Caring for a Hospice Patient

Caring for a loved one receiving hospice care can feel overwhelming. As a caregiver, you likely have many questions about what to expect throughout the hospice journey. Our team will be an excellent resource for you, but here are some helpful tips about what to expect. 

It is imperative that you care for yourself at this time. You must take time away and let others help you. Create a support system that may include friends, family, church or community service groups, or paid caregivers. The Covenant Hospice staff can help you identify available resources.

Eating Habits

All our lives, we’ve been taught that we need to eat three meals a day. Food gives us the energy for daily activities and the energy for our bodies to stay alive. At the end of life, that energy is no longer needed. Foods may not taste like they did earlier in life, and the body may not want to consume much food. This is normal during the end-of-life process.

One of the most frequent questions families ask is whether IV therapy or tube feedings should be started. This is generally not  comfortable for your loved one. As the body begins to shut down, increasing fluids or foods cannot be tolerated easily and can cause greater harm than help. Below are some suggestions that may be helpful. Also, try to share mealtime with your loved one even if you are not eating the same things.

Food Suggestions and Helpful Hints:

• Offer small, frequent meals throughout the day rather than a three-meals-a-day routine. Three to five meals of light foods are tolerated more easily.
• Serve small portions on the plate so the patient does not feel overwhelmed or feel a sense of failure because they cannot eat all the food.
• Schedule mealtimes for when the patient is pain-free and has the most energy, such as mornings, mid-afternoons, and after pain medication is administered.
• Use a blender to refine foods for patients who have difficulty swallowing.
• Do not force food at any time.
• Liquid/soft foods may be best if patients have nausea or pain. Offer soups, shakes, yogurt, ice cream, cool drinks, etc.
• Flavored/unflavored ice chips relieve dryness and discomfort when the patient no longer wants to eat or drink.
• Baby food can sometimes satisfy needs for soft, bland foods. They can be made appetizing with spices or seasonings.
• An infant cup with a lid on top allows patients to drink by themselves without worrying about spilling.
• Protein supplements bought over-the-counter (such as Ensure) are often tolerated well.
• Instant breakfast items can easily serve as a meal.
• Cooler foods are often tolerated better when a person is nauseated.

Sleeping Habits

As the disease progresses and death nears, patients may become weaker. They may progress from being up and about to spending more time during the day in bed. They may rouse briefly, then return to sleep. As the decline continues, they may slip into a state of constant sleep or coma.

Caregivers may sit with their loved one and talk as if they were awake. Research suggests that patients can hear, even near the end of life. Let the patient know you are there, and give them words of comfort during this stage. 

As a patient becomes bed-bound, the nurse may discuss the need for a hospital bed. A bed-bound patient will need to be repositioned frequently to decrease the risk of skin breakdown. Your nurse may help you make a “turn sheet” or use proper body mechanics to aid in moving the patient. These efforts can increase the patient’s comfort while helping you maintain proper body alignment as you move your loved one. 

Incontinence

You may need a home care aide to help you keep the patient clean and dry; however, they will not be there for every diaper change or bed bath. Our hospice staff will help you learn the proper techniques to keep you and the patient from getting hurt.

Usually there is a decrease in urine because the body has started to shut down. Fluid intake may decrease. This is normal and should not alarm you. A catheter is not always necessary and can sometimes be harmful, as it is an invasive procedure and could increase the risk of infections. Also, if the patient is confused, he or she may pull on the catheter and cause injury. If the patient complains of the need to urinate and is unable to void, you should contact the hospice nurse. The nurse will discuss with you whether a catheter is necessary.

Confusion/Visions

Confusion can be caused by many disease processes or from approaching death. Confusion may come and go or seem to increase at different times during the day. The patient may be confused about the time or day, forget things easily, or ask the same question many times. Speak as you normally would. Identify yourself and tell the patient what day and time it is. Tell them where they are. Before you perform any procedure or give any medication, let your loved one know what you are doing. Speak softly, clearly, and truthfully. Answer questions openly and honestly.

Vision-like experiences are common. The patient may speak of seeing people who have died or speak of places they are seeing. Reassure the patient and let them know that you are there. If they are seeing friends or family it is OK to tell your loved one that they may go with them. If visions frighten the patient, explain that they are OK and their visions are normal. If the visions are distressing the patient, let your hospice nurse know.

The confusion or visions may be frightening for you to witness, but more often they are a calming experience for the patient. It can be comforting to know that your loved one will soon be with friends or family who have died. It is sad to say goodbye, but now may be the time.

Breathing Changes

As the decline continues and the heart and lungs begin to fail, the patient may begin to have fluid accumulate in the lungs. This can cause a noisy breathing pattern that may distress you. By this time, the patient may be unconscious, and the fluids may not be causing them discomfort. It is usually more stressful for the caregiver than for the patient. If the patient is awake and the fluid accumulation is distressing, call hospice. Medication to sedate the patient and/or suction may be ordered by your hospice nurse.

As death is near, the breathing pattern may change from a regular pattern. There may be periods of no breathing (apnea). Respiration may become fast, alternating with the periods of apnea. The periods of breathing become shorter and may seem as if the patient is panting. The periods of apnea become longer.

Providing Comfort

At this time, you may want to call family and let them know death is imminent. Remain calm; the transition from this life is almost complete. Sit by your loved one’s side. Hold their hand. Share your thoughts and feelings with them. You may want to say “I love you;” or “I’m sorry for__________;” or tell them you will be OK even if they are no longer here.

It is OK to cry. Your loved one knows you are sad. If there is someone who can be with you, ask them to be with you now. Allow your family and friends to comfort you. As always, if you are unsure of what you should do or if you feel the patient is not comfortable, you can call hospice.

When Death Occurs

When breathing has ceased, call the hospice office at 865-374-0600. The hospice nurse will come to your home at this time. There is no rush. Your loved one is no longer in this life. You may turn off any machines, such as oxygen or infusion pumps. You may want to sit with your loved one or, if this is difficult, you may leave the room. Do what you need to do for yourself. Your hospice nurse will be there soon.

Contact Us for More Information

If you need more information or would like to see what other services Covenant HomeCare and Hospice can offer you during your time of need, please do not hesitate to reach out at 865-374-0600.