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 the palliative care team
Often, palliative care and family support will be provided in the home by a number of people. A palliative care team may include community nurses, therapists, and personal support workers.
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 symptoms of the person you’re caring for. Nurses can also help to answer any questions you may have to help you understand what is happening to the person in your care and what to expect as things change. They can also connect you to helpful community resources and services.
Personal Support Workers (PSWs) – Support workers provide personal care, assist with household tasks, and provide company for your loved one when you can’t be there. Nurses and PSWs are there to support you. They can reassure you that you are providing end-of-life care correctly.
Physiotherapists and Occupational Therapists – These health care professionals can help you determine what additional equipment may be needed in your home.
Doctor (for In-Home Visits) – Sometimes as health conditions and illnesses progress, 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 if 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, volunteers will visit the home to sit and talk to the person. They may also just sit while he or she is resting so you can run errands or do personal tasks. 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 the person in your care to appointments. There are other simple tasks like running errands that they may be able to help with.
Other palliative care tips
Other things to consider if you are a palliative caregiver providing end-of-life care for a person 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 for 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 receiving care – For some individuals, 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 care 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 for what to do when the person has died – know who to call, how to proceed with funeral arrangements, etc.
It can be very difficult to care for someone near the end of life. 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.