CARING FOR A LOVED ONE BEGINS WITH CARING FOR YOURSELF

To help prepare you for this difficult, honorable and rewarding work, there are several things you can do to become a confident and capable caregiver:

• Identify yourself as the primary source of support.
• Ask your loved one about any wishes he/she has regarding his/her care.
• Assess what your loved one needs to be safe, cared for, and have a good quality of life; if needed, seek professional assistance in making this assessment.
• Get more informed. Read anything you can on hospice and talk with your loved one’s physician.
• Convene family and friends to discuss what is needed and how to allocate resources.
• Use positive communication tools to create a plan with your support network.
• If possible, agree on a plan of action and divide responsibilities.
• Be realistic about your limitations and those of your family members.
• Exercise and manage your health. Inadequate health regimes become most apparent during stressful times, You can’t help your loved one if you aren’t well.
• Designate someone to be available in case of an emergency.
• Know the best person to call when you feel the need to talk about what you’re going through.
• Identify activities or people who make you feel relaxed and happy.
• You will spend most of your days indoors. Make a point of getting outside, sitting in the sun, and taking in the outdoors.
• Finally, remember to spend loving moments with your loved one. This time will pass, and you will miss it. 

CREATING THE RIGHT PLACE FOR YOUR LOVED ONE

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 in the bedroom. The goal is comfort for the patient and accessibility for the caregiver. Remember, this is a temporary location. Be prepared, as your loved one’s needs may shift over time.

SLEEPING ARRANGEMENTS

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, though, 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 help 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. 

DEALING WITH YOUR LOVED ONE’S PHYSICAL AND EMOTIONAL CHANGES

As a caregiver, you need to be prepared for the emotional, physical and spiritual changes that can occur at the end of life. To help minimize your stress and be supportive of your loved one, the following provides some practical advice to help you deal with these changes. 

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 books aloud or listening to audio books
• Talking about family plans and activities
• Including patients 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 patient’s arms and legs as long as this movement does not cause pain. Because it provides a window to the outside world, hospice patients often enjoy watching television, even if they never enjoyed it before. 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.

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 a hospice patient to know that families and loved ones have a need to provide care. The process of caregiving 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 caregiving 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