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Caregiver / Patient Tips

What to Do if You're the Caregiver

As the aging population increases, it is estimated that millions of people will be diagnosed with a terminal illness. Therefore, the number of caregivers providing assistance to those receiving hospice care is also expected to increase. Often times, family members do not recognize themselves as a “caregiver.” However, a caregiver is anyone who provides help to an ill spouse, partner, child, relative, or friend.

Being a caregiver for someone who is receiving hospice care can have many rewards. It can also involve stressors that may have you uncertain about what or how you are supposed to do something. The team at HOPE Healthcare and Hospice will train you on many caregiving matters; however, they are available and can be reached 24 hours a day, seven days a week to help you navigate many of those stressors.

We hope the tips below bring you some comfort and clarity as a caregiver.

Avoiding Skin Breakdown

Our skin is the largest organ in our body and is always at risk of injury or breakdown. Older adults are at a higher risk because of the skins aging process. As skin ages, circulation is reduced due to the junction between the epidermis and dermis thinning and flattening. If the layers of skin rub together or the skin remains, stationary tissue damage can occur, causing wounds. Notify your hospice nurse if you suspect a problem with skin breakdown.

Causes of skin breakdown:

  • RImmobility
  • RPoor Nutrition
  • RBladder and Bowel Incontinence
  • RMedications
  • RHydration
  • RImpaired mental status
  • RLoss of sensation

How to Maintain Skin Integrity:

  • RMoisturize dry skin a minimum of twice daily.
  • RAvoid hot water during bathing; this will increase dry, cracked skin.
  • RProtect skin with a moisture lotion or barrier.
  • RKeep the head of the bed flat or below 30 degrees if tolerated.
  • RUse a mechanical lift for moving bariatric patients.
  • RUse draw sheets to pull up, transfer, and position the patient. DO NOT drag.
  • REncourage a well-balanced diet and fluids.

Changes In Breathing

A patient’s breathing can change from a regular rate and rhythm to several rapid breaths followed by a period of not breathing when transitioning to the end of life. When patients are sleeping, their breathing patterns can vary; however, they may seem better when they are awake and alert. Patients may often accumulate the body’s fluid in their throat, causing them to begin to cough and/or have noisy breathing. Oxygen is most commonly administered in the nose by tubes or a mask. When trouble breathing gets worse, administering a higher rate of oxygen may not be helpful as the patient’s ability to move air diminishes. As their breathing pattern begins to change often, caregivers become alarmed. However, breathing changes does not mean the patient is suffering or in distress.

Signs of Breathing patterns:

  • RShallow or irregular breathing (fewer than 8 breaths per minute.)
  • RApnea (periods of no breathing with 5 to 30 seconds or longer between breaths.)
  • RPanting type breaths (breathing rate above 25 breaths per minute.)

Non-Medical Interventions You can do NOW:

  • RElevate the head of the bed.
  • RPosition the person on their side to help clear any secretions that are causing noisy breathing.
  • RAvoid suctioning. It may help reduce the distressing sound for a little while but does not relieve the cause of the symptom and can increase irritation that adds to congestion. The suctioning procedure itself may cause discomfort to the dying person.
  • RUse a dampened cloth or gauze to gently clean the inside and outside of the mouth of the sticky secretions that can accumulate. You can also use a moist sponge swab.
  • RAsk your care team for their suggestions. Medication may help dry up the moisture that causes noisy breathing but can leave other areas like the mouth, nose, and eyes dry.
  • RPlay soft music.
  • RGently touch the person and reassure them that you are close.
  • RCool the patient’s room and ensure they are wearing lightweight clothing.
  • ROpen a window to provide a breeze and fresh air.
  • RYour hospice team is available to answer your questions, provide comforting care and support during this time.


Constipation is a decrease in the frequency of passage of well-formed stools and is often characterized as stools that are hard, small, and difficult to pass. Patients near the end of life frequently suffer from Constipation. Cancer patients may have the highest experience with Constipation at some point during their disease. Constipation affects a patient’s quality of life and causes physical, social, and psychological distress, impacting their caregivers.

Symptoms of Constipation:

  • RBloating
  • RAbdominal Distention
  • RIncreased Gas
  • ROozing Liquid Stool
  • RRectal Pain or Pressure
  • RRectal Pain with BM
  • RInability to Pass Stool

Medications that cause Constipation:

  • RMorphine
  • ROxycodone
  • RPhenergan
  • RPaxil
  • RLevodopa
  • RIron Supplements

Management for Constipation:

  • RAdequate fluid intake
  • RPhysical Activity
  • RLimit alcohol and sodas
  • REat high fiber foods, as tolerated (bran flakes, raspberries, apples, peas, beans, broccoli)
  • RTake a laxative or stool softener, as instructed by your hospice nurse or doctor.
It can be helpful to keep track of your bowel movements. (size/type)


Delirium is a sudden change in mental status caused by many factors such as acute illness, surgery, and medications. Delirium can start to happen in just a few hours. It can come and go, and symptoms can change quickly.

Common signs of Delirium include:

  • RConfusion
  • RFrequent mood swings
  • RMemory loss, including forgetting recent events or family members’ names.
  • RSudden changes in personality or emotional state.
  • RDecreased concentration or attention.
  • RHallucinations (seeing or hearing things that are not there).
  • RPeriods of alertness that come and go throughout the day.
  • RSlower movements or unusually restless movements.
  • RInsomnia and change in usual sleep patterns.
  • RChanges in speech, such as saying things that do not make sense.

How to help manage Delirium:

Delirium can happen as their disease advances. However, your hospice nurse can discuss ways to manage the symptoms and make your loved one more comfortable.

  • RStay with the older person as much as possible.
  • RKeep the patient safe.
  • ROffer simple choices.
  • RMaintain a routine.
  • RHelp the older person remember where they are.
  • RMake the person’s surroundings feel familiar.
  • RDo not argue with the patient if they are confused.
  • REncourage physical activity, games, and conversation.
  • RNotify your hospice nurse of any medications changes.

Eating & Drinking

When a patient with a terminal illness is near death, their body and behavior will go through several different changes. As a caregiver witnessing these changes can cause distress for you and your family members; however, these changes may not necessarily mean the patient is uncomfortable.

Recognizing these changes may help you cope and understand as your loved one’s journey comes to an end.

As the end nears, the patient will begin to want less food and water, which is a natural pattern, and it is okay not to expect them to eat or drink as much as they use to. Attempting to get a patient near end-of-life to eat or drink when they no longer want to may cause them anxiety, and they may only do it to please you.

When a patient begins the dying process, they will stop eating or drinking altogether, which is the body’s way of preparing itself for death. They do not experience hunger or thirst in the same way as they did when they were healthy. Eating and drinking at the end of life will not change or cure the patient’s disease.

Artificial nutrition and hydration (ANH), like tube feedings and intravenous fluids, were initially developed to provide short-term support for acutely ill patients.

However, researchers have found that ANH often leads to complications for patients near the end of life.

Remember, there are other ways that you can show your love and support, such as:

  • RIce chips to their lips will help with dehydration.
  • RApply lip balm to their lips.
  • RLotion their hands and feet.
  • RPlay soft music
  • RReading
  • RCalm and quiet environment.

Fall Prevention

The fear of falling becomes more common with people as they age; therefore, it is essential to think about home safety. More than one in three people age 65 years or older fall each year. Often as a patient’s illness progress, they become weaker and/or dizzy as they try to get up. Below are some causes and risk factors for falls, steps to prevent falling, and what you can do if you fall.

Causes and Risk Factors for Falls:

  • REyesight
  • RHearing
  • RDiabetes
  • RHeart Disease
  • RProblems with your thyroid, nerves, feet, or blood vessels.
  • RMedications
  • RConfusion
  • RWet or cluttered floors.
  • RPets can often get under foot and trip you up.

Steps to Prevent Falls:

  • RUse lights to guide you in the dark.
  • RKeep floors clean, dry, and decluttered.
  • RCheck medication side effects.
  • RKeep glasses, phones, medication, and remotes, in reaching distance.
  • RStand up slowly.
  • RWear non-skid socks and low/flat shoes that fit.
  • RUse assistive devices (i.e. handrails, grab bars, canes, walker, and wheelchair).
  • RAccept help when you are tired, weak, or sleepy.

What to Do If You Fall:

  • RTake several deep breaths to relax.
  • RDecide if you are hurt before getting up.
  • RIf you can safely get up, roll onto your side.
  • RSlowly get up on your hands and knees and crawl to a sturdy chair.
  • RPut your hands on the chair seat and slide one foot forward to the floor. Keep the other leg bent, so the knee is on the floor. From this kneeling position, slowly rise and turn your body to sit in the chair.
  • RIf you are hurt or cannot get up, ask someone for help or call 911. If you are alone, try to get into a comfortable position and wait for help to arrive.


When a patient is on HOPE Healthcare and Hospice services, our number one priority is managing the patient’s symptoms and keeping them comfortable. One of the many ways to manage pain and shortness of breath throughout a patient’s illness or at the end of life is with a medication known as Roxanol TM.

Roxanol TM plays an essential role in decreasing the patient’s fear and anxiety by dilating the bronchioles in the lungs, increasing the patient’s oxygen capacity, and breathing with more ease.

Roxanol TM is a short-acting medication, which can be swallowed or placed under the tongue or inside the cheek. It will take effect approximately 15 minutes after it is administered and should be taken with food or beverages. The HOPE Healthcare and Hospice team will work with you and/or your family to manage all of your comfort needs.

Side Effects May Include:

  • RConstipation
  • RNausea, Vomiting, Stomach Pain
  • RDizziness or lightheadedness
  • RDrowsiness
  • RDry Mouth


Lorazepam is ordered for hospice patients to help reduce emotional or physical symptoms such as: Agitation, Anxiety, Apprehension, Insomnia, Restlessness, and Shortness of Breath.

Lorazepam is given by mouth and can be swallowed or placed under the tongue or inside the cheek. The patient should notice an effect from the medication within 5 to 10 minutes. Lorazepam can cause interactions with other medicines; make sure to tell your doctor about any other medications you’re taking. Most side effects should lessen after 2 to 3 days. If not, contact the HOPE Healthcare and Hospice office. The use of alcohol may worsen your side effects.

Side Effects May Include:

  • RConstipation
  • RDiarrhea
  • RDizziness
  • RDrowsiness
  • RDry Mouth
  • RNausea
  • RTiredness
  • RWeakness

Terminal Agitation

At the end stage of life, restlessness or agitation are common and are defined as agitated delirium with cognitive impairment. The main symptoms are twitching or jerking, agitation, and irritability. Some patients may also experience hallucinations, paranoia, confusion, and disorientation.

If a patient is experiencing these symptoms, it can be very distressing for patients and their families. When managing a patient with terminal agitation, the HOPE Healthcare and Hospice nurse will always rule out any underlying causes and provide the appropriate treatment.

How to Maintain A Safe Environment:

  • RKeep the bed low and consider side rails.
  • RRemove clutter and obstacles to prevent falls.
  • RRemove rugs or use non-skid rugs.
  • RKeep items close, eliminating reaching.
  • RConsider bed alarm or room monitor.

How to Keep the Patient Calm

  • RTalk quietly.
  • RReaffirm that they are not alone.
  • RCreate a calm and peaceful atmosphere.
  • RAvoid bright lights.
  • RPlay soft music.
  • RAvoid sudden, loud noises.

Turning A Patient

Bedbound patients should be turned every two hours, which keeps blood flowing to their skin, prevents bedsores, and will keep them comfortable during the day and night. Turning a patient is also an excellent time to check their skin for redness and sores. If pain is an issue, considering giving the patient pain medication 30 minutes before turning. The number ONE rule of turning a bedbound patient is never to lift more than you can handle.

Tip 1

Prepare the Patient:
  • RExplain what is going to happen and encourage them to help if possible.
  • RMove the patient to the center of the bed, ensuring the rails are up on the side you are turning the patient towards. The patient’s bottom arm should be stretched towards you.
  • RPlace the patient’s top arm across their chest. Cross the patient’s upper ankle over the bottom ankle.

Tip 2

Create a base of support:
  • RStand with your feet shoulder-width apart and place one foot a half-step ahead of the other. Use your legs, not your back, when lifting.

Tip 3

Steps for the caregiver:
  • RRaise the bed to a level that reduces back strain for you and make the bed flat (lowering the head and/or foot of the bed).
  • RGet as close to the patient as you can.
  • RPlace one of your hands on the patient’s shoulder and your other hand on their hip.
  • RShift your weight to your front foot as you gently pull the patient’s shoulder toward you. Then shift your weight to your back foot as you gently pull their hip toward you. Ensure the patient’s ankles, knees, and elbows are not resting on top of each other.
  • RMake sure their head and neck are in line with their spine.
  • RReturn the bed to a comfortable position with the side rails up. Use pillows as needed.
  • RIn two hours, return patient to back, and repeat with the other side at next turn.