Hospice Caregiver
and Patient Tips

What to do when caring for a hospice patient

Caregiver / Patient Tips | HOPE Healthcare and Hospice

What to do if you're the caregiver of a hospice patient

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

Being a caregiver can be rewarding. It can also involve stressors that may make you uncertain about what or how to do something; this can be compounded when the person you are caring for has a terminal diagnosis and is in hospice care. The HOPE Healthcare and Hospice team 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 stressors. 

 

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 skin 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:

  • Immobility
  • Poor Nutrition
  • Bladder and Bowel Incontinence
  • Medications
  • Hydration
  • Impaired Mental Status
  • Loss of Sensation
 
 
 
Download Tips

How To Maintain Skin Integrity: 

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

Changes In Breathing

When transitioning to the end of life, a patient’s breathing can change from a regular rate and rhythm to several rapid breaths, followed by a period of not breathing. When patients sleep, their breathing patterns can vary; however, they may seem better when awake and alert. Patients may often accumulate the body’s fluid in their throat, causing them to begin to cough and 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 do not mean the patient is suffering or in distress. 

Signs Of Breathing Patterns:

  • Shallow or irregular breathing (fewer than eight breaths per minute.)
  • Apnea (periods of no breathing with 5 to 30 seconds or longer between breaths.)
  • Panting-type breaths (breathing rate above 25 breaths per minute.)

Non-Medical Interventions You Can Do Now: 

  • Elevate the head of the bed.
  • Position the person on their side to help clear any secretions causing noisy breathing.
  • Avoid 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.
  • Use 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.
  • Ask 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.
  • Play soft music.
  • Gently touch the person and reassure them that you are close.
  • Cool the patient’s room and ensure they are wearing lightweight clothing.
  • Open a window to provide a breeze and fresh air.
  • Your hospice team is available to answer your questions and provide comforting care and support during this time. 
Download Tips
 

Constipation

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:

  • Bloating
  • Abdominal Distention
  • Increased Gas
  • Oozing Liquid Stool
  • Rectal Pain or Pressure
  • Rectal Pain with BM
  • Inability to Pass Stool

Medicines That Cause Constipation:

  • Morphine
  • Oxycodone
  • Phenergan
  • Paxil
  • Levodopa
  • Iron Supplements
 

Management For Constipation:

  • Adequate fluid intake
  • Physical Activity
  • Limit alcohol and sodas
  • Eat high-fiber foods, as tolerated (bran flakes, raspberries, apples, peas, beans, broccoli)
  • Take 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).

Download Tips

 

 

Delirium

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:

  • Confusion
  • Frequent mood swings
  • Memory loss, including forgetting recent events or family members’ names.
  • Sudden changes in personality or emotional state.
  • Decreased concentration or attention.
  • Hallucinations (seeing or hearing things that are not there).
  • Periods of alertness that come and go throughout the day.
  • Slower movements or unusually restless movements.
  • Insomnia and change in usual sleep patterns.
  • Changes in speech, such as saying things that do not make sense.
 
 Download Tips
 

How To Help Manage Delirium:

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

  • Stay with the older person as much as possible.
  • Keep the patient safe.
  • Offer simple choices.
  • Maintain a routine.
  • Help older people remember where they are.
  • Make the person’s surroundings feel familiar.
  • Do not argue with the patient if they are confused.
  • Encourage physical activity, games, and conversation.
  • Notify your hospice nurse of any medication changes.
 

Eating and Drinking

When a patient with a terminal illness is near death, their body and behavior will undergo several 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 progresses.

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 used 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 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:

  • Ice chips to their lips will help with dehydration.
  • Apply lip balm to their lips.
  • Lotion their hands and feet.
  • Play soft music
  • Reading
  • Calm and quiet environment.

Download Tips

 

 

Fall Prevention

As people age, fear of falling becomes more common; therefore, it is essential to think about home safety—more than one in three people aged 65 years or older fall each year. As a patient’s illness progresses, 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:

  • Eyesight
  • Hearing
  • Diabetes
  • Heart Disease
  • Problems with your thyroid, nerves, feet, or blood vessels.
  • Medications
  • Confusion
  • Wet or cluttered floors.
  • Pets can often get underfoot and trip you up.

Steps To Prevent Falls:

  • Use lights to guide you in the dark.
  • Keep floors clean, dry, and decluttered.
  • Check medication side effects.
  • Keep glasses, phones, medication, and remotes within distance.
  • Stand up slowly.
  • Wear non-skid socks and low/flat shoes that fit.
  • Use assistive devices (i.e., handrails, grab bars, canes, walkers, and wheelchairs).
  • Accept help when you are tired, weak, or sleepy.

What To Do If You Fall:

  • Take several deep breaths to relax.
  • Decide if you are hurt before getting up.
  • If you can safely get up, roll onto your side.
  • Slowly get up on your hands and knees and crawl to a sturdy chair.
  • Put 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.
  • If 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.

Download Tips

 

 

Liquid Roxanol TM

When a patient is on HOPE Healthcare and Hospice services, we prioritize managing their 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 more easily.

Roxanol TM is a short-acting medication that 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 your comfort needs.

Side Effects May Include:

  • Constipation
  • Nausea, Vomiting, Stomach Pain
  • Dizziness or lightheadedness
  • Drowsiness
  • Dry Mouth
 
 
 
 

Lorazepam

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; be 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:

  • Constipation
  • Diarrhea
  • Dizziness
  • Drowsiness
  • Dry Mouth
  • Nausea
  • Tiredness
  • Weakness
Download Tips
 
 
 
 

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:

  • Keep the bed low and consider side rails.
  • Remove clutter and obstacles to prevent falls.
  • Remove rugs or use non-skid rugs.
  • Keep items close, eliminating reaching.
  • Consider bed alarm or room monitor.
 
Download Tips
 

How To Keep The Patient Calm:

  • Talk quietly.
  • Reaffirm that they are not alone.
  • Create a calm and peaceful atmosphere.
  • Avoid bright lights.
  • Play soft music.
  • Avoid sudden, loud noises.
 

Turning A Patient

Bedbound patients should be turned every two hours, which keeps blood flowing to their skin, prevents bedsores, and keeps them comfortable day and night. Turning a patient is also an excellent time to check their skin for redness and sores. If pain is an issue, consider 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:

  • Explain what will happen and encourage them to help if possible.
  • Move 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.
  • Place 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:

  • Stand 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 Hospice Caregiver:

  • Raise the bed to a level that reduces back strain for you and makes the bed flat (lowering the head and/or foot of the bed).
  • Get as close to the patient as you can.
  • Place one of your hands on the patient’s shoulder and your other hand on their hip.
  • Shift 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 each other.
  • Make sure their head and neck are in line with their spine.
  • Return the bed to a comfortable position with the side rails up. Use pillows as needed.
  • In two hours, return patient to back, and repeat with the other side at the next turn.

Download Tips

 

 

 

Cancer Resources

When anyone receives a cancer diagnosis, it undoubtedly raises many challenges and concerns. Fortunately, local and national resources are available to assist with many issues. 

What Kind of Help Can Hospice Patients Get?

General Information. Many reputable diagnosis-specific cancer organizations provide reliable, up-to-date information on treatment options, clinical trials, managing side effects, and more.

Emotional Support. A person can feel lonely, scared, or distressed when diagnosed with cancer; being a caregiver to someone with cancer is worrisome. Counseling, support groups, and peer-to-peer networks are some types of support available to help cope with such emotions.

Financial Help. Some organizations and companies help families with medical fees, insurance, and reimbursement issues. Co-payment organizations and patient assistance programs also help individuals with the cost of medications and general expenses related to cancer, such as transportation, childcare, and home care. 

Transportation Assistance. In many communities, transportation services are available to help you. By contacting your local United Way, you'll be able to find out what programs are available in your area.

Housing/Lodging. Some organizations provide free or discounted lodging for families of a patient undergoing treatment. Joe’s House is an online directory of places to stay near hospitals and treatment centers. Visit Joe’s House for more information.

How Do Hospice Patients Connect to These Cancer Resources?

Your team of healthcare providers can offer a wealth of information about your cancer diagnosis and treatment. Hospital social workers and discharge planners are great resources for information on home care, transportation, and childcare. “CancerCare’s” oncology social workers are a team of licensed professionals who counsel people affected by cancer and can help people navigate resources based on individual needs. For more information, visit CancerCare or call 800-813-HOPE (4673).

Parish and Local Government agencies can provide information on Social Security, State Disability, Medicaid, income benefits, and food stamps.

CancerCare is a searchable online financial database and assistance tool for people with cancer. This comprehensive tool features up-to-date contact information and descriptions for many local, regional, and national organizations offering financial help to folks diagnosed with cancer.



 

Additional Resources

Help And Support For Hospice Caregivers

As a caregiver for a parent, spouse, or child with a terminal illness and/or special needs, you may need help at some point. These resources and suggestions can help you find emotional and task support.  

Federal Government Hospice Caregiver Resources

State And Local Hospice Caregiver Resources

  • Finding Local Services - Use the Department of Health and Human Services list to find various government and non-government resources. 
  • ARCH- The National Respite Locator Service helps parents, caregivers, and professionals find respite services that match their specific needs in their state and the local area.
  • Family Caregiver Alliance features information on national, state, and local programs that support and sustain caregivers.
  • Grandfamilies.org is a national resource supporting grandparents and relatives raising children within and outside the child welfare system.
  • OfficeThe of Elderly Affairs is a focal point for Louisiana's senior citizens. It administers a broad range of home and community-based services through a network of Area Agencies on Aging.

Local Hospice Support Resources

Home And Community-Based Services

  • The Office of Aging and Adult Services (OAAS) administers home and community-based long-term care services (HCBS) through various waiver and state plan programs for individuals who are elderly or have disabilities, assisting them to remain in their homes and the community. These HCBS programs intend to provide services and support that are not otherwise available and help an individual stay in or return to the community. These programs do not individually or in combination provide 24-hour-per-day support. Individuals may often need and desire to use other paid and unpaid supports.
  • The Community Choices Waiver (CCW) serves seniors and persons with adult-onset disabilities as an alternative to nursing facility care. Each recipient is provided an acuity-based budget based on a standardized assessment to create an individual service package. The CCW contains many services, including support coordination, nursing, skilled therapy assessments and services, in-home monitoring systems, home modifications and assistive technologies, personal care, home-delivered meals, monitored in-home caregiving, and caregiver respite.
  • The Adult Day Health Care Waiver (ADHC) is a community-based service delivered in an adult day health center that provides supervised care to adults in a supportive and safe setting during part of the day. Services provided by staff at licensed ADHC facilities include personal care assistance, health education, health screening, medication management, and others.
  • The Long-Term Personal Care Services program provides help with activities of daily living for people who qualify for assistance under the program guidelines. This program does not, individually or in combination with other OAAS programs, provide 24-hour-per-day support.
  • Program for All-Inclusive Care for the Elderly (PACE) program coordinates and provides all needed preventive, primary, acute, and long-term care services so that older people can continue living in the community. The emphasis is on enabling senior citizens to remain in their communities while enhancing their quality of life.

Acadiana Municipalities

Counseling and Bereavement Resources

Local Special Grief Contacts

  • Healing House 
    • Counsels with children and families who are grieving the loss of a loved one.
    • 160 South Beadle Rd., Lafayette, LA 70508
    • (337) 324 - 0443 
  • The Family Tree
    • Counsels with children and families who need any form of counsel. 
    • 1602 Pinhook Rd., Lafayette, LA 70508
    • (337) 981 - 2180
  • Church of Assumption
    • Support Group for bereaved parents 
    • 400 Camellia Blvd., Lafayette, LA 70503
    • (337) 380 - 5584
  • First United Methodist (New Iberia)
    • Support Group for bereaved parents
    • 119 Jefferson Rd., New Iberia LA 
    • (337) 369 - 3721
  • Maddie's Footprints 
    • Support Group for parents who have experienced the loss of a baby through miscarriage, ectopic pregnancy, stillbirth, or infant death. 
    • Address TBA call for info
    • (337) 534 - 4209
  • Asbury United Methodist (Grief Share) 
    • Support Group for Adults 
    • 101 Live Oak Blvd., Lafayette, LA 
    • (337) 344 - 5609
  • St. Peter & Paul 
    • Support Group for anyone who has lost a loved one 
    • 1301 Old Spanish Trail, Scott LA 70583
    • (337) 989 - 0232
  • Family Life (Grief Share)
    • Grief Support Group 
    • 2223 Dulles Drive, Lafayette, LA 70506
    • (337) 581 - 4197
  • Northside Assembly of God (Crowley)
    • Grief Support Group
    • 809 E. Northern Ave., Crowley, LA 70526
    • (337) 783 - 3620
  • First Baptist 
    • Grief Support Group
    • 1100 Lee Ave., Lafayette, LA 70501
    • (337) 298 - 4154
  • St. Mary 
    • Grief Support Group 
    • 419 Doucet Rd., Lafayette LA 70503
    • (337) 981 - 3379
  • The Bayou 
    • Grief Support Group 
    • 2234 Kaliste Saloom Rd., Lafayette, LA 70508
    • (337) 984 - 8291
  • Living Glory/Hope Campus 
    • Grief Support Group 
    • 1797 Declouet Hwy., Breaux Bridge LA 70517
    • (337) 332 - 0823
  • New Iberia Church of Christ 
    • Grief Support Group 
    • 667 Charles Street, New Iberia LA 
    • (985) 227 - 2010 
  • SWAT Health Clinic (Crowley)
    • Behavioral Health Clinic 
    • 526 Crowley Rayne Hwy, Crowley LA 70526
    • (337) 783 - 5519
  • SWAT Health Clinic (Lafayette) 
    • Behavioral Health Clinic 
    • 500 Patterson St., Lafayette, LA 70501
    • (337) 769 - 9451
  • Blumrich Counseling 
    • Counseling Center, Grief Groups 
    • 333 South Main St., Opelousas LA 70570
    • (337) 945 - 1032
  • Red Bird Ministry 
    • Supports families who experience child loss. 
    • 217 S Main St., Breaux Bridge LA 70517
    • (337) 223 - 9019
  • The RescYou Group
    • Financial support for families of child loss and more 
    • 221 Rue de Jean Suite 136 
      Lafayette, LA
    • (337) 534 - 4446

Certified Grief Specialists

  • Lafayette - Adrienne Mejias 
    • (337 ) 245 - 2500
  • Broussard - Jodie Boudreaux 
    • (337  ) 944 - 4041
  • Breaux Bridge - Misty Thibodeaux 
    • (337 ) 278 - 9173
  • New Iberia - Kimberly Smith - Dauterive M.D.
    • (337 ) 366 - 1240

Book Recommendations on Grief

  • Tuesdays with Morrie by Mitch Albom
  • How to Survive the Loss of a Love by Melba Colgrove
  • Sad Isn't Bad, a grief book for kids by Michaelene Mundy
  • What on Earth Do You Do When Someone Dies? By Trevor Romain
  • Understanding Your Grief by Alan D. Wolfelt
  • Healing Your Grieving Heart by Alan D. Wolfelt

Websites on Grief

We hope these tips bring you some comfort and clarity as a hospice caregiver.

Let HOPE Add Life To Your Days

Is it time for Hospice Care?

Take our Hospice Quiz below, and one of our knowledgeable team members
will contact you to discuss how HOPE Healthcare and Hospice can help
you or your loved one.

 

Take Our Hospice Quiz