Family & Caregiver Resources

Five Senses of Caring

Patient Safety at Home

Managing Common Symptoms

Caregiver Tips

Advance Directives

Five Senses of Caring →

Patient Safety at Home →

Managing Common Symptoms →

Caregiver Tips →

Advance Directives →

The Five Senses of Caring

Sharing a person’s final days, weeks or months of life may be difficult. During this time, the people we love need our support and care. Sometimes it is helpful to know what to expect and how we can better communicate with the person who is facing this unique time in life.

It is our hope that you will find the strength to give support, provide comfort and take the opportunity to show your loved one what they mean to you. The following may offer insight.

Vision

Vision is often the first sense to be affected by serious illness.

A person’s vision can be greatly reduced due to:

Excessive tearing or dryness
Inability to tolerate a great deal of light
Lying in a position in bed that makes it hard to see others
Not wearing glasses
Inability to focus due to medications

You can do the following to help:

Keep glaring lights out of the person’s eyes
Allow frequent times for the person to rest their eyes
Stand or sit in a place where the person can easily see you – use pillows or roll the bed to a position where it is easier for the patient to see
Offer to assist with glasses
Give the person permission to close their eyes when they are visiting with you

Taste

The sense of taste often leaves when a person is ill. This can be difficult to cope with when we are accustomed to showing our love by sharing food. It is tempting to try to make a person eat to regain their strength or feel better. Unfortunately, patients may have no appetite or food makes them feel worse.

It is sometimes helpful to share small amounts of a patient’s favorite food…a small piece of candy, juice, a favorite beverage or just a bite of a favorite food or dessert. Good, frequent mouth care can sometimes help and is an important comfort measure.

Smell

Smell is one of the senses that stays the longest and is often highly sensitive until the very end of life. Many times it is scent that brings back a host of memories. Sometimes, when people cannot speak or hear, smell can provide comfort. Remember, scents should be VERY light and it is best to avoid mixing scents.

Light scents people tend to enjoy include:

Potpourri
Scented candles
Fresh flowers
Citrus air fresheners
Special “memory” fragrances like apple pie or peach cobbler

An idea: Try presenting a scent that you know will connect the person with you, like roses. Then talk quietly about the memory involving the two of you and the roses.

Touch

Touch is usually the very last sense to be diminished. Even when a person is close to death, the skin around the face and neck is particularly sensitive to touch. Touch is very important. A touch of the hand or gently massaging the skin with warm lotion can be very, very comforting. Some people love to have their feet massaged with lotion. Others appreciate a cool cloth to the forehead or behind the neck. Sometimes, people don’t want to be touched, particularly if they are in pain.

At other times, people may be withdrawing from those they love, perhaps making it easier to separate. Sometimes, just touching one finger is all that can be tolerated, accepted or received. It is helpful to ask permission to touch. Watch carefully for a response. You will be fine if you move gently and with love.

Hearing

We know that hearing almost always endures the longest, even though the patient may be unable to speak.

Things to remember include:

Make sure the person wears their usual hearing device if they are accustomed to having one and it is comfortable.
If one ear is better than the other, remember to conveniently position the person so their good ear is nearest to you.
Speak clearly in a distinct tone.
Try to be aware of other sounds or noises that may interfere with the person’s hearing, like several people talking across the room.
Talking to those we love, even very close to death, is very comforting. Often, they can hear us in ways we may not even understand. Don’t be afraid to share your feelings and encouragement. You likely will be heard.

Patient Safety at Home

Questions? Call us anytime at (866) 310-8900.

The following information is specifically for patients and families living in a residential home or assisted living facility.

Electrical Safety to Prevent Fires

Cords must not be placed beneath furniture or rugs.
Replace frayed cords.
Extension cords must not be overloaded. Check rating labeled on appliance cord.
The plug shape and number of prongs should match the outlet.
Multiple outlet adapters should not be used on electrical outlets.

Rugs, Runners and Mats to Prevent Falls and Injuries

Loose rugs, runners and mats should be secured to floor with double-sided adhesive or rubber matting.
Carpet edges should be tacked down.
Torn, worn, frayed carpeting should be repaired, replaced or removed.

Telephone

Locate at least one phone where it is accessible in the event an accident renders a person unable to stand. Emergency phone numbers should be posted near the phone.

Fire Safety

Fire regulations recommend one smoke detector on every level of the home
Develop an evacuation plan to exit the residence in the event of a fire.
Prioritize family members who are dependent, non-ambulatory or will require assistance.
Establish clear pathways to all exits. Do not block exits with furniture or boxes.
Have key accessible near dead bolt locked doors.
Do not leave cooking unattended for extended periods of time.
Chimneys should be inspected annually to avoid dangerous build up of creosote.
Kerosene heaters, wood stoves, fireplaces should not be left unattended while in use.

Cupboards and Closets

Cupboards should be organized so that frequently used items are within reach on lower shelves.
A sturdy step stool should be used to reach items on high shelves.
Heavy items should be stored flatly on lower levels of the closet to avoid falls and injuries.

Bathrooms

Tubs and showers should have a textured surface or nonskid mats or strips to avoid falls.
Grab bars to assist transfers should be installed in tub, shower and toilet areas.
Check water temperature with your hand before entering the tub or shower.
A night light should be used in the bathroom.

Stairs

Stairs, hallways and passageways between rooms should be well-lit and free of clutter.
Stairs should have sturdy, well secured handrails on both sides.
Avoid using stairs while wearing only socks or smooth-soled shoes.

Outdoors

Entrance ways should be clear of leaves, snow and ice.

Infection Control

Hand washing is the best way to prevent the spread of infection.
Wash your hands after potential contact with infectious materials and before eating to protectyour health and the health of others.
Surfaces that have contact with food or infectious materials should be kept clean.
If you believe you may have a contagious illness, take measures to control the spread of infection through:
- Notifying HopeWest
- Covering your mouth when coughing or sneezing
- Washing your hands frequently
- Notifying your HopeWest nurse if you have an open wound/issue with your skin

Tube Feeding and IV Solutions

Tube feeding (enteral) and IV nutrition (parenteral) are two ways to provide nutrition to people who cannot digest food and medication normally.

Storage
Tube feeding (also known as enteral) products can be stored at room temperature for the time period based on the expiration date. Most tube feeding product come premixed in a can, however there are some products that come packaged in powder form. These products are mixed with the instructed amount of water before being administered. An open can or container of tube feeding product must be dated, covered, stored in a refrigerator and used within 24 hours after being opened.

IV nutrition (also known as parenteral nutrition) products must be stored in a refrigerator and must be used/given to the patient, within 24 hours of being mixed by a pharmacist or a registered nurse. IV nutrition should be removed from the refrigerator 1 hour before administration. Lipids are a type of IV nutrition product that do not need tobe refrigerated but must be used/givento the patient within 12 hours of being mixed by a pharmacist or a registered nurse.

Handling and Administration
Tube feeding can be handled the same way you handle perishable foods. Good hand washing and clean supplies are required. When the tube feeding product expires you can dispose of it in the trash. Tube feeding is administered through a tube in the stomach (also known as a G-tube or J-tube) placed by a doctor, or a tube that is passed through the nose into the stomach (also known as a NG tube) that is placed by a nurse or doctor. The tube feeding solution can be given by gravity or with they use of a pump.

IV nutrition must be handled the same way that medication that is given IV is handled. Good hand washing and new sterile supplies are required for each administration. Sealed bags of the nutrition product are prepared by a pharmacist or registered nurse, administered with IV tubing through a catheter that is in a vein placed by nurse or doctor. The catheter delivers the nutrition directly into the bloodstream. A pump is utilized to administer the IV nutrition.

Disposal
Unused or expired tube feeding and IV nutrition can be disposed of in the sink or toilet. Tubing supplies can be disposed of in the trash. Supplies that are contaminated with body fluid must be double bagged and thrown in the trash.

Managing Common Symptoms

Questions? Call us anytime at (866) 310-8900.

Hospice patients can experience many kinds of symptoms such as: pain, restlessness/agitation, confusion/delirium, lethargy/weakness, shortness of breath, and nausea/vomiting. Our doctors and nurses are committed to working with each patient, family and primary doctor to identify the source of the symptom and create a plan to manage the symptom. Communication with the HopeWest Team is the best way to get a symptom managed as soon as possible.

Pain

Pain control is one of the central goals of hospice care. Most patients and families who use hospice services expect that the care team will make every effort to relieve the pain which afflicts their loved one. There are many different types of pain. The following are examples of pain that the HopeWest team will monitor for and treat:

Physical
Nerve pain
Muscle pain
Bone pain
Emotional
Spiritual

Signs and symptoms of pain:

Facial grimace/furrowed brow
Holding/grasping at area affected by pain
Restlessness/agitation
Withdrawal/sleep
Moaning

Treatment for pain:

Medication (over the counter and )
Alternative treatments (massage, acupuncture, healing touch and chiropractic adjustment)
Prayer/meditation/guided imagery
Adjustment to the environment
Music therapy

Restlessness/Agitation

Many families may be surprised when a seriously ill (and usually calm) family member becomes restless or even agitated. Restlessness or agitation varies from person to person, and some do not experience restlessness or agitation at the end of life.

When a person is in the last days or hours of life, some may experience mood changes. The mood changes can be difficult for family members to handle. Causes and treatments for restlessness and agitation are well-known among our palliative care professionals who work with the dying on a regular basis.

Signs and symptoms of restlessness and agitation:

Increase in physical activity that is not purposeful (wanting to move from the bed to the chair and then from the chair back to bed)
Abnormal behavior (irritable or over sensitive when normally calm)
Delusions and/or hallucinations (believing and/or seeing things that are not real)

Treatment for restlessness and agitation:

Rule out other symptoms/treatable cause (pain, infection, constipation, urinary retention, etc.)
Medication
Alternative treatments (aromatherapy)
Adjustment to the environment
Oxygen if appropriate for condition
Redirection
Music therapy

Delirium/Confusion

Delirium is a complex psychiatric syndrome that is also called confusion, encephalopathy, and impaired mental status. It often looks like a sudden change in alertness and behavior that may change over the course of a day, usually gets worse at night.

Signs and symptoms of delirium/confusion:

Change in level of consciousness with decreased awareness of the surrounding environment
Decreased short-term memory and attention span
Disorientation to time and place
Delusions and/or hallucinations (believing and/or seeing things that are not real)
Change in speech –may be really loud or soft, very fast or slow, or not understandable
Mood swings
Sleep disturbances – insomnia or reversed sleep cycle
Abnormal activity – body movements may be increased or decreased, very fast or slow

Treatment for delirium/confusion:

Rule out other symptoms/treatable cause (pain, infection, constipation, urinary retention, etc.)
Medication
Alternative treatments (aromatherapy)
Adjustment to the environment
Oxygen if appropriate for condition
Redirection
Music therapy

Lethargy/Weakness

Lethargy/weakness is the most common symptom in hospice patients. Lethargy/weakness is generally under-reported and under-treated, can be extremely debilitating and may have a severe negative impact on quality of life. Lethargy/weakness is the feeling of tiredness and decreased ability to perform physical and mental work.

Signs and symptoms of lethargy/weakness:

Feeling tired or giving up
Mentally (having difficulty comprehending)
Physically slow
Depression
Decreased activity
Increased sleep
Withdrawal/lack of interest

Treatment of lethargy/weakness:

Rule out other symptom/treatable causes (anxiety, over medication, infection, etc.)
Decrease the pressure on the patient to be energetic
Give permission to rest

Shortness of Breath/Dyspnea

Many patients with serious illness experience shortness of breath, a symptom that health care professionals call dyspnea. Dyspnea can be very frightening to patients and their families. The experience of shortness of breath can range from mild (the general feeling that happens only with physical movement, such as walking up stairs) or it can be so severe that the patient cannot talk, walk or eat.

Signs and symptoms of shortness of breath:

Feeling tightness in the chest or can’t breathe
Fast breathing pattern
Light headed feeling
Confusion
Discoloration around the lips or nail beds

Treatment of shortness of breath:

Medication
Oxygen
Change in position
Cool circulating air (fan in the room or open window)
Relaxation techniques/ decrease stimulation
Provide emotional support

Nausea and Vomiting

Nausea and vomiting are common and distressing symptoms in many hospice care patients. Identifying the cause or causes and treating the symptoms promptly can increase comfort and quality of life. Nausea is an unpleasant feeling in the stomach that may or may not be followed by vomiting. Nausea is very common as a patient moves toward the end of life. There are several causes of nausea and vomiting. Noxious odors, tastes, or sights can sometimes trigger this response. Certain medications, constipation, or a bowel obstruction cam be causes of nausea and vomiting.

Signs and symptoms of nausea and vomiting:

Queasy feeling
Lack of appetite
Decreased interest in food of drink

Treatment of nausea and vomiting:

Rule out other symptoms/treatable cause (pain, infection, constipation, etc.)
Medication
Homeopathic remedies
Cool compress
Fresh or cool air
Avoid odors that trigger nausea
Offer small meals

Apnea

It is quite common for the terminally ill to exhibit altered patterns of breathing. What this means is that the patient may breathe abnormally slowly, quickly, may pause for short or very long periods (called apnea), or may breathe in irregular patterns or rhythms of breathing. Each pattern or rhythm of irregular breathing has a specific cause, meaning and interpretation which experienced hospice physicians and nurses will recognize.

Although you may find it difficult to see your loved one breathing in these ways, it may be a sign that he or she is in decline and getting closer to death, or that certain organs are failing. Longer and longer periods of apnea (pausing when breathing) can occur, lasting from five to ten seconds or even up to one minute or more.

After these periods of apnea, breathing again resumes and the pattern may repeat itself. These periods may get longer as your loved one approaches closer to passing away, but this does not happen in all cases. Some patients may breathe extremely fast up to thirty or forty breaths per minute or more.

These altered patterns are to be expected and do not necessarily mean that the patient is suffering due to that pattern. Sometimes these altered patterns of breathing continue for weeks or even months. It is important that you report any changes in breathing pattern to your HopeWest Team.

Caregiver Tips

Questions? Call us anytime at (866) 310-8900.

During our lifetime, many of us become caregivers. We’re often driven by a sense of obligation – but on a deeper level, caring for our loved ones demonstrates the love, gratitude and honor we feel toward them. Many caregivers believe that the role has enhanced their lives in unexpected ways, strengthening their relationship with their loved one or giving new purpose to their own lives.

Caregiving can also be exhausting and frustrating work. One of the biggest challenges for caregivers is remembering to pay attention to their own physical and emotional needs. When caring for someone else, you need to also care for yourself – it is not selfish – it is absolutely necessary.

If you’re a caregiver, keep in mind these valuable tips:

Sit down and eat three meals a day – it is so easy to forget this when you’re busy. Making enough food for two or three meals can help.

If your nights are broken up assisting your loved one, take a nap during the day while he/she rests. When you miss a few nights of sleep, it’s hard to keep going.

Get out for a breath of fresh air or a change of scene. Even a brief walk around the neighborhood can make a big difference in your outlook.

Relax in a warm bathtub or with a good book. Let yourself be alone to clear your thoughts and worries.

Let friends and other family members help you. If they can participate somehow, they will feel less helpless. Let people bring meals, run errands, stay with your loved one while you go out, etc.

Talk with friends and family about your feelings and concerns. This may not be easy, but it can be healing to cry and express emotions.

Support groups help by showing you that you’re not alone. In the group setting, you can share your experiences and ideas with people who are in similar situations.