Most patients served by Hospice of West Alabama (HOWA) choose to remain in their own homes to be cared for by a family member or other loved ones. HOWA provides support to these primary caregivers who, generally, have never before cared for a terminally ill person. Often, caregivers such as the husband or wife of the patient are uncertain they can do a good job of providing care. HOWA has a support system in place that help them become comfortable and competent in this unfamiliar role. If you are caring for an ill loved one at home, below is information that may help.
Creating a Place for Someone Who is Ill
When you choose hospice care, you may have some new and special needs. Previous living and sleeping arrangements may need to be modified to make care easier and more comfortable for everyone. The “place” for the person receiving hospice care may be anywhere in the home: the living room in a reclining chair, the family room in a hospital bed or the bedroom with its familiar surroundings. The important point to remember is that it should be comfortable for the patient and accessible for the caregiver.
Remember, this is a temporary location. Needs may change over time. Consider the comfort of the person who is ill and the rest of the family. Providing care in the home for someone whose physical or mental faculties are declining creates new and special safety needs. A phone near your loved one’s bed would enable him or her to summon assistance, if necessary.
Physical and Mental Activity
Loss of control is one of the biggest frustrations of illness. Physical and mental activity promotes independence, one of the goals of hospice care. Your loved one may desire to get out of bed, if possible, and walk or sit in a chair. Many patients remain alert and mentally active, even if physical activity is limited. Here are a few ways they can actively enjoy themselves:
- Play cards or board games
- Have someone read to them or listen to books on tape/CD
- Talk to your loved one about family plans and activities
- Include him or her in discussions and in decision-making as much as possible
Even if your loved one is bed-bound, you can exercise the arms and legs as long as this movement does not cause pain. Your nurse or home health aide can also show you how to do these exercises. People who are limited in physical activity often enjoy watching television, even if they never enjoyed it before, because it is a link to the outside world. They sometimes want to watch when others do not. Devices are available that allow a patient to listen to television programs through headphones without disturbing the rest of the family. Check your local electronics store for information. The person who is ill may also enjoy a small tape or CD player for music and audio books. With headphones, one can adjust the volume to a suitable level. A phone within reach is a wonderful way to keep in touch. If there is no outlet nearby, use a cordless or cellular phone.
If your loved one has trouble moving but wants to get out of bed, have another person help you with the transfer to a chair. Do not do it alone. Your nurse or home health aide will show you how to lift and move.
Preparing Your Loved One’s Bed
The person who is ill 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. Here are some tips and suggestions:
- Lift sheets make it easier to turn, reposition, and move people who are bed-bound. 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 be used to turn the person in bed. It should be changed daily or more often, if necessary.
- Have your nurse or home health aide show you how to use pillows and blankets to position your loved one securely and comfortably.
- A waterproof covering for the mattress can ease cleanup when a patient experiences diarrhea, vomiting, trouble controlling urine or profuse perspiration.
- Disposable bed pads, available from hospice or a drug store, can be placed under a person in bed, making basic care easier.
- Side rails may be raised for safety to prevent falls.
- Padding side rails with a towel or blanket can assist during turning and daily care and can prevent injury in case of seizures.
- Your nurse or home health aide can show you ways of changing the bed that will ease the caregiver’s task and increase your loved one’s comfort.
- 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.
Having a Relationship With Your Loved One
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 assess what is happening.
A Hospice Physician’s Experience
The question is asked: “If your wife/husband/child/best friend were the patient, would you consider it a burden to take care of them?” Patients respond uniformly to the previous question with an emphatic “no.” When the patient says, “no, of course not,” it allows the caregiver and family to tell the patient that they do not consider it a burden, either. Also, it is important for patients to know that families need to provide care. It helps them cope. It helps them prepare for death, separation and saying goodbye. It is an act of love and an honor to care for loved ones. It is equally an act of love and an honor to allow others to care for us. You may find it helpful to:
- Emphasize the gifts being shared by each person, caregiver and patient
- 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
- Express concerns to your social worker or spiritual counselor to help arrange support