Hospice in Homes
Patients most often choose to be looked after by a family member or loved one in their own home. Because these primary caregivers have often never cared for someone with a terminal illness, we offer a variety of solutions that can help you become more capable with this unfamiliar role.
Creating the right place
With hospice care, previous living and sleeping arrangements may need to be modified to make care easier and more comfortable for everyone. The care setting can be anywhere in the home: the living room in a reclining chair, the family room in a hospital bed or simply the bedroom. The goal is comfort for the patient and accessibility for the caregiver. Remember, this is a temporary location. Be prepared as needs may shift over time.
Physical and mental activity
Loss of control is one of the biggest frustrations that comes with being ill; however, with limited activity, many patients can remain mentally alert and active. Consider these activities:
- Playing cards or board games
- Reading to them or listening to audio books
- Talking about family plans and activities
- Including them in discussions and decision-making when possible
If your loved one has trouble moving but wants to get out of bed, have someone help you with the transfer to a chair. Your hospice nurse can show you how. Even if your loved one is bed-bound, you can exercise the arms and legs as long as this movement does not cause pain. Hospice patients often enjoy watching television, even if they never enjoyed it before, because it provides a window to the outside world. Offer your loved one headphones for times when they want to enjoy TV or videos without disrupting others. Also be sure a phone is within reach, so the patient can always remain in touch.
The patient and the caregiver should choose the most comfortable place to sleep. The hospice team will not insist that you change to a hospital bed but, at some point, a special bed may become more practical.
Below are some ways to make sleeping more comfortable:
- A lift sheet can make it easier to turn, reposition and move patients. Fold a flat sheet in half and place it crosswise on the bed between the person’s shoulders and hips. Using the lift sheet, one or two people can move the patient up in bed without pulling on arms or shoulders. A lift sheet can also be used to turn the person in bed. It should be changed daily or as needed.
- Have your nurse or hospice health aide show you how to use pillows and blankets to position your loved one securely and comfortably.
- A waterproof mattress covering can ease cleanup when a patient experiences diarrhea, vomiting, trouble controlling urine or profuse perspiration.
- Blue pads, available from a drug store, can be placed under a person in bed, making basic care easier.
- Side rails may be raised to prevent falls.
- Side rails can be padded with a towel or blanket to assist during turning and daily care and prevent injury in case of seizures.
- The simple act of turning a pillow to the fresh, cool side or placing a cool washcloth on a patient’s forehead can give great comfort.
Working through frustrations
People who are ill often believe they are a burden to their loved ones. In frustration, they may become angry and lash out at those who are closest. The impact of this anger on a tired and anxious caregiver can be devastating. As with all anger, remind yourself that stepping back and allowing “breathing space” gives everyone a chance to put things in perspective.
Easing the burden
Because they often feel like a burden, it is important for patients to know that families and loved ones need to provide care. The process helps them to cope with death, separation and saying goodbye. It is an act of love and an honor to care for someone who is terminally ill.
Things to keep in mind:
- Emphasize that care-giving is a privilege, not a burden
- Affirm the anger rather than deny it
- Talk about expressing feelings honestly
- Contact friends, relatives and hospice personnel to gain the support you need to continue to provide care
- Ask your hospice nurse to contact a social worker or spiritual counselor to help arrange support