How Hospice Helped My Family

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.

Dad lived with me for six years, and our family focused on keeping him as comfortable and content as possible. My sister Linda and I provided the bulk of his care, along with a stream of paid caregivers, doctors, nurses, X-ray and lab technicians, and therapists coming to the house. Our team included home-based primary care from the VA, as Dad was a veteran.

We focused on treatments and personal care that made Dad feel better right up until his final days, including massage, swimming (until he was too scared to get in the pool), 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 and lessen his Alzheimer’s symptoms, and we treated conditions that would cause physical discomfort (such as an infection). In line with his wishes, we hung a bright orange “Do Not Resuscitate” order on our refrigerator.

When Dad qualified for hospice and his doctor at the VA urged us to consider it, I admit that I hesitated, not wanting to hasten his death. But I realized it was another support for his comfort care. So I forged ahead.

Help for the whole family

I realized that hospice care was also help for our entire family. One of the benefits of bringing hospice on board is that the program focuses on more than just the patient.  

Lori Bishop, health care consultant and former vice president of palliative and advanced care at the National Hospice and Palliative Care Organization, told me 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 explains. 

In addition to hospice respite services (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 social work, 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. One night, Dad seemed worse, and we wondered whether he dying? My sister and I called hospice, and a nurse came in the middle of the night. She explained more about what to expect and examined him, saying he did not seem to be actively dying. Reassured, we were able to sleep that night. That kind of support is invaluable.

Some of Dad’s medications continued to be provided by the VA, but anything related to his primary diagnosis for admission to hospice was provided by hospice home delivery. Dad also received durable medical equipment (for us that meant oxygen) and medical supplies. Home health aides came three days a week to help us get Dad out of bed and bathed. (The VA continued to provide home health aides the other four days.) A social worker helped with both emotional and practical support. It was so nice to have someone caring about and checking in on us, the family caregivers. She also helped research body donations for programs that study Alzheimer’s, because that was Dad’s wish.

Often, hospice provides volunteers to spend time with patients, as well as other services like music therapy. Unfortunately, our hospice organization did not provide these things. (They said they were having a difficult time recruiting volunteers at that time.)

Although it is covered by Medicare, hospice is a highly underutilized service. People think of it as geared toward 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 program staff 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

After four months in hospice care, his final days were indescribably hard and sad. Dad experienced petit mal seizures caused by the Alzheimer’s (not everyone with Alzheimer’s experiences this), and three days before he passed, the seizures were nonstop all day.

There was not much we could do about it except make him comfortable. Hospice reminded me that what I could do was ensure that he continued to feel the way he did on that day he happily acknowledged me as his daughter: support him with the best possible care, give him moments of simple joy at home, and fully envelope him in love until he took his last breath. 

Courtesy Amy Goyer

We called my sister who lived out of state, suggesting that she come see Dad before she left to travel abroad for several months. She flew in the next day. While we knew his condition was worsening rapidly, I don’t think any of us really thought that would be his final day. He spent the day surrounded by music and his family — and so much love; he passed peacefully in his sleep that night.

I called hospice, and they sent a chaplain, who was a great comfort to us and turned out to be from Dad’s home state and the same religion. He helped us through those first few hours while we cried and told stories and felt numb. The social worker came and helped me with the arrangements. She made the calls and facilitated what I was unable to handle that day. It’s hard to express how much that meant to us.

After his death, hospice followed up with grief support and information, letting us know that even though it felt like our world had been turned upside down, we were not without support.

My advice for caregivers? If your loved one qualifies for hospice, don’t be afraid, don’t hesitate; find the best hospice program in your area and get started. If you decide to treat your loved one for a health condition, you can take him out of the hospice program, and he can go back on hospice care later when appropriate. And if you aren’t satisfied with the hospice services you receive, find another hospice program and make the switch.

Hospice isn’t 24/7 care; it doesn’t meet every need during the final days. But it’s a very helpful, important and even critical piece of the puzzle of support that we build for our loved ones and ourselves. I’m so grateful for the support that hospice care provided. It made a world of difference for our family.