I was sitting at the dining room table in the place that had been Dad’s since I was a little girl. On the outside, I was calmly listening to the nurse and matter-of-factly filling out detailed forms. But, on the inside, I was struggling. I felt the weight of making a huge decision: It was time for hospice care for my beloved father.
As I took a break from the needed paperwork, my eyes were drawn to Daddy’s bronzed baby shoe, displayed on a nearby cabinet. The shoe was the symbol of life’s start, the hospice forms were signaling an end. The circle of a 94-year life was coming to a close.
I didn’t believe Dad would die the next day or even the next week. But his congestive heart failure and Alzheimer’s disease had progressed to a point where he qualified for hospice, a program that could help meet his needs, and with which my sisters and I would find the support we would need as we dealt with our own fears and grief. We knew he would die at home and we wanted to be as prepared as possible.
Making the decision
Fortunately, my father had made his end-of-life wishes known, in conversations and in his living will, long before Alzheimer’s rendered him unable to make or share them. I wanted Dad to die on his own terms. It was up to me, as the one who held power of attorney, and my sisters to interpret those wishes and make plans accordingly.
For several years, our family focused on comfort care for Dad. That is a broad category that includes palliative and hospice care and does not necessarily mean that all medical treatment ends.
In fact, for us comfort care meant intensifying support, which my sister Linda and I welcomed because the two of us provided the bulk of his care along with a stream of doctors, nurses, X-ray and lab technicians coming to the house. At home, we could focus on treatments and personal care that made Dad feel better, including massage, reiki, acupuncture, aromatherapy, movie musicals, Lawrence Welk, and a hot shower daily (his best quality-of-life moment all day). We continued his medications to alleviate anxiety, lessen his Alzheimer’s symptoms and treat conditions that would cause physical discomfort. In line with Daddy’s wishes, we hung a bright orange “Do Not Resuscitate” order on our refrigerator.
Help for the whole family
I viewed hospice as another part of the picture that was Daddy’s comfort care — and then I realized that it was also help for our entire family. One of the benefits of bringing hospice on board is that the program focuses on more than the patient.
Lori Bishop, vice president of palliative and advanced care at the National Hospice and Palliative Care Organization, explains that hospice is the only Medicare benefit for which the patient and the family are considered a unit of care. “That’s why you get comprehensive services like respite for the caregivers — no other sector of Medicare includes the family,” she says.
In addition to respite (primarily provided in facilities — not at home), hospice programs are required to provide care, such as a home health aide to help with bathing, plus chaplain and bereavement services, including grief support, for up to 13 months after the patient dies.
In our family’s case, a hospice nurse visited weekly and a nurse was on call 24/7, which provided much peace of mind about handling Dad's symptoms. Medications related to his primary diagnosis were provided by home delivery. Dad also received durable medical equipment (for us that meant oxygen). A social worker helped with both emotional and practical support, including helping to research body donations for programs that study Alzheimer’s, because that was Dad’s wish.
Although it is covered by Medicare, hospice is a highly underutilized service. People think of it as geared for the last days of life, not the last months. Bishop urges families not to wait. "Bringing hospice in won’t make that person die any sooner. In fact, there are a lot of studies showing that people live longer with better quality of life if they get hospice in sooner,” she says.
Bishop suggests that families research hospice programs. Determine what your loved one’s needs are and then look for hospice care to meet those needs. Interview people at programs in your area and ask about the specific services they provide. I asked friends and colleagues for personal recommendations as well.
Fully loved and supported
A few months before Dad died in June, as my nephew and I settled him in his recliner after a short walk, I leaned down to give him a hug and a kiss. I asked if he was OK. “Yes. My daughter,” he said in a loud and clear voice, as if to proudly acknowledge that he knew exactly who I was. My heart nearly burst with joy! It had been a long time since he had expressed knowing me so distinctly. Clearly, he felt safe, loved and surrounded by his people.
After four months in hospice care, his final days were indescribably hard and sad. A lot was out of my control. But what I could do was ensure that he continued to feel the way he did on that day he acknowledged me: supported with the best possible care, experiencing moments of simple joy at home, fully enveloped in love until he took his last breath.
Amy Goyer is AARP's Family and Caregiving Expert and author of Juggling Life, Work and Caregiving. A recognized media authority, she has appeared on Today, The Doctors and Dr. Phil, and had interviews in The Wall Street Journal and People. Connect with Amy on Twitter, Facebook, Youtube, LinkedIn, amygoyer.com and in our Online Community.