Palliative care, also increasingly known asSupportive Care, may be one of the most misunderstood terms in healthcare. Many people believe it’s the same as hospice care and it means the end of life. But palliative care is different from hospice, and when put in place, palliative care can bring hope, control, and a chance at a better quality of life for seriously ill patients and their caregivers.
Caregiving can last for many years. Caregivers set their own lives aside to care for someone else. When that person dies, caregivers have to figure out what to do with their lives now. There is no preparation for this transition. Generally you are so busy caregiving, and life changed so long ago, that there has not been time nor energy or even the psychological will to think about what comes next. Here are some tips that might help you during this time:
Before you or a loved one is faced with a life limiting illness or cognitive impairment, it is important to have completed the legal paperwork necessary for estate planning. Unfortunately, this often not the case, and family is trying to get the necessary legal documents completed under difficult circumstances, such as cognitive impairment, where someone is no longer able to manage his/her affairs or a medical crisis. (see Tip Sheet: Making Decisions: What Are Your Important Papers)
When someone is no longer able to handle his or her own financial or personal affairs, the court can appoint an individual or professional to act on behalf of the incapacitated person. When a minor child is involved, it is generally called a guardianship. When an adult needs someone, it is called a conservatorship. However, states define these terms differently and you need to consult an attorney in your state to determine what the law is.
The Advance Health Care Directive (ADHC) allows you to appoint someone (health care agent, attorney-in-fact, proxy or surrogate) to make a decision for you if you can not speak for yourself. It is also called the Durable Power of Attorney for Health Care, Natural Death Act, Directive to Physicians or a Living Will. (The living will is slightly different; check on what is recognized in your state.) Every state recognizes the ADHC, but states have their own forms, as laws vary from state to state.
As you face aging and the need to make plans for your future, you face having to make decisions about many aspects of your lives. These legal and health care decisions not only protect you from others making decisions for your care that you do not want, they also protect family and loved ones by giving them guidance in the care that you would like to receive. After completing all the legal paperwork, the next step is to sit down and talk to family about the decisions you have made and why.
The intervention assists caregivers in finding meaning, purpose and value during the end-of-life caregiving experience.
Suncoast Hospice is the nation's largest not-for-profit, community-based provider of hospice and palliative care. The Hospice provides care for tens of thousands of people annually, and leads innovative service delivery, social change advocacy, technology development and other end-of-life initiatives.
At 89, my dad was a stubborn force of nature. He had been taking care of my mother at home for some 14 years. Mom was also 89, had been Dad’s wife for 66 years, and she was in the late stages of Alzheimer’s disease.