Caring for a loved one who is seriously ill or dying is one of the most physically and emotionally demanding situations a family member may ever face.
There is a sense of loss and sadness that begins when you learn of a serious or life-limiting diagnosis. And the levels of stress can continue to grow throughout an illness. There can be a financial toll that caring for a dying loved one brings. Even when the role of caregiver ends, there are new issues that arise as you incorporate the loss into your life.
Support of the Team
One of the most unique aspects of hospice is that it brings together an entire team of clinicians with various expertise, who all work together to support each patient and patient’s family. As a hospice patient you should take advantage of this team.
Your Hospicare team care team can include:
- Primary Nurse Case Manager is a registered nurse, trained in hospice and palliative care, manage your physical care in consultation with your physicians.
- Social Worker to provide emotional support and discuss non-medical needs such as navigating insurance or Medicare/Medicaid, securing power of attorney (POA) and health care proxy (HCP), provide guidance about funeral arrangements
- Licensed Practical Nurse (LPN) or Home Health Aide (HHA) to help with personal care and everyday activities.
- Spiritual Care Coordinator to offer counsel that is respectful of your spiritual beliefs, to coordinate with the clergy of your faith community, and to provide spiritual support related to dying and grief.
- On-call nurses are available to answer questions and provide support when our offices are closed. You can call our main number (607-272-0212) at any time and be connected to an experienced hospice nurse. If the situation cannot be resolved over the phone, the on-call nurse will come to your house to provide care.
- Volunteers to offer companionship to your loved one and provide respite so you can take a break.
- Bereavement counselor follows your family for 13 months after the patient dies. This can be one-on-one counseling, support groups, mailings or phone calls by volunteers. If there are young children in the family, our bereavement counselors can offer suggestions and books to help the children understand death.
- Hospicare medical director consults with your primary physician and works with the rest of our team to make sure you have the best care possible.
- Your primary physician (or specialist) is still involved in your care. Our primary nurses or medical director will keep your doctor’s office up to date on your condition and needs.
Every patient and family has a primary nurse, social worker and bereavement counselor assigned to their team. Other members are involved in your care as needed or based on your requests.
The clinical care team works together with you to determine the appropriate plan of care and to provide the following services:
- Manages pain and symptoms
- Supports you and your family through the emotional, psychosocial and spiritual aspects of dying and caregiving
- Provides medical equipment (such as a hospital bed or shower chair) to make caregiving easier and safer.
- Prepares you on how to address your loved one’s specific care needs, and what you should expect as the condition changes
- Teaches you how to provide care, including how to administer medication, clean wounds, or change bed sheets while your loved one is still in bed
- Provides bereavement care and support
Many people do not understand the support and comfort that Hospicare can bring to patients and families at the end of life’s journey. Time and again partnerships are created between family caregivers and our staff that are noted for their deep compassion and caring.
Taking Care of Yourself
When your loved one requires your careful attention and devotion, it’s understandable to feel the need to be available at all times. It can be easy to lose yourself to the caregiving process. In order to remain present, both emotionally and physically, for your loved one it’s important to take care of yourself. Talk with your hospice team. They’re not just your loved one’s team; they are there to support the patient and the family. So go ahead, ask questions, share your concerns or fears.
We offer the following suggestions for helping you take care of yourself:
- Eat a regular, balanced diet.
- Exercise, even if just a brief walk outside.
- Rest. Sleep in a comfortable bed and try to have periods when you can get uninterrupted sleep for several hours. This may mean that you’ll need someone else to sit with your loved one or be available if they need something
- Ask for help or accept offers of help.
- Create a list of tasks that others can help with. This may include doing laundry, preparing meals or grocery shopping, walking the dog, mowing the lawn, picking up visitors at the airport. When friends ask “how can I help?” share the list with them.
- Share caregiving responsibilities. Are there other family or friends who live nearby who can take caregiving shifts? Or are there certain tasks that someone else might help with?
- Take time for yourself. Don’t feel you need to give up favorite activities. Ask for help so you can still have that time to recharge yourself.
Local Resources
Our area has a wealth of community and governmental agencies and organizations devoted to offering support when and where it’s needed. These are a few of the organizations we partner with or recommend for additional support:
- Alzheimer’s Association of Central NY (http://www.alz.org/centralnewyork/) provides resources and education related to Alzheimer’s disease
- Cancer Resource Center of the Finger Lakes (http://www.crcfl.net/) offers support, education and advocacy for all kinds of cancer diagnosis. Their various support groups offer support to patients and caregivers.
- Access to Independence (ATI) supports and assists individuals with disabilities in Cortland County.
- Finger Lakes Independence Center (FLIC) supports and assists individuals with disabilities in Tompkins County.
- Tompkins County Office of the Aging (http://www.tompkinscountyny.gov/cofa) provides resources and services to support senior citizens throughout Cortland County.
- Cortland County Area Agency on Aging (http://www.cortland-co.org/434/Area-Agency-on-Aging) provides resources and services to support senior citizens throughout Cortland County.
- Family & Children’s Service of Ithaca provides services to respond to the social, emotional, and psychological needs of older adults and their families through their Geriatric Mental Health and Caregiver Support Services.