Hospice is patient and family-centered, meaning that it is designed to look after the needs of the patient as well the needs of the caregiver.
The final phase of the individual’s pancreatic cancer journey may be a very intense experience. Caregivers provide a very loving gift by ensuring that the people they love die with peace and dignity.
Many caregivers say that caring for a loved one nearing death was an important time of personal growth. Providing care for loved ones in this way may also help with the grieving process after death. The experience often brings a great sense of joy and satisfaction in having helped to make a loved one’s last days happier and more peaceful.
As a caregiver who has helped a loved one live with pancreatic cancer, you understand how cancer changes lives. You have gone through the physical and emotional ups and downs of the disease along with your loved one. You have been there to listen and help your loved one find the best treatment options. You have offered encouragement, comfort, and help in many different ways. As a caregiver, you are vitally important to the one you love.
A person living with advanced pancreatic cancer usually has a variety of symptoms that caregivers try to manage. The needs of a cancer patient in hospice will probably increase over time. Each patient’s experience will be different. Caregivers may provide:
- organizing and giving medication.
- monitoring symptoms and discussing treatments with loved ones and hospice staff.
- providing assistance with personal care such as bathing, dressing, eating and using the toilet.
- listening, talking, reading or playing music.
- providing caring companionship and love.
- handling insurance and other financial matters.
- paying bills.
- coordinating visits from family, loved ones, friends and hospice staff.
- discussing last wishes to ensure they are carried out (if the caregiver is the healthcare power of attorney).
During the hospice journey many memories are created – the last memories that caregivers and family members will share with their loved one. Keep this in mind when planning for end-of-life care. Becoming a home caregiver for someone who is dying may come suddenly or after many years of treating pancreatic cancer. Take time to look within and think about personal strengths and limitations. Caregiving is extremely rewarding, but also very demanding. It is important for caregivers to maintain their own self-care or they will not be able to care for their loved one at the most crucial times.
Hospice care is flexible and can meet the needs of most individuals and families. Since home care is not always possible, try to be clear about what is possible. Then, plan for what is best for everyone involved without worrying about what other people might expect.
Questions for Caregivers to Ask Themselves:
- Am I physically strong enough to lift and move my loved one?
- Do I have any health issues that may limit me in providing care?
- Can I take care of personal and family needs at the same time?
- Can I afford to take time off from work if necessary?
- Do I want to provide end-of-life care at home?
- Could I handle being a caregiver for several months?
- Do my loved one and I want death to occur at home or somewhere else? Does everyone involved in caregiving understand how this decision will be carried out?
- Do I have family members and loved ones who are willing and able to help?
Caregivers and the Home Hospice Team
Caregivers and the hospice staff will work together to keep the patient as comfortable as possible. The staff will help set up a space in the home where care is easiest to give. Hospice arranges and provides for all equipment and supplies that are needed to care for the patient.
The hospice staff and volunteers are available by phone 24 hours a day to answer questions. Together with caregivers and patients, the hospice team will create a care plan that is based on specific needs. The care plan includes visits from the hospice team members and can be modified on an ongoing basis to meet the patient’s needs. The following is an example of scheduled visits from hospice staff:
- Hospice nurse: once or twice a week.
- Social worker: once a month.
- Chaplain: once a month.
- Home health aide: one to three times a week.
- Volunteers: several hours a week as needed by caregivers.
The hospice staff may visit the patient’s home more often, if needed. They will also prepare, train, guide and support caregivers throughout the hospice experience.
Working Effectively with the Hospice Team
Remember, the caregiver is a vital part of the team. Because home hospice care entails hospice staff visiting the home only several hours a week, caregivers are responsible for the loved one’s care for the rest of the time. The day-to-day care of the patient is essential to good hospice care. The hospice staff will be there every step of the way to help provide this care. Here are tips for working well together:
- Create a notebook to keep caregiving information in one place; bring this notebook along when talking to the hospice staff.
- When describing a new symptom, give as many details as possible, such as time of onset, duration, strength, recurrence and steps taken as a result. These details will help the hospice team find the best solutions.
- Always feel free to ask questions and seek help from the hospice staff.
- If something is not clear, keep asking questions until it is understood completely.
Caregivers should expect the hospice staff to listen respectfully and respond quickly at any hour of the day or night. A 24-hour hospice emergency number will be provided; be sure this number is kept in an obvious and visible place.
Organization Tips for Caregivers
Caregivers keep track of many types of information regarding the patient’s care. Setting up and maintaining an organizational system that works will make life as a caregiver much easier. Some people are able to organize all of these tasks and schedules by themselves, but most people need help. Hospice staff can help develop an organizational system. Or, caregivers can ask a trusted family member or friend for help.
Caregivers and Work Obligations
Caregiving does require a time commitment. The amount of time and energy needed to provide care for someone is not easy to predict. Sometimes a rotating schedule with other family members and loved ones is helpful. However, as caregiving can be very demanding at times, it may be necessary to take time off from work at some point. Caregivers should talk with employers about flexible hours, schedule changes, or working from home, vacation and/or sick leave time.
Serving as a caregiver for an immediate family member (spouse, child or parent) may be covered by the Family Medical Leave Act, which protects an individual’s job standing and benefits during unpaid leave of up to 12 weeks during any 12-month period. These 12 weeks can be used consecutively or broken up into months, weeks, days, or even hours. As not all companies qualify for this benefit, consult the employer’s human resources specialist for more specific information.
End-of-Life Comfort Care
The hospice staff will provide information about ways to keep the patient comfortable. The patient’s needs will change over time and the hospice team will help families understand and anticipate these changes. If questions arise, contact a member of the hospice staff.
Here are some ideas that may help keep the patient comfortable:
- Let the patient make decisions about food, activities, and visitors.
- Ask what kind of lighting he/she prefers.
- Ask what music he/she likes.
- Ask the patient if he/she would like to hear books read aloud.
- Sit in silence together.
- Make sure the caregiver’s hands are warm before giving a bath or touching the patient.
- Gently massage the patient’s hands and feet.
- Let him/her know that it is okay to talk about anything, even if those topics are difficult to hear.
- Ask what he/she prefers to eat. Ask about having family meals together. Even if the patient has no appetite, he/she may still appreciate the company. Or, he/she may find that the sight and smell of others’ food is nauseating.
- If providing care becomes frustrating, leave the room for a moment to calm down.
Self-Care for Caregivers
Taking care of one’s self as a caregiver is very important. There are several ways to make the job of providing care less difficult.
Caregivers may need breaks to avoid physical and emotional exhaustion. Hospice offers respite care to relieve caregivers for up to five days per month. Hospice benefits pay for the patient to be cared for outside the home (at a hospice facility or other residential care facility) while the primary caregiver rests and spends time on personal interests. Caregivers can visit their loved one at any time during this period of respite care.
Talk with hospice staff about arranging for respite. Try to plan ahead as respite care may not be available immediately. Make sure to get enough rest. Fatigue is the number one challenge for caregivers.
Caregiving is a 24-hour-a-day, 7-day-a-week job. Most caregivers cannot do it alone -- they need help. Asking for and accepting assistance may be hard, but will give other loved ones the opportunity to serve and feel good for doing so. Talk to family members, loved ones, and friends about when and how they can help and give them specific tasks to do, such as grocery shopping, housekeeping, or picking up prescriptions.
Make a list of helpers to call on, people who are trustworthy and reliable. Talk with these people and tell them what is needed.
Make up a weekly schedule of when helpers will be available. Write down all the information necessary to stay in touch with the helpers.
Caregivers may also wish to keep an ongoing list in a convenient place of specific tasks that need attention. When someone unexpected offers to help, refer to the list.
If outside help is hired, such as home health aides, write a list of duties so these individuals will know exactly what is expected of them. Hospice does not pay for the services of any private professionals that are hired.
Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note that any personal information you provide to PanCAN’s associates during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and treatment efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so.