Caring for your loved one can be challenging as well as rewarding. Whether at home, in a nursing facility, or in a hospice unit, learning the basics of caring for your loved one can ensure that he or she receives the best possible care.
Remember that every illness progresses differently and that every individual experiences the illness in a unique way. Your hospice team will be there to guide and support you.
As your loved one weakens, he or she may require help with positioning in bed. Many patients tend to slide toward the foot of the bed and need to be helped back toward the head of the bed. Remaining slumped toward the bottom of the bed is uncomfortable and can interfere with breathing. It also causes unnecessary pressure on the base of the spine that can result in skin breakdown (bedsores).
When your loved one experiences difficulty turning or shifting in bed, it is important to avoid pulling or pushing her without first lifting her body. Dragging can cause injury to the skin. The bed should be as flat as possible when the patient is moved. The electric controls on a hospital bed will allow you to lower the head of the bed briefly while this task is performed.
As the end of life approaches, it may not be appropriate to turn your loved one in bed if it is disturbing or painful. There is no need to be concerned about preventing bedsores at this time. Maintaining comfort is of utmost importance; therefore, whatever is done should be based upon your loved one’s comfort.
Before attempting to move or lift a patient, evaluate the weight of the person being moved and that person’s ability to help him or herself in the move. Do not attempt to lift someone if you have any doubts about your ability to do so safely.
If you are confident you can provide this support safely:
Assist the patient with personal care as needed while encouraging as much independence as possible. It is important to keep the skin clean, but a daily bath may be too exhausting and can cause overly dry skin. The hospice staff generally assists with bathing one to two times weekly or as needed. They can instruct you in providing a bed bath if desired.
Offer mouth care several times daily. Teeth may be brushed with a soft toothbrush and toothpaste and rinsed with water. Special swabs may be used when brushing is not feasible. Report any mouth sores or dryness to your hospice nurse. A water-based lubricant can be used on the lips and nostrils.
There are numerous medications and methods to control pain. Your hospice nurse will work with you and your physician to maintain comfort.
Determining the level of pain can be difficult. Pain is defined as “whatever the person experiencing it says it is.” Hospice uses the visual Wong-Baker scale to rate pain. It has pictures of faces ranging from smiling to crying to rate pain and assigns a number value to each. Your loved one will be asked to rate pain on a regular basis.
With pain medication, addiction is not a concern. Side effects, such as drowsiness, are common but are usually transient and diminish within a few days. Pain medications are often taken on a scheduled basis rather than “as needed” to establish a level of medication in the bloodstream. Medication is given for “breakthrough” pain as needed.
In general, medications taken by mouth are as effective as injections. Medications can also be given under the tongue (sublingually) or by patch (transdermally). Hospice patients can also receive their pain medication by a continuous infusion just beneath the skin using a tiny catheter (“sub-q disk”) and a “CADD” pump.
Pain can be affected and magnified by anxiety, stress and fear. Frustration, fatigue and depression may also increase pain. Relaxation, imagery or distraction may help ease pain and discomfort. Similarly, repositioning and gentle massage may relieve tension and add to comfort.
Toward the end of your loved one's life, your goal remains simple: provide as much comfort and love as possible. Here are some additional tips for doing just that:
Changes in appetite, nausea and vomiting, or other difficulties in elimination might occur at times. Your loved one may also experience discomfort or shortness of breath. Changes in emotions or mental status, such as restlessness or confusion, can take place as well. While some of these occurrences may be a "normal" part of the disease progression, please contact the hospice staff at any time. Your hospice team members are always available to help maintain comfort and dignity for you and your loved one during these challenging times. You are never alone.
Most hospice patients eventually lose bowel and/or bladder control because of either the disease or a decrease in level of consciousness. This can be depressing or humiliating to your loved ones. Maintaining privacy is important when providing intimate care.
Before a patient becomes incontinent, a bedpan or urinal might become necessary. Ensuring that the bedpan or urinal is regularly offered can be very effective in maintaining continence when your loved one is still able to control the bowel or bladder. If the patient is not confined to bed, a bedside commode can be used.
If incontinence occurs regularly, your loved one may need incontinence pads or briefs. The hospice staff will help you to obtain the needed supplies.
Some patients become so embarrassed or humiliated by incontinence that they decrease their intake of food and fluids. They may also refuse laxatives that are necessary to avoid constipation. In these cases, constipation may become severe and cause abdominal pain and cramping or bowel obstruction. Constipation is prevented with a bowel regimen.
Overall, it is important to communicate your love and understanding, and to maintain privacy.