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Dementia Healing Garden Project(Click here for the video of the project)
Healing Garden at Persley Castle Nursing Home Aileen Barclay March 2012 This paper tells the story of the building and development of a healing garden project in Persley Castle Nursing Home in Aberdeen in a way that recognizes the spiritual nature of therapeutic gardening. The story is about creating an expressive space where relationships are encouraged as a way of reducing ‘empty time’. It is a story about creating a space where all of us can learn to ‘live in the moment’ with people in severe and advanced stages of dementia. (Swinton 2011) Background In my first encounter with the home, I noticed a large, sadly neglected garden at the rear of the house. Set on the banks of a river in an area known locally as a beauty spot, the home overlooks a beautiful turn of the river where the current flows swiftly, tumbling down over boulders, rocks and islands as well as being directed by the remains of the 19th century paper making engineering of mill lades and canal offshoots. Little use was being made of the garden apart from a small tired patio area with a few flowerpots containing the dead remains of summer plants. The unkempt grass was sodden, impossible to walk on in November, with slippery deep ruts and puddles. With the river view hidden by shrubs and bushes left to their own devices for many years, nevertheless, the timeless sound of the water, bird song and the rustle of ancient beech trees on the steep bank beyond the garden spoke a timeless language to me. I felt again the deep the sadness of having had to leave my ‘dementing’ husband, in the home as a full time ‘Service User’ a few weeks previously. Spiritual The word spiritual is bandied around as if we all know what it means, but at this moment, it was indeed a spiritual moment that led me to reflect in prayer somewhere between lament and despair (Barclay 2012). The notion of doing something about the garden came slowly to me, emerging from a confused sense of failure as a wife, compassion for those whose lives had become reduced to a timetable arranged around shift patterns, and a flagging trust in God. Here, though, I am using the term spiritual to encompass meaning, purpose, relatedness and a connection with nature through the deliberate practices of story telling, listening, remembrance, gift, awareness of the numinous, and closeness to nature through therapeutic gardening (Mowat 2011). Therapeutic gardening What is therapeutic gardening? Briefly, therapeutic gardening has developed in the UK and beyond, and is specifically designed to address the physical, psychological, social, emotional and spiritual needs of people who use the garden. (Trellis (Scottish Therapeutic Gardening Network) 2011). In relation to older people, especially those with dementia, a growing body of research (Chapman, Hazen et al. 2007) highlights specific benefits of access to the natural environment, such as:
Encouraging healthy relationships It seemed to me that encouraging healthy relationships among the residents’, staff and relatives would be the starting point (Goodall 2009). Taking soundings, it became clear that there was a great deal of interest in creating a garden as an expressive space where a different kind of care could be offered in addition to the normal routines of the home (Shura, Siders et al. 2011). Spending time with individual residents revealed a great love of the outdoors and a wistfulness arising from rarely being out in the fresh air (Cutler, Wise 2008). The manager of the home was keen for the idea to become a reality agreeing to put the notion on the agenda at the next relatives meeting. There, a gardening committee of volunteers (staff, relatives and residents) was formed although not all relatives were in favour of the project. The reasons given were that they would not like to see the garden as a ‘prison’ area and neither would they like to see the grass removed. The notion of prison arose from my suggestion that the first step would be to make the garden secure by erecting fences at both ends of the building with coded locks where residents who like to wander could safely spend time outside. The manager, however, thought it a great idea and agreed to provide the fencing. My husband and I agreed to paint the fences, which immediately provided a useful therapeutic activity. Swinton asserts that dementia is as much a relational disability as it is a physical or neurological one. Relationships, he believes are the primary way in which we might respond to people going through it because it draws attention to the vital fact that the essence of what it is to be a person and to remain a person may not lie in neurology but in relationships (Swinton 2011). Creating the expressive space Planning Taking advice from Harriet Mowat, a well known gerontologist, I wrote to the local School of Art and Design, asking if a student might be interested in becoming involved with the planning of the garden as part of a final year dissertation. Unfortunately, the request was not taken up. During this time, another relative offered to build a raised flowerbed in which residents would be able to plant flowers for the spring/summer. He had recently retired from a job as a surveyor and promised to draw out the garden to scale so we could think about how to develop the garden. In reality, the promise of a plan was not forthcoming but the raised flowerbed was erected in the centre of the garden with the idea that an accessible path could be laid towards it from the patio area. At the same time, I gifted a greenhouse where tomatoes, aubergines and courgettes were planted and cared for throughout the spring and summer. The building of the garden might better be described as a ‘happening’ rather than a plan, with areas added when there was money and willing volunteers. Raising money I wrote up a first draft of an action research proposal. Comments from Harriet Mowat were helpful in pulling together my ideas in a working format although I had not appreciated at the time how academic the paper sounded as a tool for raising money. Other relatives agreed to raise money but this did not come to fruition. I wrote to organizations and businesses that might look favourably on what we were trying to do. All in all I wrote over thirty letters to supermarkets, oil companies, voluntary organizations, a television programme about gardening, the Government and the Local Authority. A local supermarket was the only one who agreed to give something in the form of £30 of plants, compost and flower pots. Seeking volunteers I met with personnel from both the Council and from the Government’s employment schemes with a view to joining forces with them through the provision of meaningful work for longer term unemployed people trying to equip themselves for returning to work. Although in principle, the schemes are designed for such purposes, in reality, the complexities and hoops necessary to climb over were far beyond what one volunteer could manage so regrettably I gave up on the idea. Instead, I encouraged the garden committee in the care home to apply for charitable status with a view to applying to the small lottery fund for a grant. Again, there was much rhetoric but little action. Moreover, even opening a bank account necessary for a ‘Friends of Persley’ to be established, proved to be difficult both in terms of the law surrounding business banking and in finding people willing to have their names on a bank account. While a great deal of this early work was pretty fruitless, taking my eyes of the main aim of creating an expressive space, yet it was a great learning experience helping me to reshape the project in more manageable form. The church denomination A suggestion from John Swinton, Professor of Practical Theology at the university of Aberdeen—also a close friend, led me to apply to the Church of Scotland who were happy to grant £5000 for the project on the basis that most applications for Parish Development funding were for youth and children’s projects rather than for older people. Presenting the project proposal at our ‘Kirk Session’, it went through ‘on the nodd’. Still, it was clear to me at the meeting that our Session had not fully taken in the nature and extent of the project. Much later, our Interim Moderator (the church is in vacancy) asked if Session had realized fully the extent of the project. Silence and bowed heads told its own story although the decision made was to support me in the work I was doing through prayer and announcements to the congregation even though the grant had been awarded to Oldmachar church and not to me as an individual. Extracts from diary notes Residents As the relationships I had formed within the Nursing Home deepened, I noted down comments from staff, and relatives as well as residents ensuring that I made use of careful observations from those who could no longer express themselves verbally. Rather than having formal interviews, being the ‘participant observer’ seemed more natural now that residents were used to seeing me around the home three or four times a week. The home employs a system of recording ‘quality time’ sessions with residents. Although the notion is sound for management purposes, I found it to be a tedious task, difficult to complete under the headings identified. ‘Quality time’ is a nebulous term. (Kendall, Crawford et al. 2012). On the one hand it can refer to time during which one focuses on or dedicates oneself to a person or activity. On the other hand, in management terms, it can refer to a set or requirements aimed to meet a laid down standard. Quality in this sense is always a question of degree. The ‘Quality time’ sheets were kept in a folder in the Manager’s office and seemed to be more about meeting the requirements of Quality Themes set out in SCSWIS reports (Social Care and Social Work Improvement in Scotland) than about genuine interaction with people. Testing out my own initial thoughts about interviewing residents individually, I quickly gave that up as a barrier to sustaining relationships on the basis that it was carried out in my time frame rather than responding to people at times when they wanted to communicate with me. I found having sing-along’s, story telling sessions and ‘having a laugh’ together more productive for finding out where people were at and what interested them (MacKinlay 2004). By this, I mean that I spent afternoons with residents after the activities coordinator went home, just chatting to individuals and small groups or asking if they would all like to sing as a trigger for wider conversation and observation. During the summer months, going out in the garden on a fine day became a favourite location to ‘have a laugh’ together while some of us attended to flowers and plants and others sat in the sun. With specific reference to the garden, I noted comments in my diary in a rather haphazard way as I went along. Some examples below:
Non-verbal observations
Comments from staff
Religion While another church in the area held services at the home on a monthly basis apart from July and August, I offered to take services during the week where residents would be encouraged to participate rather than being the recipients of what others though convenient and suitable. This involved sharing bread and wine together remembering our friendship with each other and with God. It became a great opportunity to speak about the garden and to share the beauty of the outdoors together. I did not realize the power of a bunch of flowers on a brightly colored tablecloth as a confirming spiritual act of exchange and gift. Ambulant residents were keen to help out in passing the elements around, including a gift of a flower for everyone. Those still able to read were encouraged to pick favorite bible verses and share them with the group or to read a communal prayer. Holding hands during the saying of the grace became a welcome activity, highlighting the gift of a tender touch. On the down side, some residents became very agitated during sung worship, some in tears and others shouting for it to stop. This is quite at odds with the theological view of loved hymns being therapeutic (Swinton 2011) and would be worthy of further exploration. Sustaining the conversation It takes time to sustain conversation with frail older people and especially with those in the more advanced stages of dementia. Being ‘in the moment’ with people means recognizing and attending to times when a resident wants to communicate whether it is waving a hand to get attention, shouting out an unrecognizable sound or deliberately engaging in a conversation that on first listening does not immediately relate to anything that is going on (Swinton 2011). I did not always get it right but regardless, these ‘in the moment’ times were important for the residents. Even just a nod, a smile or a gentle touch seemed to satisfy when I was finding it difficult to understand. Activities in the garden A garden is always a work in progress and Persley’s garden is no different. With more able-bodied residents, selecting, choosing and planting flowers kept us going for quite a few weeks. Through word of mouth by a relative, a local garden centre gifted £300 of plants, compost and garden tools. Sorting out where plants would go continued the theme of the garden as a ‘happening’. The selected locations would not necessarily have been my choice, but if listening to older people’s voices is to become more than just rhetoric, then I though it important to go with the flow as it were. Digging holes to plant fruit trees took a half day, not just because of frailty but because it generated chat about how best to dig them. Conversations about ‘my garden’ brought to the surface a great deal of lost knowledge of gardening. (Woodward 2010) My gairdin wiz full of vegetables—tatties, neaps, carrots for the wife and even lettuce and strawberries… (My garden was full of vegetables—potatoes, turnips, carrots for my wife end even lettuce and strawberries.) Yi pit a lot a dung roon fruit trees ti mak them grouw (You put fertilizer round fruit trees to make them grow) We employed a Garden Services company to lay the accessible path and sheltered seating area. Clearing out the bushes in preparation for the seating area also took a great deal of time. Some residents were happy to watch, while others tried to make use of the secateurs and pruning shears, some picked up the rubbish and some stayed inside out of the way. One resident though, did come to tell us it was coffee time! This activity did require more than just me to supervise because of the tools we were using. Two of the male care staff were deployed to help, which again changed the dynamic. Both with big personalities, the chopping and clearing became a playful activity somewhat competitive to see who could fill a black refuse sack first. You cheated! That was my bag! The Home’s handyman cut the grass, but weeding is also a constant in any garden. Because the accessible path was not laid until the end of the summer, it was not always possible to encourage wheelchair users to participate in the raised flowerbed. The Activities Coordinator, though, took responsibility for planting pots to decorate the patio area. In some ways, weeding with older people is like doing tables with primary sixes. It’s something that has to be done but not always done with good grace. Two residents though, did take it on, even on days when no one was around to supervise. Of course, recognition of what is plant and what is weed is no different among people with dementia than it is among many of us but that in itself was a laugh! (MacKinlay 2004). Watering the plants in the greenhouse was built into the Home’s morning timetable, which was great, except that at weekends this did not happen when a smaller staff was present. Accordingly, not all of the plants survived but at least some did. The first ripe tomato created a great deal of delight. A volunteer from our Kirk Session who is a teacher at a local school, came to take photographs of the work in progress. Trained in dealing with young people with Additional Support Needs, he spent a morning with us producing images of the garden that were subsequently used to make cards, posters, key rings and photographs for fund raising and as gifts for relatives. He also took on the planning of a small putting green developing a partnership between the secondary school and the home, with the school donating some money to fund the project to be used as part of the pupil’s work experience placement. As yet, the putting green is not in place because the school is undergoing a school inspection but I have no doubt that it will come to fruition in time for next spring. Another member of my church who works on Information Intelligence for the NHS, came to visit the home with the Joint Future Planning Manager from Aberdeen Community Health Partnership (CHP)/NHS Grampian. There was a slightly nauseating discussion about the wonderful work that I was doing and the offer to publish a short article in the Older People’s Newsletter produced by the Joint Planning Team, which I subsequently wrote. Overall, the development and building of the garden as a context for meeting spiritual needs as I have written it sounds quite idyllic. Of course, it is not! Malignant moments Kitwood refers to dementia as a ‘malignant social psychology’ in social environments where forms of interpersonal interactions and communications take place that diminish the personhood of those people experiencing the environment. (Kitwood 1997). Malignant moments are not merely confined to individual encounters but encompass the physical, social, emotional and spiritual aspects of life in a nursing home. The timetable is the important thing. Getting people to the toilet at specific times, moving through to the dining room for meals, unannounced visits from other professionals, getting up and going to bed take precedence over ‘quality’ encounters, such as those above, with residents. The singsong has to stop, the walk round the garden takes second place, and even the tea trolley interrupts. In some ways, it is like an infant classroom where every child learns to obey the teacher, sitting up straight, not moving out of the allocated space and being ‘helped’ back to their seat if they disobey. A weasel like malignancy broke through the regular routines of the home when the landlords went into administration. Uncertainty among the staff about the future of their jobs, confusion among the relatives about what might happen to their loved one, visits from MP’s spouting political rhetoric, coupled with the resignation of the very able manager all contributed to the insecurity. Swinton’s notion of forgetting and being forgotten (Swinton 2011) seemed to me to plunge the political darkness of how our older people are viewed in a society that puts the worship of Mammon before love (Galasko, Todd et al. 2009). The hard work, the happy, easy going relationships and clear signs of a more relaxed form of care in the home easily upset, and not least for me in relation to my husband’s future care. Discussion My sense is that the person who has learned the most from the experience of building and developing the garden is me, in a significant number of ways. I will refer to the lessons throughout the discussion. I will use the spiritual descriptions set out earlier as a framework for the discussion, and as a beginning towards an evaluation of the project. Finding meaning The Demise of Southern Cross Care certainly had a devastating affect on the Home in general as well as the Garden Project. With no one truly in charge, and working in ‘no man’s land’ as it were, some plans had to be scrapped for the time being, while others fell off the agenda as capable staff left to go to new more secure jobs. Contrary to media reports that claim changes of Care Home ownership make no difference to the care Service Users receive, my experience at Persley draws attention to just how much difference it does make. I have come to hate the term ‘Service User’ seeing it as a cold, abstract professional term that seems to attempt to anesthetize us against thinking about frail, human beings in any meaningful way. Older people in this sense become commodities, something to be bargained with on the open market. Awareness of the numinous Religion in the sitting room! For me, this is an area fraught with difficulties. My own preference would have been to make use of the smaller sitting room thereby giving some choice to those who have no interest in religion. However, the nursing staff was of the view that everyone was Christian and therefore there was no need. I am still unsure about this stance. On the other hand, no resident ever expressed the view that they did not want to be there. However, a few members of staff were more open in their objection to ‘forcing’ people to take part in religious activities. This issue was never resolved. On the positive side, awareness of the numinous among residents was not in any way defined by religious activities but more through their comments and reactions to time spent together both in the garden and through conversation as seen above in their individual statements. Finding Purpose Listening to residents through friendship seems to me to be a key to unlocking and understanding some of the confusion in the lives of people with dementia. Although in research terms the way I understood and applied ‘careful listening’ would not be seen as real research, in this project, but I believe it was a more appropriate way of trying to find out what would give purpose to the lives of people who are largely forgotten by the wider community and also spend a great deal of their days sitting in armchairs with the TV blaring or wandering aimlessly around the home (Mason 2002). Jean Vanier speaks about the gift of friendship being a two way process. (Vanier 2003) Others are right in noticing that not all gifts are welcomed as much as others (Swinton 2003). At the beginning, I think I retained a self-important view of myself as a kind of gift to the home. It was like forcing myself to get on and do some transformative work even though in my heart, I knew it was not what I really wanted to do. However, as I got closer to all members of the community, I began to realize what a gift the staff, relatives and residents were to me. I don’t suppose I expected to grow fond of people whose noses drip, who spill their food, soil themselves or make senseless noises, but I did. For this reason I like Swinton’s use of the term ‘wilful love’ (Swinton 2011). It is not the same as duty. I may have had a duty towards my husband, but not so for the other members of the community. Wilful love seems to me to be more about letting the lifeblood of the human spirit direct action and being able to recognize the blessing that accompanies it. It does seem to be related to compassion. The word compassion works two ways I think. I may have felt a great deal of sympathy for the residents, but they demonstrated a great deal of love to me through cuddles or downright cheek from those whose cognitive abilities remain relatively intact. Relatives and staff too showed love through their interest in my personal anxieties with my husband, as he grew more difficult to manage as well as asking how the project was shaping up. ‘Having a laugh’ is a notion that needs to be further reflected upon. The importance of play for all stages of life is not particularly well understood in relation to older people but from my teaching career among children, having fun is as equally important as plowing through the demands of the school curriculum. MacKinlay is right when she notes that the ageing process is not all fun and laughter, but she also recognizes that the ability to laugh is often a healing milestone for people suffering from the indignities that accompany old age (Mackinlay 2004). Encouraging relationships A pervasive issue throughout the project was not only the difficulties of encouraging people to volunteer but about the issues that arise when volunteers are present. For example, the raised flowerbed was built without any discussion as to whether it was in the best location. However, since the man in question was willing to do the manual work as well as supplying the materials, I did not raise objections. Moreover, knowing the depth of guilt I felt at placing my husband in residential care, I worked from the premise that this man too might be feeling similarly about his mother, and therefore needed to be involved in a practical activity aimed at helping the residents. As time went on, however, it became increasingly obvious that there was a real training need among relatives and staff alike, to encourage residents to do the work that was needed rather than doing it themselves which was of little therapeutic value. In spite of gentle prompts, it did seem as if the work in the garden was serving a personal need among those volunteers present. Further observation would be needed to see if this in fact the case, although I, too, often felt like taking over. Vanier speaks about the amount of patience that is required among the volunteers in L’Arche Communities, asserting that we have to work together in God’s time rather than human time. (Vanier, Hauerwas 2008) This is something I am still learning. Before the demise of Southern Cross Care, the home was extremely well led and managed by a very able Muslim man who came to Aberdeen to study for his PhD in Acute Heart Nursing. He was a very visible manager, not slow to draw staff attention to practices that he thought needed to be tighter. However, when he left to take up an academic post in Jordan, the standard of care diminished rapidly. There is something about “peanuts and monkeys” in the mess of a Nursing home in administration. Staff paid on minimum wage, whose jobs are no longer secured, and with the future of the home uncertain, do not mix well in terms of providing consistent care. Several able staff left within a week to take up jobs in other care homes. Those left very quickly resorted to comments such as “not my job” or promising to do something that subsequently was not done, including keeping many residents clean. As staff levels reduced so to did the availability of personnel to continue with the therapeutic activities in the garden. I was disappointed but it was clear to me that no further development could be made with the garden until the home had new owners and the period of administration was over. Overall, this took six months during which time, my husband’s health deteriorated significantly requiring that he be moved to an EMI unit elsewhere. Overall though, I think the project has much to merit it even if it lasted only for a year. I think building the garden in itself was therapeutic for many of us, especially the residents. The deepening of relationships and trust that came into being between some of the staff and myself made it much easier to ‘teach’ on the job as it were rather than through tailored professional training courses. Learning to truly listen to what the residents wanted and being patient by encouraging their efforts to participate, even if it did sometimes raise my blood pressure is a significantly important lesson for all of us. Moreover, recognizing that ‘having a laugh’ together is a spiritual activity that helps all of us transcend hopelessness, boredom and sadness is wonderful gift. And at the heart of it all, the gift of friendship that can transcend professional, personal and client boundaries is something of immense value. Translated from the German Mitleid, compassion is not sympathy understood as ‘power over’ another but as ‘suffering with’—mit Leid. Compassion is not about fellow feeling or about looking pityingly from a distance but about identifying and entering into solidarity with the other in the highest possible way. In our confident accounts of what we do, we can delude ourselves about the unending possibility of human potential which can prevent us from entering into solidarity with others in the highest possible way. (Barclay 2009, p. 269-10) References BARCLAY, A., 2009. On Becoming Educators of the Cross: a Faithful Christian Response to Pupil Disaffection. University of Aberdeen. BARCLAY, A., 2012. Psalm 88: Living with Alzheimer's. Journal of Religion Disability and Health, 16(1), pp. 88-101. CHAPMAN, N.J., HAZEN, T. and NOELL-WAGGONER, E., 2007. Gardens for People with Dementia, Journal of Housing For the Elderly. Journal of Housing For the Elderly, 21(3-4), pp. 249-263. CUTLER, D.M. and WISE, D.A., 2008. Health at Older Ages: the Causes and Consequences of Declining Disability among the Elderly. Chicago: University of Chicago Press. GALASKO, D., TODD, G. and WILCOCK, G., 2009. Join Advocates for Increased Alzheimer Research Funding at Public Policy Forum: Your Voice Has Never Been More Important. Alzheimer's and Dementia, 5(2), pp. 197-198. GOODALL, M.A., 2009. The Evaluation of Spiritual Care in a Dementia Care Centre. Dementia, 8(2), pp. 167-183. KENDALL, T., CRAWFORD, M.J., TAYLOR, C., WHITTINGTON, C. and ROSE, D., 2012. Improving the Experience of Care for Adults using NHS Mental Health Services: Summary of NICE Guidance. BMJ, 344(1089). KITWOOD, T., 1997. Dementia Reconsidered. Buckingham: Open University Press. MACKINLAY, E., 2004. Humour: A Way to Transcendence in Later Life? Journal of Religious Gerontology, 16(3-4), pp. 43-58. MASON, J., 2002. Researching Your Own Practice: the Discipline of Noticing. Abington, Oxon: Routledge. MOWAT, H., 2011. Voicing the Spiritual: Working with People with Dementia. In: A. JEWELL, ed, Spirituality and Personhood in Dementia. London: Jessica Kingsley Publishers, pp. 75-86. SHURA, R., SIDERS, R. and DANNEFER, D., 2011. Culture Change in Long-Term Care: Participatory Research and the role of the Resident. The Gerontologist, 51(2), pp. 212-255. SWINTON, J., 2011. Being in the Moment: Developing a Contemplative Approach to Spiritual Care with People who have Dementia. In: A. JEWELL, ed, Spirituality and Personhood in Dementia. London: Jessica Kingsley Publishers, pp. 175-185. SWINTON, J., 2003. The Body of Christ has Down's Syndrome: Theological Reflections on Disability, Vulnerability, and Graceful Communities? Journal of Pastoral Theology, 13(2), pp. 66-78. TRELLIS (SCOTTISH THERAPEUTIC GARDENING NETWORK), 1/9/2011, 2011-last update, Supporting Health through Horticulture. Available: http://www.trellisscotland.org.uk/ [9/9, 2011]. VANIER, J., 2003. Finding Peace. London: Continuum. VANIER, J. and HAUERWAS, S., 2008. Living Gently in a Violent World. The Prophetic Witness of Weakness. Illinois, USA: InterVarsity Press. WOODWARD, J., ed, 2010. Between Remembering and Forgetting. London: Continuum Publishing Corporation. ‘Empty space’ a phrase used by Hans Reinders, Professor of Practical Theology and Ethics at the VU University of Amsterdam. (Reinders, 2007) It refers to the notion that western culture is dominated by a secular notion of time, which entails that time has no meaning other than the meaning it acquires through human plans and purposes. Especially useful in a Nursing Home, empty space resonates with what Kitwood refers to as the technical approach to person centred care ((Kitwood 1997))
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