I am a

Carer

Your PHH Team

Family and close friends often provide care and support when a family member is very ill and near the end of life. It can be very tiring – physically and emotionally. So it is important to look after yourself and get any support you need. Help is available for carers – including family members providing care.

PHH provides all of our families with individualised support according to their needs. Our team aims to support your caring role by providing information and exploring options which help you cope daily and give hope.

We recognise that often there are many demands on your time, including medical appointments, treatments in hospital, financial responsibilities, family needs, and life in general. Our aim is to help you maintain your chosen commitments, with as much or as little support as you feel you need.

Our team of palliative care specialists are experienced in providing support, answering questions and offering holistic care in your home.

Your Palliative Care Team include:

  • Specialist Palliative Care Nurses
  • Community Nursing
  • Specialist Palliative Care Physicians
  • Counsellor-Caseworkers
  • Spiritual Care Counsellor
  • Art Therapist
  • Music Therapist
  • Trained Palliative Client Care Volunteers
  • Client Resource Advocate

Nursing

The PHH nursing team is made up of specialist palliative care nurses who have extensive experience and knowledge of palliative care issues, particularly that of symptom management. The specialist nurses work collaboratively with general health care services to provide effective and timely symptom management for your loved one and can provide education for you in your caring role.

A 24 hour on call nursing service is available, ensuring you always have someone to guide and support you during this time.

As a member of the broader care team, the PHH nurses prioritise communicating clearly with you as family, your GP and specialists, and other service providers to ensure that our care is co-ordinated and we understand the needs and expectations you have.

When the person you are caring for is referred to PHH one of the nursing team members will attend your home for an initial assessment. At this time they will explain more about our service and answer any questions you may have.

Intake

The PHH Intake Team aims to make the referral process as clear and as simple as possible for you and your family. Referrals to PHH can be received from a variety of people including your GP, Specialists, your hospital or even you, as a family member.

At the time of receiving the referral for your loved one, we will liaise with the person who has alerted us to your needs (referral source) and ensure that we have adequate information to understand your current care needs.

Once we have this information our specialist palliative care nurse, in the intake team, will phone you or the person you are caring for. The intake nurse will be introducing our service and discussing the current difficulties you may be experiencing. At this point we will be organising a time for one of our specialist nurses to visit to complete the initial assessment, opening up access to the full palliative care team and services.

During this phone call the intake nurse will need to ask some questions as part of a compulsory risk assessment for visiting people in their homes. Don’t be alarmed, these questions just helps us to keep our staff safe as well as ensuring we have adequate information to make safe decisions regarding your care.

“Caregiving is a series of small acts of care that alter the course of someone's life. ”

Dame Cecily Saunders

Founder of the hospice movement

Our Services & Support

Family often provide care and support when a family member is very ill and near the end of life. It can be very tiring – physically and emotionally. So it is important to look after yourself and get any support you need. Help is available for carers – including family members providing care.

Counsellor-Caseworker

All carers and their families are introduced to a Palliative Care Counsellor-Caseworker who is available to them while receiving PHH supports.

The counsellor-caseworker provides support to anyone who is providing care to a PHH client, including family, friends and any other supportive, significant relationships.

Agreeing to care for someone often requires a readjustment of your normal daily activity and commitments - practical and emotional support may be provided through the counsellor-caseworker to help you with these changes.

Your palliative care counsellor-caseworker works together with your nurses to ensure that we provide holistic care in your home (holistic care is treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease). They offer practical supports by providing information and options, coordinating referrals and connections to local community agencies (hopefully minimising the demands on your time and energy).

The palliative care counsellor-caseworker may also provide emotional support directly through counselling conversations, or through referral to our team members that include:

Spiritual Support Counsellor
Art Therapist
Music Therapist

These can be provided in your home or in our confidential counselling space at PHH offices. They are applicable to all age groups (including children) and interpreter services are available when English is not your first language (or when your family member may benefit from an interpreter). Your palliative care counsellor-caseworker may also help to facilitate family meetings to help share and strength the family's coping in difficult times.

Practical Support

The Client Resources Advocate organises referrals for practical services and assists with funding and advocacy when needed.

Your team works with the Client Resource Advocate to link you into the following:

Financial Concerns

  • Support with applications for Centrelink benefits
  • Early superannuation payments
  • Welfare financial assistance
  • Access to expert financial advice

Respite options

  • Aged Care Assessments to help with government subsidised respite
  • In-home respite options including nursing and personal carers
  • Nursing home respite options on the Peninsula

PHH Volunteer Assistance Program

"In-Home" Services

  • Council services including regular cleaning services, personal carers and shopping assistance
  • Community Support Packages
  • Nanny rebates through Centrelink
  • Taxi Directorate applications
  • Personal Alarms
  • Delivery of prepared meals

Planning ahead

  • Nominating Power of Attorneys
  • Advanced Care Planning
  • Writing a Will and funeral planning

Emotional Support

We have trained professionals who can help you to explore and share:

  • how to best communicate with family members, including children and adolescents
  • supporting yourself and your loved ones
  • how to cope?
  • when you just need to talk....
  • explore and share the importance of relationships with family, friends, pets and community
  • fears and anxieties about your future
  • the changes you have experienced to your life
  • special plans you would like to make or experience
  • feelings and experiences around death and dying
  • planning and hopes for the future

PHH provides palliative care counselling, spiritual counselling, Art Therapy, Music Therapy, Sand Tray Therapy for you and your family. These services can be provided in your home or in our confidential counselling space at PHH offices.

 

Spiritual Support

A spiritual care worker is available to visit you and your family at home, to support and encourage your spiritual nourishment.

Spiritual care is focused on listening and allowing each person to explore and express their hopes and concerns, while drawing on their own spiritual and emotional resources.

Spiritual support is open to all faith traditions, beliefs and spiritual searching.

Things you may wish to explore with a spiritual care worker:

  • questions or curiosity about faith and belief
  • mindfulness
  • prayer, meditation, stillness, connection to your own deep heart
  • rituals, sacraments
  • questions about life, death, and after death
  • creating healing spaces and practices
  • inspirational literature, scripture, sacred music/song
  • dreams, visions and peak spiritual experiences
  • loss and grief.

Family Meetings

Family Meetings can often help to clarify practical concerns, individual understandings of symptoms and illness, and help to strengthen family relationships and cohesiveness.

Your palliative counsellor-caseworker can facilitate the following meetings at your request:

  • Coordinate and facilitate meetings with all community services involved in the client's care to prevent gaps or confusion, and minimise pressure on family carers
  • Meetings with family members when decisions need to be made that impact your caring role
  • Facilitated family members where members are given the opportunity to share their personal experiences, concerns and emotions and to listen to others in the family. The aim is to increase understanding and support between family members (children may also be included)
  • Story telling - facilitation of a meeting to help a family member share an important story, memory, event, or connection with other family members

Carer's Education Program

As a carer, family member or friend of a client accessing PHH services, you are invited to attend our Carer's Education Program. This program is only for carers and family members and provides an opportunity to meet others dealing with similar situations and experiences.

Guest speakers each course include a Palliative Care Medical Specialist, an Occupational Therapist, a Senior RDNS Palliative Care Nurse, and PHH's Client Resource Advocate. We make a concerted effort to ensure that the course responds to the needs and questions of the participants (and this may be a little different each time).

Topics covered include:

  • What is palliative care?
  • What does it mean to be a carer?
  • Support services available to carers
  • Royal District Nursing
  • Common symptoms
  • How to prepare for the future
  • What options do I have?
  • How to look after yourself

This program, held in Frankston and Mornington, runs over three consecutive Fridays and is led by a counsellor-caseworker and nurse who are both experienced in palliative care. Please phone PHH for information about dates and any other queries.

"I was a bit hesitant at first but I found the sessions really helpful. I'm glad I went along."

"I have definitely benefited from the three programs. Being a caring wife and carer is not an easy job."

"Very helpful in what to expect as a carer for a terminally ill relative. Also to be made aware of services that can be accessed."

"This will assist me greatly during the coming future."

Art Therapy

Art Therapy provides a neutral starting point to explore life changes using visual art forms. It can be used as an alternative to talking for when words fail, to support your experience and as a concrete way to form, develop and access strengths.


Our Art Therapist is available to visit you and your family at home for your expressive therapy needs and art interests. Art therapy can assist with:
• physical symptoms such as pain, sleeplessness, loss of appetite and physical losses;
• life issues including change, burden, loss, anxiety, stress, conflict, grief
• accessing your own style of ‘art’, enhancing life through developing creatively.
• helping you discover drawing, painting, sculpture, collage, printmaking, photography, digital art, online art book making, journaling
• starting or finishing a project such as making a legacy gift for someone or to simply enjoy the process of learning about and making art for yourself.

Visits can be arranged for individuals, couples or families and is also available throughout the year for PHH clients. Art therapy is also available during bereavement.

For further information visit: www.anzata.org

Music Therapy

Music is personal and powerful, and adds to your quality of life in a creative way. Music is something that can help you to relate to the conditions in your life at this time. It touches the mind, body and spirit.

Using music can:
• Provide enjoyment
• Improve coping through music based supports
• Address sleep disturbances and increase your quality of sleep
• Soothe you in just the right ways

A Music Therapist is available to offer a range of things depending on the situation:
• Sharing music with family and friends
• Using music to explore feelings or emotions that are not easily expressed in words
• Using guided music relaxation - where you are actually doing something by doing nothing
• Choosing appropriate music for different situations
• Providing bereavement support incorporating music

Music Therapy is for all ages and abilities - you DO NOT need a background in music to enjoy music therapy. Sometimes the best way to know if it may be helpful is to talk with the Music Therapist who can explain things more.

For further information visit: www.austmta.org.au

Sand Tray Therapy

Sand Tray Therapy allows a person to construct his or her own picture using miniature toys and colored sand. The scene created acts as a reflection of the person's own life and allows the person the opportunity to resolve conflicts, remove obstacles, and gain further insight into themselves and their relationships.

It is suitable for children, teens, adults, couples and families.

When is Sand Tray Therapy useful?

  • Managing a chronic or life limiting illness
  • Dealing with loss and grief
  • Unexplained fears and anxieties
  • Depression
  • Relationship and family issues
  • Coping with bereavement
  • Decision making

I don't know how it works, but I could just see my life differently when I placed all those things in the tray and then moved them around till it "felt right"

Client Care Volunteers

Client Care Volunteers are men and women of all ages and backgrounds who have great respect for people with all their differences, and life with all its difficulties.

Client Care Volunteers have been fundamental to the services provided by Peninsula Home Hospice since the organisation began. But PHH aims to support the carer who is looking after the ill person too, and Volunteers are an important part of the specialist palliative care team as we all work together to support you in supporting your loved one.

Volunteers allow a carer to attend to other matters outside the home or have some timeout to recharge their energy, without worrying about their loved one being alone. Volunteers assist clients and carers according to their needs. Some clients and their families may choose to meet a Volunteer early in their relationship with PHH. For others, it may come later, perhaps when things are a little more difficult. The simple step of inviting a Volunteer into your lives could make all the difference.

Volunteers commit to a block of up to four hours per week to support clients and carers, knowing that the ordinary things they do (such as having a chat, a cuppa, listening, giving their time) can make a great deal of difference.

Volunteers also support PHH programs such as Carer Support Groups and transport to Studio Art Therapy. They also provide support to staff and clients in Peninsula Health’s Palliative Care Unit.

Tips to help Care Givers

  • What restores you and increases your energy? Take the time to do this regularly
  • Admit you may need a break at some stage and have a plan in place
  • Keep a diary with appointments, information and notes to yourself - it helps to keep it all in one place
  • Keep a symptom diary, rather than trying to remember details that doctors/nurses may ask from you
  • Take regular walks and exercise
  • Seek support early on from your PHH team (this may help you cope with changes and the bumps along the road)
  • Accept offers of help from family and friends (allow them to care for you too)
  • Talk to someone who can listen well, and provide support
  • Engage in 'feel good' activities, remembering that when you are feeling good, your care of the client is also positive
  • A rostering system may help balance family commitments and help other family members feel useful
  • See your GP for check ups, and prioritise your health needs as well
  • Use our PHH Client Care Volunteer service to help you attend any regular community or social commitments during this time (your mental health is very important)
  • Talk to any member of our team - we welcome questions, feedback and requests.

About Grief

Grief is a natural response when facing a life limiting illness and the death of someone you love. Each person experiences grief in their own way. It can change from day to day and over time. There is no right or wrong way. Grief seems a simple word to describe the many complex responses we may experience following the death of someone close.

  • It is normal, natural and inevitable
  • It can affect every part of our life, including our thoughts, behaviours, beliefs, feelings, physical health, sense of self, identity and our relationships with others
  • It can also be a time of reflection, change and personal growth.

"Life has been like a roller coaster ride - coping well one day and the next being blind-sided by unexpected emotions"

"Early on, the pain, feeling of loss, blaming yourself, was very strong....."

"Despair, sadness, anger, disbelief, loneliness, realisations, acceptance, laughter - life goes on but never the same."

Counselling and Therapy:

  • Takes place in a safe and confidential space
  • May be for a child, sibling, parent, grandparent, relative, friend, work colleague
  • Acknowledges that everyone's grief is unique, and has an individual timeline
  • Is an opportunity to explore, express, manage and understand intense feelings and thoughts
  • May help with feeling "normal" and less isolated
  • May be about exploring questions of faith, beliefs, dreams, visions

"The talking really helped; I could open up without burdening my family and friends".

Supporting children experiencing change and grief

Kids can cope.

When kids are in a family affected by cancer, it can be tough on them and you may wonder how they will get through it. But there is evidence that, with good support, children can cope.

Research shows that a key factor in helping kids get through difficult times is a close relationship with an adult who values and supports them, and accepts them for who they are. The adult can be a parent, a grandparent, a favourite aunt or uncle or a family friend. Whatever the connection, an adult who provides support can help a child through tough times.

Children need a chance to talk.

Talking to your children about cancer gives them the chance to tell you how they feel and lets them know it is okay to ask questions. Sometimes kids will open up to adults who are not their parents. They may feel guilty about burdening a sick parent or taking up a healthy parent's time, so they will confide in someone else like a teacher or step-parent.

As a parent, it is important to encourage your kids to talk about their thoughts and feelings with you or someone else who is trustworthy.

This is not only true for cancer, but all life limiting illnesses.

It is important that children are given an opportunity to talk with their close family in the familiar, safe space of their home - and to help you do this PHH has a small library of children's books available to you that help explain difficult concepts, identify and validate normal emotions and fears.

These picture books are simple and provide an opportunity for the children to ask questions or make comments which will help you share and understand your experience. These books are available to you through your Counsellor-Caseworker and/or local public library.

Bereavement

As an extension of the support available to you and your family, PHH provides bereavement support for up to 18 months.

This includes:

  • Individual counselling
  • Family counselling
  • Art Therapy
  • Music Therapy
  • Spiritual Care counselling
  • Sand Tray Therapy
  • Ceremony of Remembrance
  • Sunrise Group
  • Tree Planting Legacy

These are provided by specialist staff and available at no cost to those who received care from PHH. After this time, if further support is needed, we help to link you into relevant community services.

Ceremony of Remembrance

PHH offers a Ceremony of Remembrance each year and invites families and friends who have received our support to attend. This Service is a time of gathering together to remember and celebrate the lives of those who have died.

The Service includes music, poetry, prayer, a tree ritual and a candle lighting reflection. You are invited to bring a photograph or object representing the person you are remembering to be displayed for the duration of the Service.

Sunrise Group

This is a monthly social group for people aged 50 plus whose partners have died in the last 18 months. The group meets at a different venue each month.

Group members pay for their own lunch and then share an activity in the community, providing an opportunity to:

  • meet with others who have also lost their life partners
  • make new friends over lunch
  • share ideas and support each other
  • be introduced to new places and interests in the community.

Tree Planting Legacy

PHH, in partnership with The Briars, host a tree planting legacy around May every year. All families who are receiving PHH support are invited to plant a tree as a living memory to remember someone who has died.

The trees planted will provide habitat for fauna within the sanctuary. The site is commemorated with permanent signage and this area is accessible for the public to revisit during opening hours of The Briars.