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.
