When the caregiver needs care
Dear Doris,
My brother had a stroke and needs around the clock care. His fiancée is sick and possibly going into the hospital for a short stay. What are our options for respite care while she is in the hospital?
Thank you,
Elizabeth J.
Dear Elizabeth,
Your brother is fortunate to have someone in his life that will dive into the hard questions about where to find respite.
The services you seek are generally considered emergency respite care, which is temporary care for a person with some kind of special need when the primary caregiver is suddenly unable to provide care due to an unplanned event. In this case, his fiancée’s illness. Other common situations include family emergencies, such as a death in the family, a personal crisis like job loss, homelessness, or domestic violence.
Whether or not a person qualifies varies widely based on the diagnosis and availability of services in the community. The are organizations that focus solely on supporting individuals with brain injuries and their families. They provide many services including case management, access to Medicaid, and respite services. I would suggest reaching out to a local organization who does this work, if you have not already.
Because your brother requires round-the-clock care, respite tends to be more complicated. Unless you hire a professional caregiver or are lucky enough to have access to a trained volunteer or family member who is willing to stay, in-home respite is probably not an option. However, residential facilities, like nursing homes, often provide temporary beds until the situation stabilizes and the primary caregiver can resume the role. They can provide the kind of medical and personal care that your brother would require.
I know we say it often, but NY Connectscan advise about local resources. They have access to facilities and know where beds might be available, and their care managers can help you assess financial resources or payment options and make appropriate plans. NY Connects is a statewide information and referral service that has local offices throughout the state. 1-800-342-9871 or www.nyconnects.ny.gov.
I do not know what your sister-in-law has in place for your brother, but looking into palliative care is worth mentioning. Palliative care aims to help patients live as well as possible. Palliative care can be provided at any age and any stage of serious illness, alongside curative treatments, and is not limited to end-of-life care or hospice. Palliative care can be delivered in various settings, including hospitals, clinics, and at home.
Key aspects of palliative care include:
Symptom Management: Addressing pain, shortness of breath, nausea, and other symptoms.
Emotional and Psychological Support: Providing counseling and resources for patients and their families.
Care Coordination: Ensuring that all aspects of the patient's care are well-coordinated and aligned with their goals and values.
Medicare Part A can often pay for both palliative care and hospice, covering in-patient hospital stays or skilled nursing facilities.
It is always best to reach out to New York Connects or your local Office for the Aging if you have questions. Also, information about palliative care agencies in NYS can be found here.
As I said before, age, disability, and care needs are all factors when seeking emergency respite care. While often paid privately, some respite costs may be covered by Medicaid waivers, veteran benefits, or programs that provide voucher stipends.
The ARCH National Respite Network is another good resource for information and includes a form to search for respite by area code.
Proactive Tip: It is highly recommended to create an emergency care plan. This includes a list of medications, daily routines, and pre-identified respite providers who are already familiar with your loved one’s needs.
I hope this information is helpful,
Doris