This is one of my favorite pictures my dad and me. We were both so young! It’s safe to say that I’m older now than he was in that picture. I know they’re clichés but time does fly — in the blink of an eye.
My dad passed away in 2009. He had a lot of health problems in the last few years of his life. Being the “medical person” in the family, I often accompanied him to doctor’s appointments.
I remember being freaked out when his doctor asked him what he wanted at the end of his life. He responded immediately that he wanted no extraordinary measures. He’d had a great life and when his time came to just let him go.
As startled as I was, I was also grateful to be part of that conversation. It forced me to face reality and opened the door to further discussions with my parents.
An advance directive
Following the doctor’s suggestion, my parents made out their advance directives, which included a living will and medical power of attorney.
- Living will — a legal document that spells out what medical treatments and life-sustaining measures you would or wouldn’t want if you were terminally ill or seriously injured and could no longer communicate.
- Medical power of attorney — a legal document that designates who you want to make your medical decisions if you can’t.
Daryl Cady wasn’t that fortunate. When her mother became critically ill a few months ago, she did not have an advance directive spelling out how she wished to be treated. In the end, family members had to grapple with some fairly difficult decisions — like whether a feeding tube should be inserted. It was, but only briefly.
Her mother died comfortably with hospice care five days after she was admitted to the hospital. While it might seem like a short time, for Daryl it was a lifetime. If only she’d known her mother’s wishes, she might have been able to focus on what was most important during those days. “To only be her daughter, not a decision maker,” she said.
Statistics show that 82 percent of people in the United States believe an advance directive is important, yet only 23 percent have actually filled one out. Why so few? “I think it forces us to face our mortality,” said Daryl “and people don’t want to talk about the inevitable and the end. It’s just too scary and too frightening.”
Daryl is in a position to encourage people to fill out their advance directives and share their wishes with family members. She’s the Chief Executive Officer of Hospice of Southern Maine. Every year the organization sponsors the Thresholds Conference. The focus of a recent conference was Prepare to Care: Completing an Advance Directive.
The keynote speaker was Joan Lunden, former host of Good Morning America. She’s an award-winning journalist, a health and wellness advocate and an experienced caregiver. Joan is not only the mother of seven children, but also cared for her mother. She’s written 10 books, including one that documents her diagnosis and treatment of breast cancer three years ago. Another details her experience of caring for her aging mother.
Neither Daryl or Joan was fully prepared when they suddenly had to care for their mothers.
Joan’s brother had been living with their mother in California and he died unexpectedly of diabetes complications at the age of 56. Joan and her family lived on the east coast. “Overnight, I became the instant caregiver,” Joan says. “My mom was 88 and overcome with grief. She had lost her son. On top of the trauma, she had dementia. I sifted through papers looking for important documents. It took me months to track down stuff. I had to reconstruct her life. At the same time, I had to plan the funeral. I thought I had it under control. I was mistaken.”
Daryl and Joan learned the hard way why it’s important to make decisions about end-of-life care sooner rather than later. And put them in writing. Then you can decide what you want and who you want to be your personal agent(s) — someone who will understand and follow your wishes and be your advocate.
When to have the conversation
Having a conversation about your wishes with your spouse, your children or other loved ones is usually much easier when you’re feeling well and in control than when it’s a crisis situation. “When you’re younger,” said Joan, “you can look at it with a different frame of mind. Which is why I highly recommend that people don’t wait — especially for the advance health care directive because those are difficult concepts. Feeding tubes and respirators and organ donations. The more fragile and the older you are I think the more difficult it becomes to have the conversation.”
So, start the conversation now. You’ll be doing your family and yourself a huge favor. And remember, it’s not only about filling out the advance directive form and stipulating whether or not you want life support or a feeding tube, it’s also about your funeral, where your important papers are, and what matters to you.
Joan says she and her husband learned that lesson well and now, her children are informed. “It took a lot of trips back to the inkwell to get it all together but we now all have packets,” she told me. “My husband and I have packets that have instructions for if something happens to us.”
Thank you to Daryl and Joan for getting so personal with us. “I think that whenever we share our stories we help others and we empower them,” said Joan when I asked her why she travels around the country telling her story. “I made a lot of mistakes along the way and should have had a better plan. All the papers weren’t in place as they should have been. I didn’t know where all the important papers were so I made a lot of mistakes along the way and it just occurred to me that it shouldn’t have to be this hard. If you prepare. I had this opportunity to be able to learn from my mistakes and then share with others and help others be better prepared for this inevitable chapter of our life.”
Are you ready?
About Advantage Home Care
Advantage Home Care provides a wide variety of in-home senior services that includes dementia care. If you would like to learn more about our caregivers and the services we offer, please visit our website, send us an email or give us a call at 1-888-846-1410 or 207-699-2570.