November 4, 2009

Trinity Pathway Hospice and Palliative Care Programs Celebrate National Caregivers Month

By Sandie Nichols, LCSW
Manager of Palliative Care and Social Services
Trinity Visiting Nurse & Homecare Association

It is an interesting coincidence that November is both National Hospice and Palliative Care Month and National Family Caregivers Month.  Chances are that as we age, we will either become a caregiver for a loved one or will need care ourselves.  We care for spouses, parents, grandparents, siblings, children, and friends. The average caregiver provides around four and a half years of care to the individual who is ill. Caring for a person who is at the end of their life and will not recover is one of the most rewarding but also one of the most stressful of human experiences. People can feel intense psychological pain in response to caregiving and grief, and this suffering can go on for months and years.

Caring for a loved one with advanced illness is full of pitfalls and opportunities. The extent to which caregiving is a blessing or a burden depends on many factors.  Among these are the length of an illness, the intensity of the patient’s needs, the nature of the relationship between the patient and caregiver, the use of professional caregivers to supplement the care, and the emotional and physical health of the caregiver.

The optimal length for a period of caregiving appears to be months rather than years.  Most of us can find the inner resources to devote to the needs of a loved one for a distinct period of time.  However, when caregiving responsibilities are considerable and no end to caregiving is in sight, it is normal to feel overwhelmed. Over one third of terminally ill patients have substantial care needs.  Long-term, open-ended caregiving is characteristic in these situations and creates a great deal of stress for the caregiver.  This stress can be emotional, physical, and financial.

Many caregivers forget about their own needs in this process.  They may focus on the patient to the detriment of their own health. Hospice and Palliative Care focus on providing support to the caregiver.  In some situations, it becomes clear that the loved one needs to step out of the caregiver role because it has become too overwhelming for them.  They need to be a wife, rather than a caregiver, in order to care for themselves so they can continue to be available to the patient for emotional support. This is not in any way a failure on their part.  We affirm the care they have given their loved one for so long and support them as they continue to provide love and emotional support for the patient.

Providing a residential hospice facility is another way we are able to offer support as well as an alternative for care for the terminally ill. The facility opened in November of 2005.  Located at Trinity at Terrace Park, it has many amenities to ensure a comfortable, homelike setting for the hospice patient and their loved ones.  As the first hospice in our community, Pathway Hospice opened in 1981 as a residential hospice.  Over the years, the focus of hospice moved toward care of the terminally ill in the home setting, and the need for a residential program declined.  However, many of the societal changes we’ve observed in recent years caused Pathway Hospice to revisit the need for such a program.  For example, patients now live much longer with chronic illnesses such as heart and lung disease or dementia, so caregivers are often frail with health issues of their own.  Women, who historically have provided 75% of care for ill family members, now often work outside the home.  Many adult children leave the community and their parents behind in order to find job opportunities.  For situations such as these, residential hospice provides families with an option where they know their loved one will receive excellent care in a setting where patient comfort and dignity is the focus and where family and friends are welcome to stay with the patient as much as they are able, even around the clock.  If you would like to learn more about the facility, please call Trinity Pathway Hospice at (309)779-7600.

Sandie Nichols is Manager of Palliative Care and Social Services at Trinity Visiting Nurse and Homecare Association