23 May, 2021
Interview with Jeanne Warmington, Harbour Hospice Family Support Team Leader, and Roanne Stout, Harbour Hospice Social Worker
Having a loved one with a life-limiting illness can be as big an emotional roller coaster for the family as it is for the patient, would that be fair to say?
Roanne: Yes. We are here for the patient, but we are also here for their family. Sometimes we become involved soon after their loved one’s diagnosis. Sometimes the family will have been on quite a lengthy journey in the health system before the oncologist or GP might refer them to hospice. It depends on what needs have been identified by their clinical team. Sometimes a situation can change suddenly and lots of decisions need to be made. We might be brought in at that point.
How many families of patients would you support each year?
Jeanne: In about 60 percent of patient cases, we support their family.
In what ways do you offer support?
Roanne: Our role is really about forecasting and giving families information so they know what assistance is available to them and where they can go to get it. We help them navigate decisions and get an understanding of the health system. What’s important is that the family is empowered to make their own decisions.
Jeanne: We’d always be involved when there are young children in the family because we know the family is going to need extra support as they are managing so many different aspects of care. They need to keep caring for their children, themselves and the person who is ill.
Roanne: Parents might need support around how to open conversations with their children about what is happening. Preparing your children and saying goodbye to them is incredibly tough.
Do families find that caring for an ill loved one is a bigger undertaking than they’d imagined?
Jeanne: I don’t think anyone’s ever prepared for it. They might have made a pledge to their loved one that they would look after them but caring for somebody over a long period of time can be really onerous and exhausting and you don’t really realise the gravity of it until you’re in it. So sometimes it’s about talking to a carer about how they can talk with their loved one about what they can manage and what they can’t, and then looking at what alternatives can be offered
Do carers sometimes feel conflicted?
Roanne: Yes. They can feel grief around no longer being able to work or, equally, grief and guilt because they can’t afford to not keep working. For those who give up their jobs or reduce their hours, there can be grief around social connections to the world becoming smaller. There’s grief around loss of intimacy with a partner or no longer being able to do the things they once enjoyed together.
People’s lives are complex, and on top of a loved one’s diagnosis they might be dealing with other challenges – financial hardship through no longer being able to work or their loved one no longer being able to work. There are also families who are dealing with safety issues, not feeling safe in their home.
Can you do anything to help in those situations?
Jeanne: We can help people to connect with legal advice and we can put them in touch with agencies who will help with the big issues of income, housing and wellbeing. We have hardship funding (through a grant from a trust) that we use to provide financial assistance to families who would struggle to pay a bill for an ambulance trip, for example - and we can help with vouchers.
What about support groups?
Jeanne: We run support groups for carers, yes. The groups receive practical advice on topics like nutrition and physiotherapy for their loved one. But it’s as much about connecting with others who are in the same boat as them, so they know they’re not alone.
Do you have a favourite anecdote of a time when you made a difference?
Jeanne: We had a couple who had a favourite restaurant they’d always gone to, where they’d always ordered the same meals and wine. The patient wasn’t well enough to go any more so we contacted Race For Life, which helps people with life-limiting illnesses fulfill dreams, and they arranged for the restaurant to bring the dinner and wine to the couple’s home. It was a very special time.