As noted in our previous post, chronic and terminal illnesses take their toll not only on the patient, but on family and loved ones as well. In addition to the emotional and physical duress that everyone involved is experiencing, caregivers and loved ones may find themselves at odds with how to manage their dear one’s needs towards the end of his or her life in addition to handling their stress at this time.

In addition to the pragmatic measures that patients, partners, spouses and others can take to help make the end of a life a little more manageable, there are more deeply personal steps that can help everyone through this most difficult time and into the future.

Having “the” conversation

Beyond the practical day-to-day issues or legal matters to consider, there is also, of course, the emotional side of going through a terminal illness with a parent, spouse or partner, sibling or child. The need to make well-considered decisions and honor the patient’s wishes means conversations must take place.

There’s no question that conversations about treatment desires or end-of-life issues are difficult and many people avoid them because of the inherent discomfort. However, these can be a source of support and solace for terminally ill people and their family members.  They’re also important for physicians to have with their patients. In fact, more doctors are engaging in advance care planning discussions with patients because these are now covered by Medicare.

The Conversation Project (theconversationproject.org) has starter kits that enable patients and loved ones to have those tough conversations with each other about advance care planning and other matters associated with terminal illness. The organization advocates for these conversations and says that they can help bring family members closer together.

Conversations that go beyond the legal and medical to personal matters can also be healing for the family and the patient. Time is now feeling more precious; personal exchanges and all those “I should have said” moments may bubble up with more urgency or poignancy. You may experience a range of emotions during this time—sadness, anger and regret among them.

Ira Byock, M.D., a longtime hospice advocate and author of “Dying Well: The Prospect for Growth at the End of Life” believes that the transition to death can be one of life’s most meaningful experiences— both for the terminally ill and loved ones. It can be a time of reconciliation and demonstrations of love at a time of great distress. Dr. Byock suggests that dying people and their families exchange the following words with each other:

• I love you
• I forgive you
• Forgive me
• Thank you
• Goodbye

You can also find many excellent ways to broach these conversations with terminally ill loved ones, as well as tips for what to expect online at the Help Guide.

Hospice care and support

Hospice care encompasses physical, emotional, and spiritual needs for patients for whom a cure is not possible and aggressive treatment isn’t desired. At the Center for Hope Hospice we offer symptom relief, pain control, and a great deal of support for our residents and their families.
 
Our spiritual counselors and social workers are trained to listen respectfully and support the journey of our patients and their family members regardless of faith or beliefs; our bereavement support groups, for family members of our residents and those we serve in the community, are held in both Father Hudson House in Elizabeth and Peggy’s House in Scotch Plains.

People find great benefit and comfort in talking to trained counselors as well as others who have faced similar circumstances. Guidance and support groups help family members deal with feelings of anger or fear, provide a safe space to express feelings, enable one to explore spiritual concerns and much more. Whatever helps the bereaved navigate the choppy waters of grief, the Center is here to help. For more information about the Center for Hope’s spiritual and bereavement services, please contact us at 908.889.7780 or email info@cfhh.org.