Challenges of caregiving

Many people consider it a duty, calling, or even a privilege to care for a loved one who is receiving hospice care. Family caregivers are essential to hospice care at home. The hospice model of care depends on additional caregivers beyond the medical team, whether they be unpaid family and friends or hired caregivers.
 
Caregiving can be both rewarding and difficult.
 
Many caregivers struggle with anticipatory grief, guilt, anger, anxiety, and sadness. As the person in hospice care declines, caregiving responsibilities may increase, and caregivers may find they have less time to care for their own mental and physical health. They may not eat or sleep well, and over time, may experience exhaustion, isolation, burnout, or their own illness that makes caregiving difficult.

Fortunately, hospice care is structured to provide support to the hospice patient and their unpaid caregivers who fill these essential caregiving roles. Hospice teams address many of these caregiving issues as part of routine care of the patient and their support system.

​Read more about coping with the challenges here.

How hospice helps

When someone has a limited life expectancy, family members and other loved ones are suddenly thrust into the role of caregiver, often with little preparation or knowledge of what to expect. Even if they have been providing care throughout a long-term or chronic illness, the shift to hospice care is a new and daunting experience.
 
Hospice team members are aware that family caregivers may feel unprepared and support them by developing a care plan, providing information, and answering questions. Caregivers also are given practical tips, advice, and strategies to help them manage their role as caregiver, addressing issues such as medication administration, nutrition, and helping the patient with personal hygiene. Caregivers can call hospice at any time with a question, concern, or advice.
 

It is important to find ways to care for yourself as well as for your loved one. Eating properly, getting enough rest, and, if you can find the time, exercising regularly, contribute to a sense of well-being and help your overall health. If you are fortunate enough to have a network of family and close friends nearby, you may want to take turns caring for your family member in hospice care. If family, friends or neighbors offer to cook, clean or shop, consider accepting their offers; helping will likely be as gratifying to them as it is beneficial to you. Don’t be afraid to ask for support from neighbors and friends, who are often eager to help if they know what is needed.
 
Some caregivers, if they have the financial ability to do so, may find it necessary or useful to hire additional help from agencies that provide additional caregiving through licensed practical nurses or certified nursing assistants. Families sometimes also enlist the services of death doulas, who support the person in hospice and help unpaid caregivers with practical matters. If you want and can afford additional caregiving help, make sure to discuss this with the hospice so they know about such arrangements.

Because caregiving can be stressful, reducing your stress level is important. Massages, walks, warm baths, or talking with friends are just a few ways to nurture yourself and reduce tension you may feel.

You may find it helpful to read books and websites about caregiving, join a caregiver support group, or seek counseling. Some support groups offer connection through the phone or internet, allowing you to remain at home with your loved one. These activities provide opportunities to express your feelings, worries, and thoughts. They’re also a chance to discuss and learn how others deal with challenges you are facing. Equally important, counseling, whether in a group or individual setting, provides the comfort of knowing that others can support your mental health during this time. 
 

Caregiving often involves irregular hours and little time “off.”  It isn’t so much a matter of “if,” but when you need a break, take it. You can try early on to find others willing to step into the caregiver role periodically so you can have some down time. The hospice should be able to provide an adult volunteer who can visit for an hour or two each week so you can take care of other chores or just relax.
 
If a longer break is needed, or there is a sudden change in the household that temporarily means that caregiving support is challenged (e.g., hospitalization of the primary caregiver due to sudden illness), speak to your hospice provider about arranging for respite care, which provides for care for the patient outside of the home (usually either in a local nursing home or hospice inpatient facility) for up to five days.