If you are around terminally ill patients and their caregivers on a regular basis,
you may have noticed the
following just as I have:
1) Patients miss personal contact with friends and family
who may not be able to visit them regularly, particularly if patients live at
new locations such as nursing homes. Some may not visit because of
transportation issues or because they find the idea of visiting a hospice
patient in person too depressing. I had a patient once whose mother refused to
visit him due to the neighborhood where the nursing home was located.
2) Patients want to feel more empowered and in control of
their lives. They want to be able to initiate interesting conversations about
current events, recent stories about family and friends, and feel like they are
making exciting contributions to conversations that welcome their input.
3) Caregivers experience the loneliness of not being able
to socialize with family and friends freely the way they did before they became
responsible for someone terminally ill. Some friends and family may have
stopped inviting them out because they think caregivers will probably not be
available. Some may feel awkward talking to caregivers in person about their
problems.
4) Caregivers often feel stressed out spending so much
time being caregivers, often with few outlets for outside communication. They
can benefit from stimulation beyond their caregiving world and feel like life
isn’t passing them by.
Research often validates what
we already observe simply from living life.
When I ran across loneliness research comparing the loneliness experiences of the dying, their caregivers,
and the general population, I began drawing my own conclusions based on my own
observations. The Institute for the Study and Treatment of Psychosocial Stress
in Toronto, Ontario, Canada performed research involving 37 dying cancer
patients, 78 caregivers and 128 participants from the general population. All
responded anonymously to a 30-item questionnaire describing their experience of
loneliness.
Results indicated that
dying patients and their caregivers had significantly higher scores than the
general population did. These results are another wake-up call emphasizing the
importance of supporting patients and caregivers. The
average person can help patients and caregivers in several ways:
1) Offer to assist a patient and caregiver
by temporarily relieving some of their burden physically or financially.
2) Share uplifting activities with them.
Welcome their input in conversations.
3) Keep them informed about services that
can help them. Aid them in getting the services.
4) Be a good listener and offer
encouragement.
This video
titled I Feel Socially Isolated: Caregiver Confessions with Leeza
Gibbons gives more loneliness solutions that can benefit the
patient-caregiver experience:
Frances Shani Parker,
Author
Becoming
Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in
e-book form at
Amazon and Barnes and Noble booksellers.
