easier if we engage in conversations about life’s journey along the way. Death is not like extinguishing the light, but rather putting out the lantern because the dawn has broken. Sr Kathleen O’Connor draws inspiration from Blessed John Henry Newman: ‘God has created me to do him some definite service; but he has committed some work to me he has not committed to anyone else. I have my mission; I have my part in a great work. I am a link in a chain, a bond of connection between persons.’