Children and volunteers enjoying some of the activities at Barretstown 
Spring Legacy Supplement
Making a difference with a lasting gift
Increasing numbers of people are using their will to leave a legacy that will live long after them writes Aron Hegarty
The current coronavirus crisis has focused attention on the important rituals that surround death and dying in Ireland. As a people, we have often prided ourselves on the fact that we do death well. Restrictions around wakes and funerals – while necessary – have caused great pain and focused attention on the importance of remembering and honouring those who have gone before us.
Few people want to think about death, let alone their own. And yet, providing for what happens around one’s funeral and the arrangements for a will are necessary and important parts of life.
Increasingly, while ensuring that loved ones are looked after – many people are choosing to support a charity that they have cherished during their lives. Still other people reflecting in the twilight of life want to give something back to those who are most in need.
This is where a charitable legacy comes in and many good causes rely on such generosity to continue their vital work.
The Irish Hospice Foundation is one such organisation that continues to play a profound role in the life of those living with a terminal illness and their families.
The IHF was set up in 1986 to fund and develop hospice services and provide support relating to dying, death and bereavement.
Its mission is to “strive for the best care” and “achieve dignity, comfort and choice” for people facing end of life and “promote discussion” of issues related to care at the end.
Sharon Foley is Chief Executive of the foundation and says the organisation journeys with people to decide together how best to address their needs and concerns.
“A lot of our work focuses on ensuring people have the best end of life and bereavement care,” she told The Irish Catholic.
“Our healthcare programmes are very active in acute hospitals, we have a very large hospice foundation which works with all the hospitals in Ireland to deliver better care at end of life.
“About half of the population will die in acute hospitals, so it is very important that we improve care there,” she insists.
According to Sharon, the IHF has “a strong programme that works with 160 nursing homes across Ireland to improve end of life care”. The organisation also funds nursing for non-cancer patients and works with the Irish Cancer Society to provide nursing care to the tune of around €800,000 a year.
“If you ask people what they want at end of life,” she explains, “three-quarters (75%) of them would like to stay at home; to be nursed and cared for at home.
“One very important piece of work we do is our ‘Nurses for Nightcare’ service, which allows people to stay at home at their end of life.
“This service really gives them that opportunity, and offers supports to families at end of life by providing nursing care through the night,” she says.
Such assistance is vital to families who may have taken on the role of full-time carers to give them the opportunity to get some rest at night knowing that their loved one is in safe hands.
Even when family and friends have come to terms with the fact that a loved one is terminally ill, death still comes as a shock. This is where the foundation concentrates time and energy around helping people who are going through loss.
Sharon says the organisation offers “a range of specialist bereavement services where we train people right up to master’s level and we do a lot of information around bereavement all over the country.
“At a broader level,” she continues, “we try to communicate with Government officials about improvements in end of life care and bereavement support that need to happen.
“A lot of our work is in advocacy and improving policy, and we also seek to engage with the public around conversations on dying as it can be hard to talk about death and bereavement,” she says.
Sharon cites just one example of this as the ‘Think Ahead’ form which the foundation has pioneered. It is aimed at helping people think about what kind of end of life care they would like and facilitate sometimes difficult conversations with family and friends.
“We have a big public engagement programme which works with people and provides a ‘Think Ahead’ form that allows you to plan ahead for end of life, to think about things that are important to you and your family,” she says.
End of life care is often not something that people want to think about, but with the steady hand of the Irish Hospice Foundation it is a conversation that one can embark on with confidence and trust in experienced hands.
Another charity benefitting from legacies is Barretstown where children living with serious illness have a chance simply to be children. Many of the users of the service spend a lot of time in hospital and dealing with very complex issues at a young age. Barretstown – the vision of famous US actor Paul Newman – gives them the space just to have fun.
Based in Co. Kildare, it is a 500-acre site where residential camps and programmes are run for children and their families affected by cancer and serious illness.
Barretstown offers a range of adventurous, fun and challenging activities which are supported behind the scenes by 24 hour on-site medical and nursing care.
Everything involved, including transport, accommodation, food and medical assistance are provided at no cost to the families.
The Barretstown mission is to help rebuild the lives of children affected by serious illness and their families through a “life-changing” therapeutic recreation programme in a “safe, fun and supportive environment”.
Dee Ahearn is CEO and insists that while the children and their families come to have serious fun, there is another side to it.
“Our therapeutic programmes are designed to rebuild confidence and self-esteem in these children,” she says.
“They leave here with their heads held high, believing that they can do anything and are not defined by their illness and that’s what Barretstown is all about.”
Paul Newman founded Barretstown in 1994 and, according to Dee, he was inspired to do so “because he felt that luck had played a huge role in his life, and that children who had to endure serious illness weren’t so lucky.
“During our first year there were 124 campers. Now we are serving more than 9,500 campers on an annual basis,” she says.
“Last year we celebrated our 25th anniversary and the milestone of having served 50,000 campers since Paul set it up,” Dee adds with modest pride.
Like the IHF, Barretstown would be lost without the generous support of the general public and fundraising is a constant job of work. With many people seeing their income shrink due to Covid-19, both are concerned that a reduction in donations and cancelled fundraising events will affect vital services.
Sharon says that the hospice foundation’s “fundraising has been massively damaged”.
“All our community events are gone, so there has been a huge impact on our income,” she says. At the same time, “never before have our services been so in demand”.
“We have developed a new care and information resource which provides supports, tips and ideas for people grieving in these exceptional times.
“One of the most recent tools we’ve developed is caring for somebody who is dying at home. We provide a resource for those people, and all that information is available on the ‘Care and Inform’ section of our website (hospicefoundation.ie),” according to Sharon.
The IHF is also conscious of the current changes to practices around death and is reacting in a proactive fashion. Sharon says that “we also have specialist information for people organising funerals and a range of information for healthcare professionals working in hospitals, nursing homes and for families visiting their loved ones.”
Barretstown is also feeling the pinch with a loss of donations as well as having to curtail services due to restrictions on bringing people together. Dee says that “our outreach and residential programmes aren’t able to continue.
“So we’ve had to close our gates at Barretstown,” she adds with sadness.
But, the charity is responding creatively and making the best of a challenging situation. “The children we serve are very vulnerable and are feeling the effects of isolation now more than ever, so we established ‘Barretstown Live’, which is an online platform.
“We built a studio here in Barretstown and every Saturday from 10am to 4pm, the families who were due to come to Barretstown that weekend get a private invite and link so they can engage with us here.
“We send out kits that include everything,” Dee explains, “which are delivered to the families on the Friday so that the kids can participate.
“On Tuesdays, Wednesdays and Thursdays we broadcast live on Facebook, so that children who were with us at the weekend can tune in and have lots of fun with our team, many of whom have stayed on-site during the lockdown and we are very fortunate for that,” she adds.
While acutely feeling the pain that the children can’t be physically present, the volunteers are doing their best to give them the full experience. “The children get so excited,” Dee says, “and they love seeing the Barretstown car pull up outside their house and the kits being delivered: the feedback we have had from families has been phenomenal.
“The parents have said it’s been a lifeline to them because they are so isolated right now and want to do so much with their children,” she says.
The idea of leaving a legacy to a charity as well as providing for family and friends is something which has gained in popularity in Ireland in recent years. When a legacy comes in, it can often add significantly to the projected income for that year allowing the organisation to embark on new projects.
“They are an immensely valuable part of a charity’s work,” Sharon says of legacies, adding that “they are amazing gifts which allow charities to really look to their vision.
“What you find with a legacy is that it is a very substantial amount of money and whenever we get a legacy, we sit down and we think ‘how can we best use this legacy to really make a difference?’
“Legacies allow big change to happen,” she continues, “when you get a legacy of a significant amount, for example, it may allow you to start a new programme,” she says.
One such example of this is the roll-out of IHF programmes in care homes. Sharon recalls how “a few years ago, we received a significant legacy which allowed us to start all of our work in nursing homes.
“In that context, legacies are tremendously important because they allow the charities to really stop and think about priorities, and what can be done which would really push change,” she says.
Sharon says that she is humbled by the support that the organisation receives. “A lot of readers of The Irish Catholic help fund us, and I want to say a huge ‘thank you’ for supporting us”.
There are several types of legacies available to any person wishing to assign or leave a legacy in their will. The first is a fixed-sum legacy (or pecuniary legacy), which is a pre-specified monetary amount.
Another option is a residual legacy, where the amount left in an estate is assigned after all debts and expenses have been paid.
The specific legacy constitutes any non-monetary gift such as stocks, shares or physical items like property, land and so on.
Lastly there is a testament trust created in the will to safeguard and distribute some or all of the estate for the named beneficiaries, which only comes into effect after a person’s death.
At Barretstown, legacies also help take the pressure off so that the staff and volunteers can concentrate on their core mission: lifting the spirits of children and young people who are going through so much.
“Legacies are very important to us as they allow us to create more magic for the children and their families who come to Barretstown,” according to Dee.
“Every year we have to raise almost €7 million to run our programmes. We get 2% of our funding from the HSE, but everything else we have to raise ourselves.
“The funds that we raise go into the day-to-day running of our programmes and are used to ensure that we can continue them,” she says.
Such bequests have allowed Barretstown to expand considerably. “Thanks to legacies, we have done so much over the years to improve our facilities and create new activities for the children and their families that we simply couldn’t do otherwise.
“For example,” she explains, “we have been able to build a new dining hall which is 50% greater than the capacity of our old hall because our numbers are growing year on year.
“We were able to upgrade our cottages, thanks to a legacy, and we were able to build a new accommodation block for our 2,500 yearly volunteers, thanks to a legacy.
“We have created a Hill of Remembrance here, where we remember those who have helped us and we put lights on it to recognise those wonderful people who left legacies to Barretstown.
“We make such a difference to the children and families that we serve, and if people would consider leaving a legacy towards Barretstown, we would be hugely grateful.
“Any legacy is hugely welcomed,” she says, “and it doesn’t matter how big or small that legacy is, we will really appreciate it.”
A legacy really is a way to make a difference and leave a gift that endures.
