Eighty percent of Americans say that they would like to die at home, yet only twenty percent actually do. Of course, some will die in accidents, or while they are traveling. Some die unexpectedly of a heart attack or stroke while they are out of the house. Mostly, however, people die in hospitals or nursing homes. Why not at home? Because dying at home is not a simple proposition. It takes careful planning, good resources, help, and determination.
Dying at home can be a burden for family and friends, especially if the dying person becomes bed-ridden or unable to help in his or her own care. A realistic assessment of the patient’s competencies, as well as the caretaker’s resources, is critical in making the decision to bring a person home. I never fully understood the complexity of it, despite having written about death and dying for many years, until my son-in-law, Don, died of brain cancer a few months ago. He had been in a skilled nursing facility for a week; however, the facility was unable to manage his pain. They suggested bring in hospice for pain management, but the insurance wouldn’t cover the cost of the nursing home if Alexis brought in hospice care. On a Friday night, he called Alexis saying that he was in pain and the nursing facility couldn’t help. Alexis was able to bring him home by Wednesday. He was home for two and half weeks before he died. It takes a while to arrange for home care.
The first set of problems, well anticipated by the hospice nurse who helped us through the end, was creating a good space. The New York Times offers a list of changes that need to be made to the house itself, including the installation of grab bars, risers for the toilet seat, and a shower seat in the bathroom. But that’s only necessary if the dying person is mobile. Many are not, especially in the last few weeks. Don could no longer get out of bed when we brought him home, so Alexis needed help to move him, to bathe him, and to keep him in clean clothes. Insurance companies don’t cover in home help unless you have long-term care insurance. If you don’t, you need to find other resources.
An international organization, dedicated to helping people all over the world die at home, suggests that the caregiver, as a first step, call for a “gathering” of friends and family who are willing to help. Together, they divvy up the tasks and create a schedule that reaches as far into the future as possible. Of course, dying not doesn’t happen on a schedule. The need for help can fluctuate throughout the day in unexpected ways. Some regular, professional help, can be a lifesaver. If your insurance covers hospice, a nurse will come two to three times a week to provide training, medical attention and advice. Ours was wonderful, but she was only there an hour or two each visit. In-home care can run $20 to $60 an hour, depending on the type of care you need. At those rates, most people won’t be able to afford more than a few hours a day at best.
Then, there is the bed. It is much more difficult to care for a bedridden person in an ordinary bed. It is easier to rent a hospital bed. It can be delivered to your house and picked up within hours when you no longer need it. It can’t be set up upstairs or far away from a bathroom. Even if the person can’t get out of bed, you’ll need a sink nearby. Alexis set Don up in the dining room, near the kitchen and a downstairs bedroom and bath. If you do something like that, you’ll need to provide some privacy, especially if the dying person needs to use a bedside commode. We put up shoji screens between the dining room and the rest of the house.
You will need handy shelves for supplies: towels, diapers if necessary, cleaning products, body care products and medicine. You’ll need space for whatever equipment is necessary, like an oxygen machine, walker, IV pole if one is required, and you’ll need to leave enough space for everyone to move easily around the bed. If there are children (we had two in residence and many that visited) you’ll want to be sure that there’s a way to enter or exit the house without them accidently knocking things over or appearing unexpectedly in the middle of a procedure.
The caregiver will need respite—a chance to clear one’s head and get away, for a few hours, or even a few days. If the dying person’s stay at home will be a long one. Many hospices provide volunteers who can help. The caregiver will also need time to be alone with the dying person. It’s easy to get so wrapped up in meeting physical needs, that caregivers don’t end up spending much quiet time with the dying person, just talking or sitting together, as Joy Johnson discovered when she tried to take care of her mother alone.
And, of course, there will be company. We underestimated the number of people that might come by to pay their respects. Find a way to let people know when it’s okay to come and when it’s not. Decide how much entertaining you’re willing to do. It’s not just the food and drink, it’s the dishwashing, and the picking up. It’s the fact that many visitors fall apart during the experience, and you may have to deal with their grief. This was especially true for Alexis and Don because he was only 47 and the children were only 10 and 6.
Distressing changes can emerge in the dying person. Dying people can become disoriented and confused. They can forget where they are and become restless and agitated. Often, they talk about going home or going on a trip. Don repeatedly told us that he needed to go to Oregon. One night, when Alexis and I had been up late and he asked for his keys and wallet, we put them in his bed, grabbed the rails and gently rocked the bed, turned on the radio and pretended we were all on a car trip to Oregon. That night, Alexis crawled into his bed and spent a last night with him “on the road.” Don’t forget to be playful. It relieves so much stress.
Many people feel the need for spiritual support when they’re dying or caring for someone who is, even though they don’t have any religious affiliation. Hospices sometimes offer a spiritual counselor, and there are religious organizations that will help. Alexis found a group of nuns who were dedicated to sitting with the dying. There are lots of books and online resources, and, in many cities, there is an organization called Threshold Choir. They will send a group of singers to your home to fill it with uplifting and inspiring a cappella music.
Despite all of this physical, emotional, and spiritual work, dying at home, or caring for someone who is dying at home, can be worth the effort. Research has shown that, when a loved one dies in the hospital, family members are five times more likely to suffer from post-traumatic stress than when a person dies at home. It’s comforting to be able to see a loved one who is dying whenever you want to, even in the middle of the night. It’s good to know what is going on. It helps to know that you’ve done what you can to grant a dying person their wish to die at home. It makes you feel useful, and sometimes, that makes all the difference.