Home is where the heart is

by Sean Bohan

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Marie is a 57-year-old woman. She came from Athlone to live in Moore Abbey Institution in Monasterevin in 1980 and she lived in what was known as ‘Main House,’ in a large unit style setting for group living. During the 1980s, Marie moved into a community residential house with 4 other people and she attended a day service with 16 other people. Marie’s typical day consisted of attending the day service Monday to Friday 9am-5pm, where she took part in activities such as Special Olympics, recreation, arts and crafts. She returned to her community residential home each evening. Marie was very quiet—she would have got lost in the crowd, lacked confidence and found it difficult to make her own decisions.

Early in 2010 Marie began to be supported by the Person Centre Wing of the Muiríosa Foundation which was set up in October 2009 with my support as Coordinator. I began to work with Marie, using the social role valorisation framework. I had also known Marie previously, when I worked in Marie’s day service. I began the process of ‘discovery’—really getting to know who Marie was as an individual. Even though I thought I knew Marie before as her key worker in the day service, I really only knew her basic likes and dislikes, her interests—the the usual tick-the-box information we traditionally had to know. Looking back on the discovery process now, three years later, I realise I really did not know who Marie was.

As a coordinator we look at valued social roles (SRV) for the people we support—as a tenant, a friend, a neighbour, an employee or employer. For Marie, the fundamental need was to look at where ‘home’ was. When I was first getting to know her, people said that Marie could not make decisions—that she would be unable to decide where home was for her. Both her family and other support people said that Marie’s life was in Kildare, as she had lived there for the past 30 years. So Marie and I began to look and discuss what a home was and where she would like to live. We viewed houses in the areas Marie had lived. It was obvious early on that if I, or other people involved, led her to what we thought was best for her, she would just follow our lead. So to support Marie to make choices, I had to give her options—starting with three choices of something like—where would you like to go today? I would also put a ‘red herring’ (an option I knew Marie would not like) and whether, if I put a positive emphasis on that option, Marie might agree, just because I said so. I found Marie would often do that, because living in group homes had taught her to accept a preset option—what everyone else was doing. I also gave Marie opportunities to make small decisions in everything that we did to support her, in order for her to gain the skills and confidence to make larger decisions. Slowly I saw that Marie was building confidence and making decisions for herself- Other people also saw changes in Marie—she was beginning to have a voice. One day, when I suggested three places where Marie might want to live, she came up with an option of her own, not one of the three I had given her. Marie said ‘Athlone’. She wanted to move back closer to her family. We decided to visit Athlone twice a week to really see if this was what Marie wanted.

By visiting Athlone every week for about 4 months it was obvious that Marie did want to live back there. Each visit was a trip down memory lane for her—with memories of different places from her time growing up and people she and her family had known. So we decided to test the waters carefully—we all know sometimes we have desires and dreams, but the reality may be somewhat different. We looked at a ‘try before you buy’ option for Marie to experience life in Athlone. We met different estate agents and found a suitable house in Monksland Athlone. The day we helped Marie move in, I realised that her entire belongings fit into two small cars, and it was obvious that even though she had lived for 30 years in Kildare, she had really never made a life for herself there.

We looked at how Marie could make connections in her new community; the best place to start was in the role of ‘neighbour’. Marie always liked baking, so she made scones and delivered them, on china plates, to all the surrounding neighbours and introduced herself- This was done with ‘purpose’ and ‘intention’; the neighbours would return the plates, giving Marie another opportunity to make connections, invite the neighbour in for tea and ask them what was happening in Athlone socially. This was all new for Marie—she had never known what being a neighbour was. Her support staff had to teach her the social skills to be a neighbour. Marie easily made friends with one neighbour in particular, because of their common interests. Marie now attends a social group weekly and she has made great connections and is continuing to have new opportunities and experiences.

Through our work we acknowledge the importance of the role of the support worker. Marie interviewed and recruited three support workers based on common interests, their connections within the community of Athlone and what value they could add to Marie’s life. They have helped her to become not just a presence, but an actual participant in her community. Marie really does have a life now, not a service. Marie is now a volunteer in both her church and with Meals on Wheels, enabling her to fulfil the ‘volunteer’ role and give back to her community. This is important, as the people we support are often seen as ‘charity’, on the receiving end of services, rather than as someone contributing their skills and gifts within their community. Marie also is involved weekly in her local women’s social group and her active age group and she attends a local prayer group once a week.

Marie also wanted to have a job. She has now begun to sell homemade jams, marmalades and chutneys in local markets, shops and hotels—currently she has five sales outlets. Marie also restores and stresses second-hand furniture to resell for customers and this has led her to be self-sufficient and to hold a valued role of ‘entrepreneur’ and ‘business woman’.

Marie had 24-hour residential care when she lived in Moore Abbey and in the group homes. Marie now has support workers for 50 hours per week; they have supported Marie to make decisions and helped her to become independent within her home and her community. Marie also has assistive technology which provides 24-hour monitoring when she is alone in her home. Marie can talk to a support worker via a pager, and one of five people assigned will respond to her call, if the need arises. This system also includes sensors which are activated if water or a cooking appliance is left unattended. If someone calls to Marie’s door, she can press a button and the monitoring company can listen in. This system has given her independence, but it also ensures that she is safe.

For all of us, family is a most important part of our lives. Moving back to Athlone has helped Marie to recapture that part of her life too. We forget that the people we support should and can play the role of ‘son’ or ‘daughter’, or valued relative. For Marie this is the role of ‘cousin’. She has reconnected with her family and has been able to attend family weddings and celebrations, and to spend Christmas with her family. She also continues to rebuild connections with old family friends.
The real lesson I have learned throughout this journey with Marie is that if we support her to grow and develop as a person—keeping our expectations high—she can do everything she wants. The person who really made this happen is Marie herself—not me, her support workers, or family. We have just given her the opportunity to have options, to experience new opportunities and to make decisions. For Marie to lead her life according to her own vision, and not what others see as their vision for Marie. This is still only the beginning of that journey for Marie, but ‘home really and truly is where her heart is.’ FL

Sean Bohan is a coordinator for the Person Centred Wing for the past 3 years. Sean studied as a social care worker for his degree in the Open Training College Marino for 3 years. Sean currently provides support services to individuals with intellectual disabilities in partnership with their families for the South Kildare Region. The Person Centred Wing also works in Laois/Offaly and Longford/Westmeath.

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