A home from home at the end of life

 A-M StruijkMessage from the Management Committee 2016

Without doubt, the high point of this year 2016 was the garden party, held in the presence of the communal authorities, to celebrate the first five years of La Maison de Tara. The day unfolded under a golden summer sky and we were so grateful for the oases of shade from the marquees that the Commune de Chêne Bougeries had kindly provided for the occasion. Over a hundred guests joined the celebration including residents’ family members, past and present volunteers, collaborating medical professionals, members from the Board of Trustees, and of course residents themselves.


We were enchanted by the gentle strains of a harpist playing for us during the meal. Then, in a change of pace, we were regaled by a group of South American musicians inciting everyone to get up and dance, including even one of our residents. Another resident took the microphone to make a very moving speech expressing his gratitude and appreciation to Tara, which deeply touched us all.


This wonderful day encouraged us to look back on the past five years of Tara and the journey covered. We mulled over all the special shared moments with residents and their loved ones; all the friendships strengthened by the intensity and intimacy of those days and even weeks; and all the unforgettable stories and lessons of life gathered over this time. The sense of pride and gratitude was tangible throughout the whole day’s celebrations.


Another high point of 2016 was the award to Anne-Marie of the Robert-Scheimbet prize by the Geneva Society for Public Services, which she chose to receive in the name of all the volunteers at Tara. This award was created to “distinguish those people who have simply, modestly, discreetly, over a number of years, carried out what they consider to be their duty, both for themselves and for their kin, without any thought of recompense or reward”. The volunteers of La Maison de Tara were extremely touched by this token of recognition for their indefatigable commitment.


We also participated in the “Exposition proches-aidants” (Exhibition for Carers) in Chêne-Bougeries from 9-11 February 2016. This theme is one that we hold dearly since we are particularly well-placed to notice the many difficulties encountered by carers and the burden they must bear when a long-term illness strikes at the heart of their family. At the official opening ceremony in the presence of the cantonal authorities, Anne-Marie had the chance to present (La Maison de) Tara to all those present.


And so the weeks and months of this year were punctuated by many joyous occasions. Various celebrations such as birthdays, and even a marriage, were held in the intimacy of the dining-room at Tara. The couple’s solemn commitment was presided over by the Registrar of the Town Hall of Chêne-Bougeries, who herself was greatly touched by the occasion. And she was certainly not the only one to be moved by this couple’s exchanging of vows by the side of their three-year old little daughter. It was yet one more proof that La Maison de Tara is well and truly a place where life is celebrated right up until the very end.


Our training programme is also one of the keystones of Tara. Every year, two classes for new trainee volunteers are offered – one in English and one in French. In this way, we are able to “refresh” and to “renew” the team of volunteers, year on year. This programme is greatly enjoyed and appreciated by those who commit to the full year. In addition, we organised and offered two full days of training held at Webster University in Bellevue. Not only were all the volunteers invited but also some outside health professionals from both Geneva and neighbouring France.


The first of these days, held in June, was led by Mme Rosette Poletti who covered the theme “Accompagnement des proches de personnes en fin de vie pendant et après le décès.” (How to support those involved in the care of the terminally ill, both during and after death). She was followed by Mathieu Bernard on the subject of “La gratitude dans le contexte des soins palliatifs” (Gratitude within the context of palliative care) and then Dr. Yves Beyeler speaking about his own personal experience under the title of “Un médecin, ses patients, la maladie et la mort: 40 ans au rétroviseur.” (One Doctor, his patients, illness & death: A retrospective on 40 years)


The second day’s instruction in October was led by Tanguy Châtel who inspired and questioned us on the subject of “Accompagner la souffrance spirituelle en fin de vie” (How to support and be present for the terminally ill and their spiritual suffering).


In addition, two of our own Tara teachers participated in the teaching of a module on “Accompagnement de la personne en fin de vie et ses proches” (How to support the terminally ill and their carers/loved ones) part of the regular HUG ongoing training programme.


When one of our residents dies, we have made it a point to organize in-house meetings between the outside professionals, our staff and the team of volunteers. In this way we encourage an exchange of knowledge, values, experiences and a measure of self-interrogation which almost inevitably follows the close collaboration of those involved. This dialogue is an invaluable learning and enrichment tool, while never minimizing the inevitable suffering which accompanies the end of a person’s life.


Once again, this year, the fundraising effort was very successful and we are forever grateful to all those people and organisations, who by their generosity, encourage and enable our work. We were supported by over 240 individuals, communes and institutions. This number is impressive and allows us to contemplate 2017 with a measure of serenity.


Next year, from 16-18 November 2017, Geneva will host the 4th International Francophone Congress for Palliative Care. La Maison de Tara will of course participate. We very much hope that this important event will shine a light on the increasing knowledge and support available. The valuable work being done in this field, by professionals and volunteers alike, is even now too often little known and recognized.
And so, as we look forward to the next five years, La Maison de Tara remains steadfast to its special mission “to be a home from home, where every life is celebrated right to the very end.”

 

 

 A-M StruijkMessage from President 2015

After four years fully operational, we can now say with confidence that La Maison de Tara provides a number of fundamental requirements in the matter of care-giving for those at the end of life:

  • There is the need to compensate for the absence of supporting family members in a changing society - a working spouse/partner, families spread and living far from one another……
  • The widespread need of support for both the sick person and their families at this particular time in their lives and ideally within a close and caring environment.
  • The wish to avoid or to limit the need to be “automatically” hospitalised at the end of a person’s life.
  • The need to encourage care-givers (volunteer and health-care professionals alike) to administer basic palliative treatment within the home environment.  
  • The hoped-for benefit that our society will change its attitude about the subject of death and the end of life.

 On reflection, we came to the realisation that the key to the success of our work is in the care of the patients’ family members. In fact, we have clearly seen over and over again that one of the chief sources of worry for someone who is gravely or terminally sick, is the effect their illness has on their loved ones. Our residents are relieved to see their friends and family members supported at any given moment.

 

How can we support the carers?

By the round-the-clock presence of staff, both professional and volunteers, who are there to listen to them at all times. Of course, the helpers need assurance that adequate and timely care is being administered, but also to know that they may express their own suffering, and voice any questions they have relating to death.  That they are free to express their own fatigue, and doubts, their disappointments and anger, their memories – both good and bad ones - their regrets, their hopes and fears; all of those questions that one naturally wants to ask when confronted with the imminent death of a loved one.

Families also tell us just how much they appreciate not having to think about the daily chores of washing, cleaning and cooking, freeing them up to spend quality time with their loved ones.

One of our fundamental objectives is the training and experience-building of our volunteers. In fact, independent of the volunteer work they do here at Tara, it is inevitable that our volunteers will all one day be a carer for one of their own family members or within the community.  When that happens, they will be very well-prepared, thanks to all that they have learned and experienced during their time at Tara.

Our volunteers too, express how rewarding the experience is, gained during their training AND in the course of their interaction with the residents.  They come to the realisation that their own perspective on life and death changes over time.   Learning just “how to be” in the context of suffering at the end of life is a privilege often received with grace and thanks.

And those at this moment in their life are true teachers who can show us how to acquire courage and kindness. The experience teaches us to be non-judgmental, to have patience and tolerance and to open our hearts even under difficult circumstances.  To accompany such people is a valuable life’s lesson and allows one to rethink personal priorities and to give real sense to one’s life.
In June of last year, we welcomed Frank Ostaseski who hosted a two-day seminar at Webster university. The theme of this training was on the importance of developing wisdom - not only with the residents and their families, but also with the carers and all those with whom we collaborate at La Maison de Tara.  Together, we worked on developing our listening skills, how to be present and also how to safeguard our emotional equilibrium.  Frank’s teaching was pragmatic and enormously appreciated by all the participants who enjoyed also this opportunity to share their experiences from their work at Tara.

The number of our volunteers remains stable on the whole.  Over the course of the years we have been able to count on more than one hundred volunteers.  They come from all walks of life and not just those who have retired from active work as one might imagine.  Two thirds of our volunteers are still active professionally and ever more young people are joining our ranks.  Over the course of 2015 we trained a further 30 new volunteers.

Each Summer, as is the custom, a “Fête de familles” is held in our magnificent garden with the participation of staff and volunteers.  This year was no exception.  With the kind support of the Commune de Chêne Bougeries, the event was a great success with music and even dancing under the marquee.  On this occasion we gave our thanks to two staff members who were leaving and welcomed a new member into the fold.

In addition, the group “Ma non troppo” once again lent their support to Tara with a musical show of amusing scenes around the airs and duets of Mozart, Rossini and Offenbach.  This entertaining concert enabled us to make a collection for La Maison de Tara.

In general, our fundraising efforts have been productive this year allowing us to go into 2016 confident that we can fulfil our mission.  Of course this does NOT mean we can sit on our laurels, but must go on steadfastly in order to make sure we cover our running costs.

At the beginning of the year following a meeting with Mr Adrien Bron, Director of the Department of Health, we received the official go-ahead to promote the services of La Maison de Tara within the healthcare network of the canton of Geneva.   In the Spring, we had a visit from Mme Marie Da Roxa who is the Director of IMAD (the official organisation for home healthcare in Geneva) resulting in a closer collaboration with their healthcare professionals.

We are successfully collaborating now on a regular basis with the hospitals, the clinics and the various home help organisations as well as numerous doctors.
At this year-end we can look back with pride and pleasure on a year full of activities and exchanges, happy in the knowledge that La Maison de Tara has found its rightful place amongst the various organisations which make up the healthcare network here in Geneva.

 

Full annual reports (in French only) are available on request to La Maison de Tara. 

 

A-M StruijkPresident's report for 2014

Palliative care calls into serious question our present societal norms on numerous levels - expertise, speed, performance, results and esthetics - while raising other issues such as interaction, presence, care, and responsibility.  La Maison de Tara is part of this broad perspective, accompanying residents and their loved ones with its team of volunteers, both men and women, whose work fosters the role of civil society in the journey towards the end of life.  This shared journey creates a close relationship between carers and residents which benefits all.  The residents and their relatives benefit from such caring support in a welcoming environment, while the volunteers have the opportunity to enlarge their life experience, which brings benefits for their own families and friends.  We therefore feel justified in believing that this approach offers a little less fear of death, together with a little more support and serenity. 

At the beginning of 2014, the Board undertook an in-depth analysis of the three years of La Maison de Tara’s existence.  We sent questionnaires to the volunteers and the doctors involved, and carried out interviews with the Tara staff, as well as with representatives of the various home help organizations with which we collaborate.  The results of this enquiry encouraged us to make a number of organizational changes, particularly in respect of increasing the nursing capaciy.   

After three years in operation, we are clear that residents and their loved ones are extremely appreciative of the kind and familial atmosphere of Tara.  And this year,  the results of a questionnaire sent to all families after the death of a resident show an even greater level of appreciation than before.  They particularly stress the quality time they can spend with their relative, instead of the chores and problem-solving so much an inevitable part of care in the home.  A very moving video account by one of our residents and her daughter of their experience is available on our website (www.lamaisondetara.ch/testimonials). 

Concerts, birthdays, and evening celebrations have been organized by and for our residents and their loved ones.  These festivities show that La Maison de Tara provides a suitable environment for celebrating life, with its pains and pleasures, right up until the last days.The number of « trial stays » has doubled since their initiation in 2013. Their purpose is   to provide potential residents with an opportunity to discover how La Maison de Tara functions before they reach the final stages of their lives.  Some then return home while they can, while others decide to stay on to enjoy the quality of life Tara offers.

More than a hundred volunteers carry out a wide variety of tasks related to residents’ and families’ needs and wishes, in close collaboration with the formal staff.  A dozen volunteers look after the gardens – a source of peace and pleasure for everyone at the house. 

During a two-day seminar hosted by Webster University, we had the privilege of welcoming Mrs Christine Longaker, whose book « Finding Hope in the Face of Death » has been translated into 23 languages.  With her, we deepened our ability to show compassion both to ourselves and others,  increasing our personal understanding of our residents’ needs and the most suitable ways of being present for them in the face of distress and suffering.   

In May, to fund-raise and promote the hospice, sponsored runners in Tara T-shirts -  organized by a family member of one of our residents - participated in the Geneva Marathon.  As last year, the Holy Trinity English Church organized a lottery in support of our foundation.  The American International Club selected La Maison de Tara as its main fund-raising focus for 2014, and the Geneva Amateur Operatic Society invited a member of the Board to an event to publicize our work.  This created support and solidarity amongst the international community for a very Genevois cause ! 

It goes without saying that the present economic climate makes the identification of major donors more difficult, so we are even more grateful to those who remain supportive over the years.  It is also reassuring to note that even modest donations increase year by year, providing significant sums over time.  Such donations are also valued in respect of the ever-closer links they create between La Maison de Tara and the whole Genevois community. 

Higher visibility within the Geneva care system will allow us to welcome a greater number of residents in the coming year.  Our collaboration with the Direction de la Santé of the Canton of Geneva is more and more active, as La Maison de Tara represents, in their eyes, an interesting alternative to the usual hospitalization of patients arriving at this phase of life.  A video presentation of La Maison de Tara (French only) is now available on the website www.palliativegeneve.ch, section ‘Particuliers’.     

While the major role played by La Maison de Tara in the lives of residents has been evident from the outset, the year 2014 has allowed us to demonstrate more clearly its many benefits to their families and friends.

Anne-Marie Struijk-Mottu
President,  La Maison de Tara Foundation  

A-M StruijkPresident's report for 2013

The Swiss National Scientific Research Fund is running a nation-wide research programme on the topic of end of life.  Its aim is to help create appropriate social policy responses to the question of how people in Switzerland wish to die.

To follow up on and respond optimally to these investigations, further resources will be needed and new solutions identified.  La Maison de Tara is already participating in this initiative, proposing a different approach to the range of options Geneva currently offers to those arriving at the final phase of their illness.

Two years into its existence, we feel that the aspect most appreciated both by the residents and their loved ones is the open, welcoming, and family-oriented approach of Tara.  They tell us how the support, assistance, and love they receive give them strength to face their difficulties in the best possible conditions.  In particular, family members appreciate the time they can devote to simply being with their loved one, rather than struggling with the intensive care and attention their sick relative requires, as is often the case in the home setting.

Concerts, birthday parties, and evening festivities are among the celebrations that have been organized at Tara by and for our residents and their loved ones.  These festivities clearly demonstrate how La Maison de Tara is providing a suitable setting for accompanying the dying, with all the attendant joys and sorrows, right up to the final days.

The “trial periods” initiated this year offer people the opportunity to experience and enjoy the atmosphere of La Maison de Tara well before they reach their final days.  Following a trial of this kind, patients can return home with the knowledge that they can, at any moment, choose to return to Tara.

We are proud to be able to call on 93 active volunteers to assist our work in the house. Those who had to leave for personal reasons in 2013 have been replaced, so volunteer numbers remain stable.  Volunteers carry out a wide variety of tasks in responding to the needs and wishes of our residents and their loved ones, in collaboration with the paid staff.  In addition, a dozen volunteers take responsibility for the garden.  During the summer, the garden is a major resource enjoyed by all; children can play on the swings and help out with watering the kitchen-garden where our delicious vegetables grow.  Thanks to the garden we can feed our residents organic vegetables grown with love!

The year 2013 has allowed people to get to know us better, and enabled us to generate funds through various events.  Examples include the raclette sale organized by the Geneva Rotary Club in Dardagny as part of the “Open Cellars” event; the lottery organized by the Holy Trinity Church; and the Geneva Marathon.   A friend of a young resident who died at Tara organized our participation in the marathon, finding people to sponsor participants running for Tara and to cheer the runners on!  Some 60 runners, of all ages, including 30 children, participated sporting a Maison de Tara t-shirt.  We were so moved to see this resident’s three young children running with their friends in memory of their mother, and to promote funding for La Maison de Tara.

In June, we were privileged to welcome Mr Frank Ostaseski, who has taught throughout the world for over 30 years on the subject of accompanying the dying.  He held a two-day seminar on the subject, “Increasing the quality of our presence and our compassion (?)”  This was a great opportunity for us all – volunteers, staff, and trustees alike – to come together.  A total of 85 people participated in this two-day training exercise, which greatly reinforced our sense of belonging.

Two activities are a priority for the Board of trustees and the Management committee – namely advertising Tara more widely, and identifying financial resources.  We have worked very hard in these areas throughout the year with positive results particularly in respect of funding.

While our rate of occupation increased significantly in 2013, there is still some way to go before the alternative we offer is systematically and explicitly proposed to those approaching the end of their days by their doctors, social care staff, and home-care personnel.  The need for this kind of solution is evident; however it is clear that many patients or their families are unaware that the Maison de Tara exists, despite our promotional work in health and medical circles.

We remain confident that in 2014, health professionals will come to know and better understand the advantages offered by La Maison de Tara, and will recommend it more frequently to their patients on the basis of the increasing number of positive accounts from residents and their families.

Anne-Marie Struijk   

(Disponible seulement en français)

Message de la Présidente pour l’année 2012

(Only available in French)


A-M StruijkLa Maison de Tara répond à un besoin pressant de très grande actualité.  Le vieillissement de la population et l’augmentation de la fréquence des maladies évolutives se trouvent au centre de la problématique de la santé de notre pays.  L’adoption par la Confédération et les cantons de la Stratégie nationale en matière de soins palliatifs 2013-15 devrait permettre aux personnes gravement malades et mourantes de bénéficier de soins palliatifs adaptés à leurs besoins et d’une amélioration de la qualité de vie et ceci aussi bien dans le cadre hospitalier qu’à domicile. Pour répondre aux besoins de la population dans ce domaine, les ressources sont encore à développer et de nouvelles solutions à inventer. Nous sommes heureux de figurer dans le programme cantonal genevois de développement des soins palliatifs 2012-2014.

En effet, depuis octobre 2011, La Maison de Tara offre une alternative à l’hospitalisation des personnes en fin de vie quand le maintien à domicile n’est plus possible.  C’est le cas lorsque la personne vit seule ou que ses proches sont épuisés et ne peuvent plus assumer sa prise en charge à la maison.  Nous offrons  ainsi à ces personnes un encadrement et un soutien lors de l’ultime phase de leur vie, dans une résidence où règne une atmosphère familiale avec la même qualité de prise en charge qu’à la maison.  Les résidents continuent d’être suivis par leur(s) médecin(s) et les soignants des organismes d’aide à domicile.  La Maison de Tara offre aussi la possibilité de « séjours à l’essai » permettant à des personnes souffrant d’une maladie grave de se familiariser avec la Maison et d’y revenir ensuite en toute confiance pour leur fin de vie.

Une équipe de plus de 100 bénévoles engagés se trouve au cœur de nos activités de soutien. Encadrée par une directrice, cette équipe polyglotte est spécialement formée pour répondre, 365 jours par année, à l’ensemble des besoins des personnes en fin de vie et leurs proches. La formation des bénévoles fait partie intégrante de notre mission.  Dans le courant 2012, 56 personnes ont suivi nos formations en français comme en anglais et sont venues rejoindre notre équipe existante de 50 bénévoles.  Nos bénévoles témoignent du caractère transformateur de la formation et du travail à la Maison de Tara pour leur vie.  L’expérience acquise ne sert pas uniquement dans le cadre de la Maison mais est en train de pénétrer la communauté, ce qui va contribuer à permettre à une population de retrouver des aptitudes à l’accompagnement.

Cette première année d’activité fut une année passionnante et pleine de défis ! Que de changements sur douze mois. Tout était à créer et nous avons appris par la pratique.  Des modifications ont été apportées à la lumière de l’expérience.  Nous avons été surpris plus d’une fois mais des solutions inventives et des nouvelles façons de faire ont été développées par une équipe extrêmement motivée.  De nombreux talents se sont dévoilés parmi les personnes engagées dans cette belle aventure !

Les améliorations apportées à l’aménagement de la maison mais aussi du jardin ont été spectaculaires durant cette année 2012.  A l’intérieur, une remise en valeur du sous-sol a permis la création d’un espace plus convivial et pratique pour les bénévoles lors des formations.  A l’extérieur, l’aménagement d’un jardin potager a particulièrement fait la joie des jeunes enfants qui pouvaient voir pousser les légumes plantés par nos bénévoles.  Nous avons pu déguster tout au long de l’été des légumes bio d’une fraîcheur incomparable.  Nous avons aussi reçu trois magnifiques bancs en bois de chêne qui ont permis à nos résidents de faire des pauses lors de leurs petites promenades le long des sentiers aménagés.  Des chaises longues à bascule très confortables ont incité des siestes en plein air et des moments de détente et de partage pour les résidents et leurs proches.

Nous sommes vraiment encouragés par les évaluations formelles et les commentaires spontanés des résidents et de leurs proches, ainsi que par les retours des professionnels du domaine de la santé avec lesquels nous collaborons.

Nous espérons de tout cœur que la Maison de Tara pourra servir de modèle pour des projets similaires dans d’autres régions de Suisse.  Lors du dernier Congrès national de soins palliatifs qui s’est tenu à Bienne en décembre 2012, la présentation de la Maison de Tara sous forme de poster a été appréciée par de nombreux visiteurs captivés par les particularités, l’originalité et le bien-fondé de ce modèle.

Naturellement, de grands défis nous attendent dans les années à venir.

La promotion de la Maison de Tara au sein de la communauté médicale comme auprès du grand public restera une priorité pour notre équipe.  L’activité et la mission de la Maison de Tara doivent être plus largement connues, reconnues, comprises et soutenues.  La meilleure promotion demeurera le témoignage des résidents et de leurs proches ! C’est donc tout ce travail d’accompagnement qui permettra une vraie compréhension de la valeur de notre mission auprès de la population.

Pour la Maison de Tara, la recherche de fonds sera toujours incontournable ! Malgré les économies substantielles résultant du travail des bénévoles pour l’accompagnement des résidents et de leurs proches ainsi que pour les tâches domestiques, l’engagement d’un certain nombre de professionnels sera toujours indispensable pour garantir la qualité de la prise en charge des résidents en fin de vie.  Le salaire de ces professionnels engendre naturellement des coûts de fonctionnement importants.  Les fonds récoltés par le biais des « Amis de la Maison de Tara » nous permettent de garder un prix de pension accessible à la majorité des résidents.  Pour les plus démunis, notre fonds de solidarité ainsi que notre collaboration avec des fondations caritatives, nous permet d’accueillir des résidents indépendamment de leur situation financière.

Notre but est aussi d’améliorer constamment notre formation qui répond très spécifiquement aux besoins de la Maison de Tara. Chaque année, un minimum de 2 volées de formation devra être mis en place pour permettre un renouvellement constant de nos bénévoles.  Le taux de renouvellement est d’un tiers par année, ce qui est dans la norme pour ce genre de bénévolat. Nous sommes encore dans une phase de recrutement de bénévoles nécessaires au  bon fonctionnement de la maison.  En effet, nous désirons créer un pool de bénévoles pouvant venir en renfort des veilleuses la nuit, lors de situations particulièrement intenses.  

En tout état de cause, cette première année de fonctionnement a été très encourageante à plusieurs titres : des rencontres magnifiques avec les résidents et leurs proches, des collaborations très fructueuses avec les professionnels du domaine de la santé en charge de nos résidents, des bénévoles très motivés et pleins de ressources, des dons très substantiels pour nous permettre de boucler notre budget et surtout le sentiment d’avoir répondu en large part aux attentes des résidents et de leurs proches.

Anne-Marie Struijk

About us

La Maison de Tara was founded in Geneva in 2007 as a public utility charity in the lineage of the Hospice Movement. Its goal is to provide patients and their family, with care and support during the last days of life.

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La Maison de Tara
79, chemin de la Montagne
1224 Chêne-Bougeries

Tél : +41 (0)22 3488666
Fax : +41 (0)22 3488664
Info@lamaisondetara.ch