We understand that patients and families dealing with potential end-of-life issues can be overwhelmed with medical and personal decisions. They are often reluctant to start the discussion about hospice.
Asking a patient about their goals for medical care is a productive first step in end-of-life discussions. When families open up to their doctor, they can focus on getting care that matches their wishes and leads to better quality of life.
According to a daughter of a hospice patient, “It’s important for us to know as much as possible about options. No one knows exactly what's going to happen when, but breaking the ice about hospice helps us be better prepared.”
It is unrealistic to assume that caregivers have all the answers or will be able to handle every situation. Having 24/7 support from hospice nurses can ease anxiety.
“That was the best part for me. I never had to guess if what I was doing was right. I could just call the nurse. There was always someone available to answer my questions,” explains the wife of a hospice patient.
Hospice services are designed to meet the needs of patients and their families and friends. “On top of everything else, my family was being more hurtful than helpful,” said the daughter of a hospice patient. “None of us were in agreement about what to do for Dad, and we were all divided rather than coming together to help. The hospice social worker arranged for us to sit down with Dad and the hospice team for a family meeting in order to set up a plan for everyone to follow.”
While some families are used to having people in and out of their homes on a regular basis, others may be unaccustomed to visitors. Meeting new nurses, social workers, home health aides, chaplains and volunteers can be overwhelming, especially in the first weeks of receiving hospice care. Additionally, hospice professionals may order new equipment and supplies to help provide care for the hospice patient. This can mean quite a few changes in a short period of time. It is important for the caregivers and family to adjust. It will become easier after a couple of weeks when family members get to know the hospice staff.
When friends and family members learn you're caring for someone on hospice, they may offer to help. The simple acts of running errands, making meals, or just talking can reduce anxiety.
Some caregivers feel overwhelmed with offers of assistance, while others feel like they are all alone in caring for the hospice patient. A daughter of a hospice patient recalls how her family members were reluctant to offer help, but were glad to help when asked: “At first I just waited, hoping that someone would offer to do something to help, but the offers never came. So finally I just started asking people to do specific things. Turns out, they were happy to help, they just didn’t know what to do.”
Non-medical volunteers are important members of the hospice team, and caregivers who used their services reported that they had been quite helpful. Volunteers help caregivers in a variety of ways, including socializing with hospice patients, helping with non-medical tasks around the house, or simply sitting with patients while caregivers run errands or take much needed breaks.
“I wasn’t sure how my husband would react to a volunteer, and it was kind of awkward initially,” the wife of a patient said, “But soon it was obvious that he looked forward to the volunteer’s visits. They played cards, watched sports, listened to music …I loved my husband, and I wanted to be there for him, but I came to realize that we were driving each other crazy being around each other 24 hours a day! The volunteer’s visits were an important break for both of us.”
While caregivers are busy taking care of others, it is important that they take care of themselves as well. But doing this is often easier said than done, especially when someone is as busy, as caregivers tend to be. Advise caretakers that they can benefit greatly from small breaks, such as taking a long bath, phoning a friend, working in the garden or taking a walk. Some caregivers may prefer to stick close to home. In this case suggest they use a two-way home monitor.
Many caregivers have reported not getting sufficient sleep. If a caregiver is unable to sleep well at night, suggest they arrange for someone to come over during the day so the caregiver can take a nap. If a caregiver has to be up several times during the night to give medications and care, they should talk to their hospice nurse. If the caregiver isn’t sleeping well, chances are the hospice patient isn’t either. It’s possible that changes need to be made to the care plan.
Sometimes staying involved in activities is helpful and serves as a break from caregiving responsibilities; however, caregivers may need to take a leave of absence from certain tasks or say no to certain things.
“I felt really guilty when I asked to be replaced as the Sunday School instructor for the senior group at church, but it turned out to be the best decision that I could have made,” said one caregiver. “Our pastor arranged for a couple to take over while I was caring for my husband, and they were able to give the group the attention and energy it needed.”
Just because someone is nearing the end of life doesn’t mean that it is impossible or inappropriate to experience happiness.
At Compassus, we believe that sharing with caregivers and family members on what to expect will make the hospice experience more comfortable for everyone. To that end, we developed Along the Final Journey: A Caregiver’s Guide. This guide offers a compassionate resource to the family of a hospice patient.