Care Tips for Families

Here is our simple medication tracker. Print as many copies as you need to keep track of your medication doses and how you feel after taking the medication. This can help your hospice team know how well your medicines are working for you.

It is normal and expected to have some unwanted side effects when you take medications. You might notice side effects when you first start taking a medication, or if your dose needs to be increased or decreased.

If side effects of your medications are making you uncomfortable, talk to your Agrace team. They will help you come up with a plan to get you feeling better.

Ask your nurse before using this method, because some pills should not be crushed.

1. Wash your hands with soap and water, or use hand sanitizer. Try not to touch the pill with your bare hands; wear medical (disposable) gloves, if available.
   
2. Use clean, dry equipment, such as:
   • a pill crusher (preferred)
   • a clean plastic sandwich bag and a heavy cup/small hammer, or
   • a small cup/bowl and a sturdy spoon.
3. Crush the pill, then put ALL of it into a small bowl or cup.
4. Draw from 0.5 to 2 (milliliters) of water into your syringe. If it is difficult for the patient to swallow, use the smaller amount.
5. Add the water from the syringe to the crushed pill in the bowl. Use just enough water to dissolve the medicine.
6. Mix the crushed pill and water together until the medication dissolves.
7. Draw up ALL of the dissolved mixture into the syringe.
8. Have the person sit up or raise the head of your bed up to at least a 30-degree angle.
9. Drop by drop, place all the dissolved medication under the tongue.
10. Wash your hands with soap and water, or use hand sanitizer.

Allow time for the medicine to absorb. Do NOT swab or moisten the mouth for at least 30 minutes.

You may need to give “comfort medications” that are already in the home when a hospice patient is having trouble with symptoms such as:

• pain or breathing trouble,
• anxiety or nausea,
• noisy or wet breathing, or
• severe confusion.

These medications may include morphine, lorazepam, hyoscyamine and haloperidol. In case you have misplaced yours, here is Agrace’s printable guide for how to give these medications.

Before you give any comfort medication for the first time, please call Agrace at (800) 553-4289 and talk with a nurse to be sure it’s the right step.

Agrace cannot take back unused medications, but we will help you learn how to dispose of them safely. This will prevent harm to children or pets who might take them accidentally, or to others who might take them illegally.

Ask your Agrace team to show you the best way to safely dispose of the kind of unused medication you have, especially if you have “controlled substances.” We may suggest steps like these methods:

• drug take-back or donation programs, such as this one,
• proper disposal in household trash (usually mixed into coffee grounds or cat litter), or
• flushing down the sink or toilet.

It is illegal to put needles and other sharp medical items in the trash, recycling or medication collection drop boxes.

If you use needles, syringes or lancets for medication administration, follow these steps to dispose of them properly:

1. Ask your Agrace team to bring you a sharps container, or use a rigid container that cannot be punctured and has a secure lid or cap, such as an empty laundry detergent bottle.
2. Write “sharps” or “biohazard” on the container, and store it out of reach of children, pets and others who do not need access.
3. When the container is full, make sure it is securely closed and take it to a designated sharps collection site for appropriate disposal. Here is a map of those sites: Registered Sharps Collection Stations (shinyapps.io). When you are transporting the container, put it in the trunk or another enclosed part of your vehicle.

More information can be found on the Wisconsin DNR website: Managing household medical sharps | | Wisconsin DNR.

Pain Medication Side Effects

Appetite changes are common in people with advanced illnesses. Many lose interest in eating. Sometimes, taste changes and favorite foods no longer taste good. People may say that their foods taste “off” or have a “metallic” taste.

People with serious illnesses may feel full or have no taste for food for many reasons:

• As body functions slow down, the brain is signaled that food and fluids are no longer needed.
• A person may feel nauseated by movement, medications or blockages due to tumors.
• Cancer cells can release chemicals that affect the appetite center of the brain.

It is natural and common for people to lose their desire to eat and drink as their condition declines. They may take only sips of liquids or small bites of food that can be swallowed easily. At some point, they may lose the ability to swallow well and may not take in anything at all.

A person who is not hungry or thirsty may feel discomfort from having a dry mouth. Using mouth swabs and moisturizers for the lips can help bring relief.

What can family or caregivers do to help?

• Let the person who is dying decide when and how often they want to eat and drink. Let them know it is OK to say “no” to food and fluids—and accept their decision.
• Offer a selection of food and drink, but do not pressure or push. Trust that the person is following cues from their body.
• Keep their lips and mouth moist.
• Find other ways to show love and concern, such as giving a massage, playing cards or reading aloud.
• Remember that your presence, comfort and loving care are the most important things you can offer.

The amount of urine a dying person produces typically decreases. Urine may become darker as both fluid intake and blood-flow through the kidneys decrease.

As the person declines, they may lose control of their bladder and bowels. This is completely normal. A urinary catheter or protective underwear may be needed to prevent skin breakdown and keep the person comfortable.

Weakness and fatigue increase as death nears. The person may need help with simple tasks, such as taking a sip of water or turning in bed, and may sleep most of the day.

Your hospice team will help make a plan to ensure everyday needs, such as bathing and grooming, are met. We will offer suggestions for conserving energy, so time can be spent focusing on whatever the person enjoys. We work to help them be as awake as they would like and as comfortable as possible.

A person who is dying may have unusual breathing patterns and/or loud, wet-sounding breathing. Although these issues might be distressing to others, they rarely cause discomfort to the dying person.

Loud, rattling breathing may happen as the person become less able to swallow saliva or fluids. The “wet” sound is often due to a small amount of saliva in their throat that they are unable to cough up or clear. Suctioning has limited benefits, and it may make the congestion worse.

Family or caregivers can help by:

• Changing the person’s position; turning or raising their head allows gravity to drain the saliva and can also help change breathing patterns.
• Medications may also be used to reduce the production of saliva.

Breathing patterns may be slow and even at times and irregular and shallow at other times. Breaths may be separated by long pauses. These pauses are called “periods of apnea” and may last from seconds to more than a minute. As death nears, periods of apnea may become longer. A person may have periods of apnea for several days before death. Breathing may also be very fast at times.

Most people have an irregular pattern of breathing minutes before death. It is often followed by a short period of very shallow breaths, and then breathing stops. If you question a patient’s breathing comfort at any time, please call Agrace immediately.

Changes in blood flow may cause some noticeable changes in the person’s body. Hands and feet may become darker or paler and colder to the touch. The skin on the arms and legs may appear blotchy and purplish. This discoloration, called “mottling,” is the result of reduced blood flow. An increase in mottling can be a sign that death may be near. People who are dying are not usually aware of these changes and rarely feel discomfort from them.

Some people develop a fever as they near death. The hospice nurse may give medication for the fever, but it does not always work to reduce the temperature. Most people do not appear uncomfortable as a result of fever.

Managing pain is an essential part of end-of-life care. Pain can almost always be controlled, and the person can be kept comfortable through the dying process. Medications can be used to keep them comfortable without too many side effects and without excessive drowsiness. Please talk with your Agrace team if you have any concerns about managing pain.

Changes in body chemistry may cause a person to be confused about what time it is or where they are. They may not recognize close and familiar people. Loved ones can help by providing calm reassurance in response to their questions.

As death approaches, it is common to feel fear and anxiety about the dying process and death itself. The person who is dying may show their anxiety through anger, withdrawal, restlessness, demanding behavior, irritability or crying.

Most people feel some level of anxiety at times. Some ways to ease anxiety include comforting them with touch, active listening, calmness and medication.

It may also help to keep lights low, keep the room quiet or play soothing music, and try relaxation techniques such as deep, controlled breathing.

Some people become minimally responsive for hours or even days before death. They show little awareness of their surroundings. Others remain clear and alert up to the last few moments. Generally, people are gradually less and less alert as death approaches.

As a person becomes less responsive, there may be less opportunity to have meaningful communication. Even if they cannot respond, they may continue to hear and have a level of awareness.

You should always assume the person hears everything you are saying. Talk to them as clearly and directly as if they were awake and alert.

Some people have a period of restlessness as death approaches. Restlessness may be caused by physical, emotional or spiritual factors. You may see them picking at their clothes or bedding, reaching into the air or moving about in bed.

It can help if you provide a calm and reassuring environment. If their restlessness appears to be bothersome, contact your Agrace team for suggestions.

Sometimes a person who is nearing death will use words and phrases that lead others to believe they are confused. This language can be very meaningful to the patient and their family, and it can be symbolic of the life they led.

People who are dying may talk about events in their past. They may use words that describe the need to move, travel or go to another place, or they may talk about a specific time that they will die. They may speak to someone who is no longer alive or express a need for reconciliation or forgiveness. This is common at the end of life.

Offer your supportive presence, and pay attention to what is said. It is often very meaningful. Many dying people do not appear to be distressed because of symbolic language or visions. If the person seems distressed or you have concerns, contact your Agrace Hospice Care team.

People often become less interactive and more withdrawn as death nears. This may be partly due to physical factors but may also reflect the person’s need to process the situation emotionally and/or spiritually.

Withdrawal can be a difficult experience for loved ones. A loving, supportive presence may be all the person needs or wants at this time.

• Who to contact when an Agrace patient has died
• Who to notify after the death (printable checklist)
• Donating extra medical equipment or supplies
• Getting a death certificate:
  You can order death certificates through the funeral home. The funeral home will often ask how many certificates you need and can provide them for a discounted fee. If you need more certificates later, or you chose to act as your own funeral home, you can order death certificates from the County Clerk’s office of the county where your loved one died.