Palliative care is care that is aimed at improving the quality of life of someone who is facing a life threatening illness.
If you are a palliative caregiver you might feel overwhelmed by the emotions and responsibilities that often accompany this stage of end of life care. Remember that you do have help.
Role of palliative care team
Often, palliative care and family support will be provided in the home by a number of people: a palliative care team, including community nurses, therapists and personal support workers.
The palliative care team also supports you, the caregiver.
By supporting the person in need of palliative care, the palliative care team also supports you, the caregiver, by taking on tasks that you would normally deal with yourself, so that you can focus on more important matters at this difficult time.
Community nurses-These nurses will provide care to manage the pain and symptoms of the person you’re caring for. Nurses can be a listening ear and help to answer any questions you have as well. They can also link you to community resources and services or help you understand what is happening to the person in your care and what to expect as things change.
Personal support workers – Support workers provide personal care, assist with household tasks, and provide company for your loved one when you can’t be there; for instance, if you have any appointment. Nurses and PSWs are there to support you. They can reassure you that you are providing end of life care correctly.
Physiotherapy and occupational therapists – These health care professionals can also help you to figure out what equipment may be needed in your home.
Doctor (for in-home visits) - Sometimes as health conditions and illnesses change, patients are unable to get to the doctor’s office. Having a doctor who is willing to visit the person you’re taking care of in their home is important. Ask your primary doctor if they are willing to do home visits. If not, the community nurse will work with you and the person in your care, to find a doctor who will do a home visit as needed.
Volunteer organizations - There are also wonderful volunteer organizations in many communities across Canada that provide support and services to patients (and their families) at the end of life. In some communities, friendly visitors will come and visit the home to sit and talk to the patient. They may also just sit while he or she is resting so you can run errands or do personal activities. You can start by calling your local hospice or health center to learn more about what volunteer help is available to you in your community.
Family and friends – These people are another potential support group for you and the person in your care. While some may be willing to help with hands-on care, others may be available for driving to doctor appointments. There are other simple things like running errands or visiting that they can help with.
Other palliative care tips
Other things to consider if you are a palliative caregiver providing end of life care for a patient or family member at home:
- Re-arranging your living space – This allows the individual the ability to interact with family or other people in the home. For example, placing the bed in the living room or dining room will make it easier for friends and family to visit, and the palliative care team to provide care.
- Having the right equipment –The community nurse will help you get access to a hospital bed, raised toilet seat, walker, or anything else you might need to make the person you’re taking care of more comfortable.
- The wishes of the person in care – For some end of life patients, dying at home is important. While some may wish to be cared for at home until death others may wish to be admitted to a palliative care unit or residential hospital as their needs increase. Talk to the person you’re taking care of to determine his or her wishes about where they want to receive palliative care.
- Post death plan - Create a plan of what to do when your loved one has died – know who to call, how to proceed with funeral arrangements, etc.
It is important to remember that as a caregiver for someone near end of life, you need to take it day by day, and when you have a question, or you are not sure about something, ask your community nurse or another member of the palliative care team. They are there to help.
See also our Elizz article on palliative care for children.