Originally published by PBS. Original article can be found here.
Bettina’s dad Paul (89 years), a once robust and active man, was getting weaker every day due to heart failure. They met with a surgeon to consider his options but the proposed medical intervention was fraught with complications and no guarantee of being able to return him to his one passion: square dancing. He opted instead to continue taking medications to treat the problem and ponder how he could hide his increasing weakness so as not to be a burden to Bettina. Recently, a friend asked if she had considered looking into hospice. Bettina was taken aback. She always thought that hospice was just for people who were terminally ill …
Promoting independence and “successful aging” is a laudable goal for many and a common media headline. But it’s not the reality for people caring for anyone diagnosed with a terminal illness or a relative who struggles to manage day to day as a result of debilitating health conditions and growing frailty. Most people would prefer to talk about wellness rather than illness, so we tend to avoid planning for advanced illness and ultimately death. One valuable, often overlooked, and generous Medicare benefit for those caring for a family member or friend is hospice care.
Adult children tell me that if they bring up the subject of end-of-life planning, their parent will think they want to “push them aside” or “be done with them.” Spouses have told me that they worry that even thinking about it will somehow hasten death or cause their partner to die sooner. The reality is, given the right opportunity, those living with illness and frailty often welcome the opportunity to share their preferences about their end-of-life choices. Listening without judgment to the individual’s worries or advice can be a gift to them. Researching what is available to help care for a family member living with advanced illness relieves the individual from having to do the work themselves.
An important part of taking care of yourself is taking breaks. Your hospice team will offer to have volunteers come and sit with the patient or help with chores to make things easier for you. They are there to assist your family member or friend — and you — so be sure to tell them how they can help.
Hospice will be there to provide comfort and support following your loved one’s death. Bereavement services are offered to caregivers and families for at least one year. These services can take a variety of forms, including telephone calls, visits, support groups and written materials about grief.
For residential hospice, take note that the Medicare hospice benefit does not cover room and board in an assisted care facility (nursing home, hospice center), but will pay for care related to the terminal illness. However, there must be a contract between Medicare and the hospice providing the care.