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September 25, 2011

Supporting the Family on the Final Journey

by Val Reynolds
Fleur de Lys © Pintail Media

Fleur de Lys © Pintail Media

A family’s journey through life-limiting illness is very different from that of the patient’s. Isabel Hospice cares for the patient and all those around them. When someone in the family has a diagnosis of a serious illness, everybody is affected. It takes time to adjust and find ways of managing illness and treatment

Isabel Hospice cares for the patient and all those around them. The Family Support Team consists of staff specially trained in counselling and family work and a team of highly skilled and trained volunteers. These teams work closely with the nursing staff and Hospice Chaplain. They know that patients and families need not only physical support but also emotional, practical and spiritual care too.

Jeff’s wife, Cathy lost her fight against breast cancer four years ago. She was just 33 years old. About five months after she was diagnosed, Cathy’s consultant suggested they contact Isabel Hospice. Their initial reaction was typical of many patients and families who have not experienced hospice care before; that the Hospice is a place where people go to die and “she was not going to die yet.” Cathy was struggling at the time with the chemotherapy treatment she was undergoing and so they decided to make use of the care being offered by Isabel Hospice for just a short period. This was the beginning of a relationship between Jeff and the Hospice that still remains today. “They were superb and the care was fantastic. They looked after me as well as Cathy. Cathy would go in for a week or so and they would get everything under control with her medication, etc until she was ready to come home.”

“It would give me a break too. You don’t realise how things build up and up. You think you should be able to cope and you don’t realise things are getting on top of you or how the stress is building. The times when Cathy stayed in the Hospice would let me recover too. I could go and stay with her there whenever I wanted to, knowing that they were handling everything. When she came home I was stronger and in a better position to care for her myself.”

“I was there for her if she wanted to shout or as a shoulder to cry on but I couldn’t really help her. I would think I was coping and then something, usually something small, would just snap and I would find myself snapping back at her and saying things I really didn’t mean. There was one time when a bike show was on in London and Cathy wanted me to go. She was very poorly at home and I didn’t want to leave her. Helen our Hospice Nurse Specialist came and stayed with her and they both convinced me to go and even supplied me with a mobile phone so that I could keep in touch. I worried all afternoon but the break was wonderful and allowed me to feel so much better when I returned.”

“On those occasions when Cathy went into the In- patient hospice I felt a bit of a failure, I was her husband and I should be able to look after her I thought, but she was suffering with terrible pain and a week later she would come back home and it would be all under control again. I couldn’t do that for her, but it made it so that we could cope again for a period together as husband and wife.”

At Isabel Hospice everyone works together with families and carers, allowing them to dip in and out of the facilities, care and support on offer to them as it best suits their current needs. The Family Support Team is there throughout the illness and into bereavement and also specialises in support for the children and young people involved. Although a family’s journey through the illness of one of them is very different from that of the patient’s, their need for support, information and for feeling valued and respected are the same.

The Isabel Hospice team are specialists. They know how to approach families, how to assess and understand their needs. They have many years of experience about interventions that help and can offer holistic care that will ease the practical, physical, emotional, social and spiritual pain and suffering of the people who will go on living after a death in their family.

Isabel Hospice staff stand beside the family, ready to help when needed. This may be soon after bereavement or it may be years later. The support does not go away. Following bereavement Isabel Hospice support people in many ways such as giving information about the effects of grief and help to sort out finances and other practical worries. One to one or group support is on offer for adults and separately for children and young people.

Where children and young people are involved the Hospice has programmes which offer a group experience for grieving children and their parents. On these programmes children and young people share with others of the same age some of their worries and painful feelings. They are encouraged to express their emotions by using music, art, talking, physical activities and they also have some fun together. Parents are encouraged to accompany their children and meet together while their children are in the group. They take part in similar activities and this provides the basis for the children and adults to have a shared experience.

For adults Isabel Hospice offers one-to-one sessions. There is a team of trained visitors who can either meet with people at home or arrange to meet at one of Isabel Hospice’s bases. The service is confidential and concerned with helping people to cope with their feelings of loss. There are also different groups all over the area that meet to share feelings, experiences and friendship.

Many ill and bereaved people question why and what is the meaning of the illness. The Hospice Chaplain is available to support families whether they have particular religious and spiritual beliefs or none at all. “90% of our patient intake have no religious beliefs and do not attend a worship centre. Yet I have never met a patient without some form of spirituality. By listening and getting to know the patient, we, on the caring team, learn each patient’s spiritual language and so discover their spiritual needs. If a patient is in some kind of spiritual pain we work with them for control or release from the pain.” Geoffrey Brown (Chaplain)

“Some people feel bereavement is like an injury which you will recover from. It is of course not like that at all.

I found the staff at Isabel Hospice were prepared to let me talk to them about Cathy when I wanted to. Friends were very kind but there came a point where I felt guilty repeating myself over and over to them. The Hospice were and are always there and ready to listen when I needed or indeed need to talk.” Jeff.

More information about Isabel Hospice and the services offered free to the local community in eastern Hertfordshire can be found on the website: www.isabelhospice.org.uk or by calling 01707 382500. It is an independent hospice funded mainly by charitable donations. The majority of the £3+ million running costs are generously raised by and through the local community to allow this service to continue to be provided free to local people.

Isabel Hospice care is based on the simple idea that our patients are ordinary people living with physical, social, emotional and spiritual needs. We are an independent Hospice funded mainly by charitable donations. We have developed our services to meet the needs of our local community in eastern Hertfordshire and rely on the help of a multitude of specially trained voluntary staff, highly trained nursing staff and specialist doctors to make the lives of patients and their families as good as they can possibly be.

The Hospice provides its services for free to local people. Around £2 million of the £3+ million it costs to run the service each year needs to be raised through charitable donations.

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