An estimated 44.4 million caregivers provide care to an adult in the U.S. The typical caregiver is female, in her mid 40s assisting a mother, grandmother, or father and more than half are widowed or living alone.
The most common activities consist of helping to manage everyday living, such as housework, meal preparation, grocery shopping, assistance with finance or providing transportation. These are easily communicated needs. With the aging of our baby boomers, caregiving needs are escalating and caregivers worry about aging, issues surrounding chronic and life limiting illness and end of life care.
Can you articulate your mother’s wishes at the end of life? Who will speak for her in the event she cannot speak for herself? Who will advocate for her choices and, perhaps more importantly, are you able to carry out her wishes with dignity, respect and the assurance that her wishes are met?
Have you had the “talk” about the importance of Advance Care Planning?
Talking about death and dying is difficult. The approach might begin with asking a series of “what if” questions, or posing scenarios that will facilitate a deeper discussion. These need not be relegated to a terminal diagnosis or death. Most caregivers do not feel prepared to make decisions in the face of a sudden or unexpected illness or event, even when recovery is expected.
Advance care planning is a process of preparing for a future healthcare crisis in the event you cannot speak for yourself or make your own decisions and, as such should be revisited every 5-10 years. Important components include advance directives, legal documents that detail in writing the type of medical care desired in the event of illness or serious injury and the inability to speak for themselves or make their wishes known. It includes a living will and a durable power of attorney for health care or a health-care proxy designating someone to make healthcare decisions for you. These forms are state-specific.
This is a tough subject and there are countless excuses including superstition that the approaching the subject will bring bad luck. According to Pulitzer-prize winning author Ellen Goodman and co-founder of The Conversation Project, most people agree that they do not wish to burden their family with tough decisions, yet 56% have not communicated their end of life decisions. The National Hospice Foundation estimates that about 75% of Americans say they favor advance directives, but only about a third actually write them down. What is more important is having the conversation and selecting an advocate, someone who can be trusted to speak on your behalf and honor your wishes.
Several organizations have booklets, forms and online kits to help you get started. Your local hospice can provide resources and in some cases, speakers trained to inform and assist in completing these documents and tools to help start the conversation. For state-specific documents, contact the National Hospice and Palliative Care Organization (Caring Connections website) or your state Bar Association.
Many States honor the documents provided by Five Wishes. The organization helps individuals articulate their desires for end-of-life care, and offers guidance to families trying to talk about the aging issues that too often arise in critical or crisis situations where discussion can be difficult, if not impossible.
The five wishes are:
• Who do you want to make health care decisions for you when you cannot.
• What kind of medical treatment do you want or not want.
• How comfortable do you want to be.
• How do you want people to treat you.
• What do you want your loved ones to know.
We have learned from and experienced the wisdom of many mothers. A mother’s gift to her family should include her goals and wishes at the end of life. Your gift will be the promise of a lifetime, that she has an advocate, one who will enable her to maintain control over how she is treated and experience the end of life care and death she desires.
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Jane Van Bergen is a public relations professional with more than 20 years in commercial and retail marketing communications, media relations and nonprofit strategies. As an entrepreneur and past owner of a local business, her background on both sides of the desk is a valuable asset to developing public awareness and community outreach campaigns. A strong advocate for hospice and palliative care, she previously served as the director of communications and public relations for a large hospice and frequently writes on quality end-of-life care, caregiving and issues on aging. Before entering public relations, Ms. Van Bergen was a co-owner of an art gallery with stores on both the east and west side of Cleveland. Jane has presented locally and nationally on nonprofit strategies as well as trends, issues and challenges to branding hospice and palliative care to the community.