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Hospice patient & caregiver resources

Some people have extensive experience caring for a loved one in hospice. For others, the role as caregiver is brand new. In either situation, it can be challenging to know when to contact your Gundersen hospice team for help. If your loved one is experiencing any of the following symptoms or if any of these symptoms are worsening, please reach out to your care team.

When is it time to contact Hospice?

Please contact the hospice team if your loved one is experiencing any of the following symptoms or if any of these symptoms are worsening.

Emotional or mental symptoms

  • Mood swings, agitation, anger, irritability
  • Hallucinations (seeing images or hearing voices)
  • Feeling down, hopeless, depressed, disinterested or withdrawn from others
  • Unsafe behavior, thoughts of death, suicide, hurting self or others
    • Signs may include having firearms in the home or stockpiling medications.
  • Confusion or confusion at night, often called "sun downing"
  • Decreased attention span or difficulty focusing or thinking
  • Difficulty making decisions
  • Feeling anxious or having excessive worry or fear
  • Unaware of what is socially acceptable behavior (inappropriate talk or dress, etc.)
  • Concerns about disease

Physical symptoms

  • Pain
  • Shortness of breath or difficulty breathing
    • Skin turning bluish (face, lips, nose, ears fingers or toes)
  • Change in fluid intake 
  • Lack of energy or too tired to eat
  • Decrease in urine output
  • Change in frequency or type of bowel movements
  • Nausea and/or vomiting 
    • It is important to provide Hospice staff with the amount, frequency and description of the vomit.
  • Trouble speaking or language problems
  • Drowsiness, sluggishness or just feeling too tired for normal activities or routine tasks
  • Wandering
  • Trouble sleeping
  • Changes in medication

Social symptoms

  • Relationship problems with family or friends
  • Financial concerns

Spiritual symptoms

  • Faith-related concerns or questions

Symptom management

Symptoms vary between patients in hospice care, but many people tend to experience some more than others. Here are some of the most common, with tips on how to help manage them.

Anxiety and uneasiness

Anxiety is a feeling or deep sense that things are not right. It is common to occasionally experience some anxiety, but strong, extreme and lasting worry or fear can greatly affect your life. If anxiety is keeping you from your daily activities, we encourage you to seek help by talking with your hospice team.

How to help relieve anxiety

In addition to talking with a member of your care team, the following also can help relieve anxiety:

  • Write down thoughts and feelings.
  • Treat physical problems, such as pain, that can cause anxiety.
  • Try relaxing activities like deep breathing or yoga.
  • Play soothing music.
  • Keep surroundings calm.
  • Limit visitors.
  • Massage arms, back, hands or feet.
  • Avoid caffeine and alcoholic beverages.
  • Exercise.
  • Only use medications as prescribed.

Delirium

Delirium is often confused with anxiety, but it is different. Delirium, which is common at end-of-life, occurs when a hormone in the brain becomes less active. This results in a person being unable to pay attention and often feeling overwhelmed. Some changes that occur in a person with delirium can be sudden and scary. They may include:

  • "Sun downing," or experiencing confusion that is worse at night
  • Mood swings (agitation, irritability, etc.) that may change over the course of a day
  • Difficulty focusing or paying attention 
  • Hallucinations (seeing, hearing or feeling things that are not there)
  • Drowsiness and sluggishness

How to help someone with delirium

As a caregiver, there are ways to help loved ones experiencing delirium, including:

  • Keeping the patient safe.
  • Allowing the patient to sleep. This is the best way to heal the brain.
  • Providing a quiet, peaceful setting, without TV and loud noises (soft music is sometimes soothing). 
  • Avoiding asking a lot of questions, but still offering support.
  • Reminding the patient who you are and telling them what you are going to do.
  • Maintaining a routine and structure.
  • Keeping a light on in the dark.

Dementia

Dementia is a result of diseases that affect how the brain works. The most common cause is Alzheimer’s disease. Symptoms occur gradually over time, with memory loss usually being the first sign. While dementia affects both mental and physical functioning, the disease does not impact every person in the same ways.

Symptoms of dementia fall into five groups. All of them pose safety risks for patients with dementia. They include:

  • Decreased attention span
  • Difficulty with decision-making
  • Memory (long-term memory is usually better than short-term memory).
  • Language problems (trouble with names or objects, using the wrong words, etc.)
  • Unawareness of what is socially acceptable behavior (may not dress for situation or weather, speaking inappropriately, etc.)

How to help someone with dementia

As a caregiver, it is important to respect the person with dementia by treating him/her as an adult and remembering:

  • He/she has limited control of their abilities and behaviors.
    • Allow the person as much control as possible. Let them do as much of their own care as possible. One way to do so is by always giving the person two choices, such as asking: "Do you want to wear the green shirt or the red shirt?"
    • All behaviors communicate something. Try to find the meaning behind the behaviors, emotions and feelings. Being combative during a bath may mean the person is cold.
    • When bothersome or unsafe behaviors are exhibited, redirect the person to safer, more enjoyable activities.
  • He/she believes that their "reality" is what is real.
  • Don’t argue with the person.
  • Remind the person of the day, place and time, until this no longer has meaning to them. Use visual cues when possible (large clock, etc.).
  • Tell the person what you will do before you do it.
  • Create a daily routine with small rituals they can complete (washing hands, saying prayers, etc.).
  • Do activities that may prompt positive memories or have special meaning to the person.
  • Try not to overtire or overwhelm the person.
  • Provide physical closeness, such as hand holding, if the person allows.

Depression and psychological distress

Depression and psychological distress may show up as feelings of sadness, numbness, emptiness, helplessness, hopelessness, worthlessness and guilt. Other signs include:

  • Fatigue or sluggishness
  • Loss of appetite 
  • No interest or pleasure in daily activities
  • Withdrawal from family and friends
  • Sleep problems 
  • Difficulty focusing, thinking or making decisions
  • Thoughts of death or suicide
  • Agitation, anger or anxiety

How to help relieve depression

There is a wide range of intensity of depression. A patient’s care team will help sort out the causes of depression and discuss treatment options. The following may help with depression:

  • Increase physical activity, rest and nutrition.
  • Set small, realistic, achievable goals.
  • Establish a daily routine that includes a regular sleep schedule.
  • Utilize relaxation techniques.
  • Consider complementary therapies such as aromatherapy, art and music therapy.
  • Avoid alcohol, non-prescribed drugs and herbal remedies.

As a caregiver, how to help someone with depression

  • Keep the area safe.
  • Provide a calm, relaxing setting.
  • Be supportive by letting the person know you are there for them. 
  • Be with them without having to "do" something.
  • Allow the person to express their feelings.
  • Allow the person as much control as possible related to treatment decisions and activities.

Fatigue

Fatigue is a feeling of being tired or exhausted. Even after getting plenty of sleep or rest, people with fatigue feel like they have no energy. They often are so tired they cannot do the activities they enjoy.

How to help relieve fatigue

The Hospice team will work with you to find the causes for the fatigue and discuss possible treatment options. The following may also help:

  • Slowly increasing activity. Do a little at a time to save energy.
  • Keeping a log of what time of day you seem to have the most energy and plan to do activities during this time.
    • Try activities that restore energy, such as music, meditation or time outdoors.
    • Avoid or delay activities that are not a priority.
  • Changing positions. Do not just stay in bed.
  • Allowing caregivers to assist you with daily activities.
  • Using sunlight or a light source to help feel more energized.
  • Resting and sleeping better.
    • Listen to your body and rest as needed.
    • Plan rest times or naps in late morning or mid-afternoon.
    • Keep a regular time to go to bed and to wake up.
    • Avoid things that may prevent sound sleep such as lighting, certain food, drinks or medicine taken too late. 
    • Get continuous hours of sleep and avoid interruptions. 
    • Ask if using oxygen will improve sleep.
  • Increasing food intake. 
    • Try nutritious, high protein foods. 
    • Add protein supplements to foods or drinks.
    • Eat small, frequent meals.

Nausea and vomiting

The Hospice team will try to discover the underlying reason and offer possible treatment options for any nausea and vomiting.

How to help relieve nausea and vomiting

  • Record what seems to cause you to feel nauseous or vomit and what makes you feel better.
  • Sip carbonated drinks that have gone flat.
  • Drink sports drinks such as Gatorade® (Pedialyte® for children).
  • Eat small amounts of salty foods, such as crackers and broth.
  • Provide frequent mouth care.
  • Sip water or ice chips before eating again.
  • Maintain a comfortable room temperature.
  • Increase air flow by opening windows or using a fan.
  • Try alternative therapies or activities that may distract from nausea (e.g., listen to music, watch TV, do puzzles, sketch, read or try yoga).
  • Avoid juices, fried foods, milk products and foods with strong smells.
  • Avoid strong odors such as perfume and deodorizers.
  • Avoid constipation.

Shortness of breath (dyspnea)

Shortness of breath is an uncomfortable feeling that results from having difficulty breathing.

How to help relieve shortness of breath

To maximize breathing, the following can help:

  • Sit with your hands on your knees and slightly bent forward.
  • Elevate your head on pillows when lying in bed.
  • Practice pursed lip breathing. Take slow, deep breaths. Breathe in through your nose. Then, breathe out slowly and gently through lips that are "puckered" as if you are whistling.
  • Increase air movement. Open a window or use a fan (hand-held fans can be easily used) or air conditioner.
  • Apply a cool cloth to your head or neck.
  • Use oxygen as directed by your healthcare provider.
  • Use prayer, medication, calming music or massage to relax.

Caring for the caregiver

The caregiver is the individual, usually a close family member or friend, who provides primary care to a hospice patient. With help from the hospice team, as a caregiver, you can learn to control your loved ones' symptoms, administer pain medication and provide the day-to-day comfort that best meets their needs and wants.

Although caring for a loved one can be rewarding, it can also be challenging and may drain you emotionally, physically and spiritually. To cope with this:

Accept your feelings

All of your feelings are real and okay – including sadness, frustration, anger, guilt and resentment. Accepting and expressing your feelings to family members, friends and the hospice team can help. Even though it may feel like it, please remember you are not alone.

Know when you're experiencing too much stress

Symptoms of stress include feeling irritable, worrying excessively, preoccupation, having trouble sleeping, experiencing changes in bowel habits and more. Reach out to family, friends and others who may be able to help you. Consider joining a caregiver support group (hearing how others cope with the same challenges can help you manage your own). If you need a break, a hospice volunteer may be able to stay with your loved one for a few hours at a time. Another option available is Gundersen's in-hospital respite care.

Maintain your health

Your well-being affects your outlook on life and how you cope with the demands of a being a caregiver. Eat a well-balanced diet, exercise daily, get plenty of rest/sleep and allow yourself time to do something you enjoy. Recognize what you can and cannot do. If you're able to, try to find humor in little things. Laughter is a healthy way to release tension that can lift your mood and help you through stressful times.

Love + Medicine

Every day, Gundersen Health System staff deliver great medicine plus a little something extra—we call it Love + Medicine.

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