There is no doubt the end of life for a loved one is a difficult process for both the patient and the caregiver. As the caregiver you might have many questions on what to expect throughout the hospice journey. Your hospice staff will be a great reference for you, but here are some helpful guidelines. Some changes you might notice will be:
For our entire life it has been taught that we need to eat three meals a day. Food gives us energy to do what is needed to stay alive. At the end of life, energy to stay alive is no longer needed. Therefore the body may not want to consume. Foods may not taste like they did before. This is normal during the dying process. One of the most frequent questions asked is if families should begin IV therapy or tube feedings. This is generally not a comfortable measure for your loved one. As the body begins to shut down, increasing fluids or foods cannot easily be tolerated and can cause greater harm. Use the suggestions below for your loved one and try to share your meals 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 a day of light foods are tolerated more easily.
- Serve small portions on the plate so the patient does not feel overwhelmed or a sense of failure because he/she cannot eat all the food.
- Alter mealtimes to when the patient is pain free and has the most energy: mornings, mid-afternoons, and after pain medication is administered.
- Blend in a blender meals for patients who have difficulty swallowing.
- Do not force food at any time.
- Liquid/soft foods may be best when patients have nausea or pain: 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, and 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.
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. There is research to suggest that patients can hear, even near death. Let the patient know you are there and that you love him or her.
As a patient becomes bed-bound, the nurse may discuss the need for a hospital bed. A bedbound patient will need to be repositioned frequently to decrease the risk for skin breakdown. Your nurse may help you make a turn sheet or use proper body mechanics to aid in moving the patient. Remember, our efforts are to increase their comfort and to keep you from harm.
This will be a difficult time. Now that you are providing for all the patient’s physical needs, you may begin to become physically tired. Along with the physical fatigue, you are also at a point where the emotional distress can become overwhelming. You may not want to leave the room for fear that your loved one will die and you will not be there.
It is imperative that you care for yourself at this time. You must take time away. Let others help you. Create a support system that may include friends, family, church or community service groups, or paid caregivers. The hospice staff can help you identify available resources.
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. The 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. 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 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 okay to tell your loved one that they may go with them. If visions frighten the patient, explain that it is okay and that this is normal. If it is distressing the patient, let your hospice nurse know. The confusion or visions could also be frightening to you, 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 that have died. It is sad to say goodbye, but now may be the time.
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 cause you, the caregiver, and distress. 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 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.
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;” “I’m sorry for__________;” or tell them you will be okay here without them.
It is okay to cry. Your loved one knows you are sad. If there is someone that can be with you at this time, 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 you. Your hospice nurse will be there soon.