The Reading Room

Advanced Directives and Special Considerations Based on Diagnosis

There are certain diseases that require special thought and attention when it comes to creating advanced directives.
Alzheimer’s Disease/Dementia – Alzheimer’s is a progressive disease, which means it gets worse with time. If someone with Alzheimer’s lives long enough, they will most likely get to a point where they are unable to communicate their wishes. This is why having advanced directives in place early is so important.

Cancer – Goals of care often change throughout the cancer treatment journey, especially if cancer becomes chronic or terminal. If this happens, it is important to consider what treatments – such as chemotherapy, radiation, and blood transfusions – will be continued and if the benefits and risks are in alignment and support the goals of care. Chronic Obstructive Pulmonary Disease (COPD) – This disease often has periods of “flare-ups” when symptoms are difficult to manage, along with short periods of improvement, but eventually it can become terminal or life-ending. Goals of care often change throughout the COPD journey. It is important to consider what treatments – such as antibiotics and mechanical assistance with breathing – will align with the goals of care as the illness progresses.

Kidney Failure – As kidney failure progresses, dialysis becomes the only option to stay alive. Even with the best care and support, eventually the physical and emotional toll of dialysis sometimes outweighs the benefits. It is important to consider what the goals of care are and if dialysis continues to be in alignment with these goals as the illness progresses.

What is Financial Caregiving

Financial caregiving is a term used to describe managing the personal finances of a seriously ill or elderly person who requires assistance – including paying bills, overseeing bank accounts, filing taxes, and taking on financial power of attorney.

How to Provide Financial Caregiving

• Talk about finances with the person you are caring for. Try to get a picture of their financial situation, including areas of concern. This can be difficult, but it’s an important step to understanding their financial situation.
• Be sensitive to the person’s need for independence. Consult with the person you are helping. Offer to start with small tasks, such as paying bills or balancing the checkbook.
• Get input from other people, if appropriate. If there are others that want to help or be involved, include them sooner than later - if the person you are caring for agrees.
• Make a list of all expenses and debts. This includes utilities, mortgage or rent, car payments, insurance, real estate taxes, and more.
• Document all income. This includes social security, pensions, retirement distributions, survivors’ benefits, and more.
• Create a budget. A budget should include all income and expenses, including both fixed and irregular ones. Plan for how to pay for all expenses, and plan for cost of living to increase with time.
• Make an inventory of accounts. This should include all accounts, insurance policies, credit cards, website user IDs and passwords. Keep this information private, safe and secure.
• Get access to accounts. This can be as simple as getting your name added to accounts as a joint account holder or having the primary account holder give verbal agreement authorizing you to speak on their behalf.
• Get authorization to speak on behalf of care recipient. This can be made official by executing a durable power of attorney for finances.
• Simplify and automate. Set up auto-pay for all regular bills. Only keep open the credit card accounts that are necessary. Consolidate assets, if appropriate.
• Limit risk and keep records. If the person you are caring for has cognitive issues, it may help to have a credit card with a low limit or a debit card from a bank account with a small balance – just to be safe.
• Don’t forget about taxes. Income taxes will still need to be filed, real estate taxes need to be paid, and required minimum distributions (RMDs) from retirement accounts still need to be made.

Long-Term Care Options

There are different options available for long-term care – depending on your needs and financial situation.

1. Assisted Living Facility (ALF): This type of facility provides seniors with non-medical care and supervision. This level of care is appropriate for people who need assistance with daily activities but are still able to maintain some independence. The staff can offer help with medication management, personal care, housekeeping, laundry, meals, and social activities. This is paid for by the individual and is not covered by Medicare or Medicaid. This may be partially paid for by long-term care insurance.
2. Supportive Living Facility (SLF): This type of facility provides seniors with the same or similar care as an assisted living facility; however, this type of facility accepts Medicaid for payment.
3. Skilled Nursing Facility (SNF): The type of facility provides temporary care for people with more advanced nursing or health care needs. This may also be referred to as “rehab” after a hospital stay, because it offers nursing and therapy services. Medicare and/or Medicaid may pay for this for a brief time, but there are specific conditions that must be met.
4. Nursing Home or Long-Term Care Facility (LTC): This type of facility may offer long-term 24/7 care that includes some medical assistance. This type of care may be offered in the same building as the SNF. Some nursing homes accept Medicaid, but there are conditions for this to apply. Medicare may pay for some of the skilled nursing services, but not for the non-skilled care. This type of care may also be paid for privately or with long-term care insurance.
5. Home Health Care: This is a type of care provided to patients in their home. This may be covered by Medicare, Medicaid, or private insurance if you are homebound and need short-term, intermittent skilled nursing or therapy services. This type of care requires a doctor’s order.
6. Caregiving Services: This is a type of care provided to patients in their home usually for longer periods of time each day. Services provided are typically assistance with personal care, housekeeping, cooking, and companionship. Caregiving services may be paid for by Medicaid, the VA (for veterans only), long-term care insurance, or private pay. If you have Medicaid, a family member can qualify to be a paid caregiver through the Illinois Department on Aging and the Community Care Program. For more information, please visit https://ilaging.illinois.gov/programs/ccp.html.
7. Hospice: This is a type of care provided when you have a terminal, or life-limiting condition. It is provided wherever you call home, and is covered by Medicare and Medicaid, as well as by most private insurance companies.

Medicaid Spenddown Program

What is the Spenddown Program?

• The spenddown program helps some people who have too much income or too many assets like bank accounts and other resources to qualify for Medicaid and possibly other medical programs. If you have medical bills or receipts for recent payments made for medical care, you may qualify under spenddown to get a medical card to pay for some of these expenses.

• Spenddown works a little like an insurance deductible. You pay for the cost of your medical care up to a set amount each month based on your income and assets. This is called your spenddown amount.

• Once you can show bills or receipts for medical care, drugs or supplies that are equal to your monthly spenddown amount, you can get a medical card to pay for other medical care you need for a month.

• Pay-in spenddown lets people pay the spenddown amount each month instead of submitting bills. This is like paying a health insurance premium each month. Not everyone can have pay-in spenddown.

Medicare and Medicaid

Medicare is federal health insurance for anyone age 65 and older, and some people under 65 with certain disabilities or conditions.

Medicaid provides health coverage to millions of Americans, including eligible low-income adults, children, pregnant women, elderly adults and people with disabilities. The program is funded jointly by the state and the federal government.

• If you qualify, you can have both Medicare and Medicaid.
• People who have both Medicare and full Medicaid coverage are “dually eligible.” Medicare usually pays first when you are dually eligible, and you receive Medicare-covered services. Medicaid usually pays last, after Medicare and any other health insurance you have.
• If you are dually eligible, Medicare covers your prescription drugs. You will automatically be enrolled in a Medicare drug plan that will cover your drug costs instead of Medicaid. Medicaid may still cover some drugs that Medicare doesn’t cover.
• You might be able to still get Medicaid if you meet your state’s resource limit, but your income is determined to be too high to qualify. Some states will let you “spend down” the amount of your income that is above the state’s Medicaid limit. You do this by paying non-covered medical expenses and cost sharing like Medicare premiums and deductibles until your income is lowered to a level that qualifies you for Medicaid.

Virtual and Online Support Groups and Resources

Compassionate Friends: This organization provides support for the loss of a child of any age which includes resources, listings of events and groups. https://www.compassionatefriends.org/
Dougy Center for Grieving Children and Families: The Center provides support which Includes guidance, tip sheets, activities, podcasts, and a variety of toolkits. https://www.dougy.org/
Grief in Common: This forum allows those grieving to create a profile that outlines who you are, who you have lost and the circumstances surrounding that loss. The hope is for the griever to find a connection with someone who understands. https://www.griefincommon.com/
Grieving.com: This is a community of people supporting each other through the loss of a partner, child, other family member or friend.   https://forums.grieving.com/
National Alliance for Children’s Grief (NACG): This organization provides information and support for children and teens grieving a death which includes education and resources. https://nacg.org/
Thanacare: This online resource includes free, 45-minute sessions with advocates available to speak with individuals about the care they wish to receive and provides access to professional support and guidance in the advanced care planning process. https://www.thanacare.com/
The Conversation Project: This guide discusses how to talk with a child living with a serious illness about the health care that is right for them. https://theconversationproject.org/wp-content/uploads/2020/12/PediatricGuide.pdf
The Dinner Party: This is an online community of 21–45-year-olds who have experienced the loss of a parent, partner, child, sibling, other close family member or friend. https://www.thedinnerparty.org/

What is an Advanced Directive?

An advanced directive is a written record that gives your doctor or other healthcare provider(s) information about your personal wishes and what is important to you in the event you are sick and unable to speak for yourself.

Two types of Advanced Directives in Illinois

• Healthcare Power of Attorney: This is a document that defines who the person is that will speak on your behalf regarding your healthcare when you are unable to do so. This is important because if you are too sick or injured to speak for yourself, you need someone you trust to represent you and your wishes.
• Living Will: This is a document that defines what your wishes are regarding medical treatments, what you do and do not want, in the event you cannot speak for yourself. Completing the “Five Wishes” book may be helpful in communicating your healthcare wants and goals.

For more information, please visit https://www.caringinfo.org/wp-content/uploads/Illinois.pdf or https://www.fivewishes.org/ or https://dph.illinois.gov/topics-services/health-care-regulation/nursing-homes/advance-directives.html

What is the POLST Form?

The Practitioner Order for Life-Sustaining Treatment form (POLST) expresses your choices regarding medical decisions if you are unable to speak for yourself. The POLST is different from a living will because it is signed by a doctor and becomes a medical order. While the POLST form is voluntary, the form is important to have if you are seriously ill. The POLST form allows you communicate your wishes with someone you trust and with the health care professionals involved in your care by addressing several critical decisions that may occur at the end of life. The POLST has options regarding:

• Do Not Attempt Resuscitation (DNAR/DNR): This choice states you do NOT want CPR (cardiopulmonary resuscitation) attempted if your heart stops beating.

• Intubation/Ventilation: This choice states whether you want a machine to assist or to do the work of breathing for you, if you are not breathing on your own.
• Medications/IV Fluids – This choice states whether you want certain medications, or IV fluids used to prolong your life.
• Artificial Nutrition: This choice states whether you want nutrition given to you through a tube or IV. This is also known as having a “feeding tube.”
• Comfort-Focused Treatments: This is what people in hospice typically elect, as it focuses on treatments that provide comfort. Care is focused on the primary goal of relief from pain or suffering by using medications or other treatments like oxygen. The focus is to maximize comfort and quality of life.

For more information on the State of Illinois POLST form, please visit: https://www.polstil.org/information-for-individuals-caregivers/

When is a Caregiver Needed?

When people are sick or as they grow older, they may face new challenges with caring for themselves due to physical or mental changes. A decline in their ability to care for themselves does not always necessitate a move to assisted living or to a nursing home, but it does indicate a need for extra help to support a person’s desire to age in place safely. The following are some signs that it may be time to hire a caregiver for your loved one:

• Change or stopping regular activities;
• Poor personal grooming;
• Not taking medications;
• Memory issue/forgetfulness;
• A messy house;
• Bruising/new injuries/falls;
• Not dressing appropriately;
• Difficulty driving;
• Inability to keep up with or pay bills; and/or
• Holding onto furniture and walls to get around the house.

Basic caregiver duties may include:

• Assisting with bathing, grooming, and dressing;
• Doing laundry;
• Preparing meals and shopping for food;
• Doing light housekeeping;
• Managing and monitoring medications;
• Assisting with transportation;
• Assisting with walking and mobility;
• Providing companionship and emotional support; and/or
• Communicating with doctors.

Preventing Falls in the Home

Falling at home can lead to serious injuries – such as cuts, bruises, and even broken bones. To help keep you and your loved one safe, here are some simple steps you can take to help prevent falls.

• Use your assistive device! (walker, cane, etc.)
• Remove any throw rugs.
• Arrange furniture so there is a clear path for walking.
• Wear supportive shoes.
• Avoid wearing just socks or loose slippers.
• Be aware of any side effects from medications such as dizziness, so change position slowly.
• Always keep a phone nearby.
• Improve lighting in the home, for example brighter light bulbs, nightlights, etc.
• Use a “reacher grabber” tool to pick up items from the floor or items out of hand’s reach.
• Add grab bars in your shower and/or tub.
• Use a rubber non-slip mat in your shower and/or tub.
• Clear any wires and cords from walkways.
• Get dressed while sitting down.
• Get up slowly from lying down or sitting and stay sitting if you are feeling dizzy and/or lightheaded.

Mobility and Safe Transfers

Learning how to move and get around your home safely is important, so you do not get hurt. Here are some tips to help keep you safe.

• Change positions slowly especially when getting up from a sitting or lying down position.
• Use small steps to approach the surface to sit on e.g., bed, chair, toilet, etc.
• Reach back to feel the chair seat or armrests with both hands; do not sit unless the surface is located with your hands and you can feel the chair on the back of your legs.
• When rising out of a chair, push up from the chair with both hands; come to a standing position making sure you are steady and have your balance; then put both hands on your walker or cane.
• Know how to use your assistive device safely e.g., cane, walker, wheelchair, etc. If you do not know how to safely use your devices, ask your hospice nurse to show you.
• Ask your hospice nurse about devices that might help you function more safely, such as a walker, a lift, or a bedside commode (portable toilet).

Safety with Eating and Drinking at End of Life

It is normal for a person nearing the end of life to lose their appetite or their desire for food and drink. Here are some important food and drink safety considerations.

• To prevent choking, offer food and fluids only when your loved one is awake, alert, and able to sit up.
• Offer foods of similar consistency as foods with a variety of textures may cause choking. Offer easy to chew foods, if they want to eat.
• When your loved one nears the end of life, giving nutrition or fluids through an IV or a feeding tube may cause discomfort and/or other problems.
• If your loved one is awake, offering ice chips may provide comfort and enjoyment.
• Offer a sippy cup or use a straw if weakness makes it difficult for your loved one to hold a cup.
• Offering food and fluids is fine, but do not pressure or force. Not eating at the end of life is normal and forcing your loved one to eat or drink may cause pain.
• Eating when your loved one is not hungry or unable to eat safely can cause nausea, vomiting and/or choking. If nausea is an issue, serving very small portions of easy-to-swallow foods and liquids may help.
• Provide mouth care at least twice a day, even if your loved one is no longer eating or drinking. If your loved one is sleeping with their mouth open, you can provide oral care as often as every 1-2 hours.

Preventing Infections

Infections occur when germs are spread from one person to another. This commonly happens because of unclean hands, so having clean hands is the best way to prevent infection! Here are some tips on how to prevent infections.

• Wash your hands often, especially before and after providing care for your loved one.
• Use soap and warm water to wash your hands for at least 20 seconds. Singing “Happy Birthday to you” twice through is approximately equal to 20 seconds.
• Rinse hands well and dry with a clean towel or a paper towel.
• Hand sanitizer rubs or sprays may be used if your hands are not visibly soiled.
• Ask visitors to wash their hands before visiting.
• Avoid others who are sick and use a mask if needed.
• Clean and disinfect surfaces in home regularly especially those frequently touched by others.

Skin Care

Skin care is an essential part of providing care for your loved one. Protecting skin from injury or breakdown is important, especially if your loved one is staying in the same position for much of the day and/or has issues with incontinence. Here are some tips for maintaining healthy skin.

• Wash skin with warm water and mild soap.
• Avoid friction or rubbing.
• Cleanse skin after soiling.
• After cleansing, apply moisture barrier creams to areas of skin that are likely to be in contact with moisture such as the buttocks.
• Keep your loved one’s heels off the bed by putting a pillow underneath their calves and knees for support. Your hospice nurse or aide can show you how to position.
• Change your loved one’s position every 2 hours while they are in bed.
• Use pillows to protect your loved one's bony areas, such as heels, elbows, and knees from lengthy periods of pressure to prevent bed sores.
• Keep the head of the bed at a 30-degree angle or less when your loved one is not eating or drinking if comfortable for them.

How To Use an Oxygen Tank

Oxygen therapy can be used to treat symptoms such as shortness of breath and may provide comfort at the end of life. When oxygen is used, it is important to know how to use it safely. Here are some tips for safe oxygen use.

How to Turn On an Oxygen Tank

• Make sure the oxygen tank is secured in an upright stand.
• Use the cylinder wrench or toggle to turn the oxygen cylinder valve by at least a half turn counterclockwise.
• Check the pressure gauge to verify there is enough oxygen in the tank, usually 2,000 psi.
• Adjust liter flow using the dial on the regulator to the correct oxygen flow.

How to Use Oxygen

• Attach tubing with nasal cannula to the oxygen regulator nipple.
• Place the two prongs of the nasal cannula in your loved one’s nostrils. The end of the curved part of the prongs should point downward.
• Loop the tubing over the ears and adjust the tubing so it is comfortable under the chin.
• Use the slider to tighten the tubing, if needed.
• Make sure your loved one is comfortable, and the oxygen is flowing at the correct flow rate by looking at the dial.

How to Turn Off an Oxygen Tank

• Use the cylinder wrench or toggle to turn the cylinder valve clockwise until completely off and closed.

Oxygen Safety Tips

• Keep all oxygen equipment at least 15 feet away from any type of open flame.
• Do not use petroleum-based ointments or lotions in or around your loved one’s nose or lips such as Vaseline or Vicks.
• Do NOT smoke or allow anyone else to smoke while oxygen is in use!
• Post OXYGEN IN USE/NO SMOKING signs wherever oxygen is being used.
• Store canisters in a secure and upright position.
• Store canisters in a well-ventilated cool area away from any heat sources and away from direct sunlight.

Who To Call in an Emergency

Your hospice care team is here to help you in any situation. Call the hospice anytime 24 hours a day/7 days per week. Your hospice team will help you determine what care is needed and what to do next. Call hospice first in the following situations:

• Your loved one falls.
• Any medical equipment failure, service issues, or loss of power.
• Any medication refill needs or questions.
• Any equipment or supply needs such as additional oxygen tanks or depends.
• Any sudden change in your loved one’s condition such as an increase in sleep, no longer responding, a change in eating habits, any new or continued agitation, change or increase in pain, etc.

Call 911 for the following emergency situations:

• To access emergency services such as the police department or fire department.

You always have the right to call 911, but most situations can be managed by your hospice team. If it is necessary to call 911 or go to the hospital, please notify the hospice first, so a team member can contact you or meet with you to discuss treatment options.

What to Do After Your Loved One Dies at Home

The death of a loved one is an emotional experience for the families and caregivers of the person who died. When a loved one dies at home, it is normal to feel overwhelmed and unsure about what to do and who to call. Hospice is here to help and guide you through this experience – every step of the way. Call the hospice first and a hospice nurse will then come to your home to help you. Once the hospice nurse arrives at your home, they will assist with:

• Officially confirming the death of your loved one.
• Washing and preparing your loved one’s body for transportation to the funeral home.
• Calling the funeral home to arrange transportation of your loved one’s body.
• Notifying the county coroner of your loved one’s death.
• Coordinating for the medical equipment to be picked up e.g., hospital bed, mechanical lift, oxygen, etc..
• Notifying the family physician of your loved one’s death.
• Calling any family as requested.
• Providing guidance regarding medication disposal and getting rid of any medical supplies e.g. depends.
• Providing comfort and support to you and your family as needed.
• Contacting additional resources for emotional support for you and your family such as a social worker, chaplain, or bereavement coordinator as needed.

How to Talk to a Loved One Who Is Dying

Saying goodbye to a loved one can be very emotional and difficult, but it is an important part of the grieving process, and possibly an important part of “letting go” for your loved one.  Here are some tips to help you.

• Even if your loved one is no longer awake, or conscious, they may hear your words. Hearing is the last sense to leave a person who is dying.
• Take the time to say what is in your heart. Sharing your feelings with your loved one may provide you with reassurance and peace after they have died.
• Talking and reminiscing around your loved one, even if they are no longer awake, is another way to connect in a meaningful way during their final days or hours of life.

Oral Care

Oral care, also known as mouth care, is an important part of providing care and comfort during the end of life. Oral care should be provided at least daily, or more often when needed. Oral care involves regular, gentle cleaning of the mouth to maintain comfort and prevent infections. Here are some tips to help. Tips for Providing Oral Care:

• Clean the Teeth and Gums: Gently brush teeth, gums, and the tongue with a soft-bristled toothbrush or sponge applicator moistened with cool water. A small amount of toothpaste may also be used if your loved one can spit out excess toothpaste after oral care.
• Remove Debris: Use oral swabs to remove any pieces of food or other debris from the mouth, when possible.
• Hydrate Mouth for Comfort: Offer sips of water or ice chips if your loved one can swallow or you may use a sponge applicator with a small amount of water to moisten their mouth and lips.
• Lip Care: Apply nonpetroleum based lip balm or mouth moisturizer to prevent cracking and dryness.

Providing a Bed Bath

Providing a bed bath for your loved one allows them to maintain dignity and feel cared for during a vulnerable time. While bed baths help your loved one to be clean and prevent skin breakdown, they can also help provide comfort and alleviate anxiety. The following are tips to providing a safe bed bath.

• Wash your hands and put on gloves (if desired)
• Gather supplies: wash basin with warm water, mild soap, 2-3 washcloths and 2-3 towels
• Make sure as you go, cover exposed body parts not being washed with towels to maintain warmth and dignity
• Wash face with washcloth and dry with a towel
• Wash hands with washcloth and dry with a towel
• Wash arms and legs with washcloth and dry with a towel
• Wash chest/stomach with washcloth and dry with a towel
• Turn onto side and wash back with washcloth and dry with a towel
• Wash private parts last and dry with a towel
• Apply any protective creams as needed to area around private parts
• Apply lotion to rest of the body to maintain healthy skin – may provide hand or foot massage during while doing this
• Use dry or waterless shampoo to clean hair
• Gently comb or brush hair (if desired)

Changing an Adult Diaper or Brief in Bed

The following are tips on how to change an adult diaper or brief while your loved one is in bed. These steps help maintain the dignity and comfort of your loved one while ensuring cleanliness and hygiene.

• Gather supplies: disposable diapers/briefs, wet wipes (or washcloth and warm water)
• Wash hands and put on gloves
• If possible, have your loved one roll onto their side, or lift their hips slightly to access the diaper/brief.
• Unfasten tabs of diaper or tear open sides of pullups at the seams
• Gently pull the front of the diaper/brief down, folding it under the bottom
• Use wipes to clean the private parts, moving from front to back
• Roll up the diaper/brief and place it in a garbage bag
• Slide a clean diaper/brief under your loved one while they are on their side or lifted slightly
• Position the diaper as needed for correct fit
• Bring the front of the clean diaper/brief up between your loved one’s legs and secure the tabs snugly but comfortably
• Remove gloves and wash hands thoroughly

Heart Disease

Heart disease refers to several different conditions in which the heart is not working properly. Some of the most common examples of heart disease are Congestive Heart Failure (CHF/HF), Coronary Artery Disease (CAD), and Cardiomyopathy. Heart disease is serious and can eventually be life-limiting. There are many different causes of heart disease, but many of the symptoms are similar. Patients with advanced heart disease may be eligible to benefit from hospice care when they are experiencing any or all the following symptoms:

• Shortness of breath
• Weight loss
• Weight gain (from edema)
• Edema (Swollen legs/ankles/feet)
• Fatigue
• Loss of appetite/nausea
• Unable to care for self
• Chest pain/tightness
• Dizzy/lightheaded

How Can Hospice Help?

When heart disease progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help get these unpleasant symptoms under control such as shortness of breath as well as providing overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments. They will now be treated in the comfort of home.

For more information, please visit:

Heart Failure: https://www.heart.org/-/media/Files/Health-Topics/Answers-by-Heart/What-Is-Heart-Failure.pdf and https://www.heart.org/en/health-topics/heart-failure Coronary Artery Disease: https://www.heart.org/en/health-topics/consumer-healthcare/what-is-cardiovascular-disease/coronary-artery-disease
Cardiomyopathy: https://www.heart.org/en/health-topics/consumer-healthcare/what-is-cardiovascular-disease/coronary-artery-disease

Alzheimer’s Disease

Alzheimer’s Disease is a brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks. Advanced Alzheimer’s Disease is considered an end-of-life illness. Other disorders that directly or indirectly affect the brain and are considered end-of-life illnesses as they progress includes Frontotemporal Dementia, Parkinson’s Disease, Huntington’s Disease, and brain injury i.e., stroke or brain aneurysm/bleed. Patients with Alzheimer’s Disease may be eligible to benefit from hospice care when they start experiencing any or all the following symptoms:

• Weight loss.
• Difficulty swallowing or refusing to eat.
• Inability to speak or communicate meaningfully.
• Unable to recognize who they are, where they are, or

the people around them.

• Incontinent of bowel and bladder.
• Not able to care for self and meet personal care needs
• No longer able to walk or transfer self.
• Mood changes such as anxiety and/or agitation

How Can Hospice Help?

When Alzheimer’s Disease progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help control these unpleasant symptoms, such as anxiety or agitation, and provide overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments. They will now be treated in the comfort of home. For more information, please visit: https://www.alz.org/

Liver Disease

Liver disease impacts a person’s ability to digest food, store energy, and remove waste products from the body. There are many types of liver disease, including diseases caused by viruses such as Hepatitis A, Hepatitis B, and Hepatitis C. Liver disease can also be caused by other factors such as alcohol use, certain medications, and poisons. Liver disease can be serious and life-limiting when it reaches the final stage of the disease. Patients with liver disease may be eligible to benefit from hospice care when they start experiencing any or all the following symptoms:

• Swelling of abdomen (ascites) and legs.
• Bruising easily.
• Changes in the color of the stool and urine.
• Jaundice or yellowing of the skin and eyes.
• Weight loss or weight gain if retaining fluid.
• Nausea and/or vomiting.

How Can Hospice Help?

When liver disease progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help get these unpleasant symptoms under control such as swelling of the abdomen and legs as well as providing overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments. They will now be treated in the comfort of home. For more information, please visit: https://liverfoundation.org/

Cancer

Cancer is a disease caused by the rapid growth of abnormal cells that develop beyond their usual boundaries and invade other parts of the body including other organs. The spread of cancer to other organs is known as metastasis and is the primary cause of death from cancer. Some of the most common primary sites of cancers are breast, lung, colon, prostate, ovarian, skin, pancreas, and stomach. While some cancers can be successfully treated, others can be more serious and eventually life-limiting. Patients with advanced stages of cancer may be eligible to benefit from hospice when treatment is no longer effective and/or the burden of treatment outweighs the potential benefits. Some of the symptoms commonly experienced with cancer includes the following:

• Weight loss
• Pain
• Shortness of breath or feeling breathless
• Swelling in the feet, legs, or hands
• Fatigue
• Loss of appetite/nausea
• Change in bowel habits
• Skin changes such as new sores that will not heal

How Can Hospice Help?

When cancer progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help get these unpleasant symptoms under control such as pain or shortness of breath as well as providing overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments. They will now be treated in the comfort of home. For more information, please visit: https://www.cancer.org/

Lung Disease

Lung disease refers to many different diseases or disorders that prevent the lungs from working properly. Some of the most common lung diseases are: Patients with Lung Disease may be eligible to benefit from hospice care when they start experiencing any or all the following symptoms:

• COPD (Chronic Obstructive Pulmonary Disease)
• Chronic Bronchitis
• Chronic Asthma
• Bronchiectasis
• Lung Cancer
• Emphysema
• Pulmonary Fibrosis
• End-Stage Tuberculosis
• Pulmonary Hypertension
• Sarcoidosis

Patients with Lung Disease may be eligible to benefit from hospice care when they start experiencing any or all the following symptoms:

• Shortness of Breath
• Changes in Mucus Production
• Fevers
• Weight Loss/Loss of Appetite
• Edema
• Worsening Cough
• Fatigue/Tired
• Chest Pain/Tightness
• Dizziness
• Poor Sleep

How Can Hospice Help?

When lung disease progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help get these unpleasant symptoms under control such as shortness of breath as well as providing overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments.  They will now be treated in the comfort of home. For more information, please visit https://www.hospiceinnovations.org/for-patients-families/advanced-lung-care-handbook/

Neurological Diseases

Neurological diseases impact a person’s nervous system, which includes the brain, spinal cord, nerves, and muscles. Some examples of neurological diseases are Parkinson’s disease, Stroke, Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis (MS), Lewy Body Dementia, and Huntington’s Disease. These are all serious, life-limiting conditions that can lead to permanent decline of the nervous system. Patients with neurological diseases may be eligible to benefit from hospice care when they start experiencing any or of the following symptoms:

• Weight loss.
• Nagging cough.
• Shortness of breath.
• Difficulty swallowing.
• Difficulty speaking or softening of the voice.
• Unable to care for self or meet personal care needs.
• Unable to walk or transfer self.
• Incontinent of bowel and bladder.

How Can Hospice Help?

When a neurological disease progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help get these unpleasant symptoms under control such as shortness of breath as well as providing overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments. They will now be treated in the comfort of home.

For more information, please visit:

ALS: https://www.als.org/understanding-als
Parkinsons: https://www.michaeljfox.org/parkinsons-101

Stroke: https://www.stroke.org/en/about-stroke

Multiple Sclerosis: https://mymsaa.org/ms-information/overview/introduction/

Huntington’s Disease: https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/

Chronic Kidney Disease

Chronic Kidney Disease (CKD) is a term used to describe the gradual loss of function of a person’s kidneys. Kidneys play an important role in filtering waste and fluids from the body, which are then eliminated in a person’s urine. When the kidneys are diseased and unable to eliminate this waste, dangerous levels of fluid, electrolytes, and waste can build up in your body. As CKD progresses to the most serious and final stage, treatment options are limited, and the burden of treatment often outweighs the benefits. Patients with Chronic Kidney Disease may be eligible to benefit from hospice care when they start experiencing any or all the following symptoms:

• Weight loss or weight gain from retaining fluid
• Loss of appetite
• Changes in the amount of urine produced usually low to none
• Nausea and vomiting
• Fatigue and weakness
• Sleep problems either unable to sleep or sleeping all the time
• Decreased mental sharpness and/or confusion
• Muscle twitching and cramps

How Can Hospice Help?

When kidney disease progresses into the final or end-stage, symptoms are often more severe and difficult to manage. Hospice can help get these unpleasant symptoms under control such as nausea and vomiting as well as providing overall comfort. Choosing hospice means your loved one will no longer go to the hospital or receive invasive treatments. They will now be treated in the comfort of home.

For more information, please visit: https://www.kidney.org/atoz/content/about-chronic-kidney-disease

Breathing Changes

Breathing changes are common at the end of life. There may be changes in how deep your loved one’s breaths are, how often they take a breath, and/or the pattern of their breathing; all of which are normal changes.

• When patients have moisture, or saliva, at the back of their throat and they are unable to cough or clear the saliva, it makes a “wet” or rattling sound when they breathe. This may sound upsetting, but it rarely causes any discomfort or distress to your loved one.
• Breathing may alternate between being rapid to being slow, shallow, and deep.
• Your loved one may start to breathe with their mouth open as they are dying. This is common and normal even for people who have never been mouth breathers.
• Your loved one may have long pauses between breaths, which are known as periods of “apnea.” These pauses may last for a few seconds up to a minute. As your loved one gets closer to the end of their life, these pauses may become longer.
• Most people have an irregular pattern of breathing in the minutes leading up to death. This is often followed by a brief period of very shallow breaths, before breathing eventually stops and death occurs.

Changes in Bladder and Bowel Function

It is common to have changes in bladder and bowel function as the body goes through the natural process of decline. Here are some of the typical changes that may occur:

• Constipation: This can be caused by a decrease in the intake of food and fluids, a reduction in physical activity, and as a side effect of some medications. It may also be related to the bowel muscles becoming less effective at moving stool.
• Diarrhea: This may occur due to the reduced absorption of fluid into the body’s digestive system. It may also be a side effect of certain medications and/or the body’s inability to process food properly.
• Incontinence: This may occur as the muscles that control bladder and bowel function gradually weaken. It may also occur when your loved one is less awake and/or alert, and therefore unaware of their bowel and bladder functions.
• Reduced urinary output and/or reduced bowel movements: This occurs as food and fluid intake decreases resulting in less waste being produced which then causes less to no urine output and/or fewer bowel movements. Urine may also appear darker in color.
• Urinary retention: This occurs when the bladder is not emptying completely, which can lead to discomfort and risk of infection. Placing a tube called a Foley catheter into the bladder can help empty the bladder and provides comfort.

*If your loved one experiences any of the above symptoms, please let the hospice nurse know so we may assist in keeping your loved one comfortable and to prevent any complications.

Decreased Appetite

Food and nutrition are often seen as a way of providing love. As the end of life nears, it is often very difficult for caregivers to understand or accept their loved one no longer wants or even enjoys foods like they once did.

• It is common for people nearing the end of life to lose their appetite or desire to drink fluids.
• Food and drinks your loved one once enjoyed may no longer taste good.
• It is important to let your loved one decide when he/she wants to eat and drink. Support their decision by letting them know it’s okay to say “no” to food.
• Offer small bites and sips often, but do not pressure your loved one to eat or drink. Focus on small amounts of easy-to-swallow foods and drinks.
• Provide oral care often as this provides comfort and it may help make food taste better.
• As the body’s functions slow down, food is no longer able to be processed. This can cause nausea, vomiting, or even choking if eating is forced.
• Your loved one should always be awake and alert to accept any food or fluids to prevent choking.

Depression

Feelings of grief and sadness often accompany facing the reality of a terminal, or life-limiting diagnosis. These feelings are normal and expected. For many people facing a terminal diagnosis, these normal feelings can evolve into depression.

Signs and Symptoms of Depression

• Mood changes such as sadness, anxiety, feelings of guilt, hopelessness.
• Loss of interest in activities your loved one usually enjoys.
• Changes in sleep patterns such as inability to fall asleep, sleeping too much, sleeping too little, and/or restless sleep.
• Changes in appetite such as loss of appetite or little interest in eating.
• Changes in weight such as weight loss or weight gain.
• Changes in behavior such as crying, irritability, and agitation.
• Changes in thinking such as inability to concentrate, and/or thoughts of suicide.

It is important to recognize when sadness and grief become something more serious. Depression, even in the terminally ill, is treatable. Many symptoms of depression can be like the symptoms of terminal illness, so it is important to talk to your hospice nurse about your concerns. Talking through concerns with a social worker or chaplain can also provide much needed support.

End of Life Confusion

End of life confusion, also known as delirium, may occur as the brain is in the natural shutdown process of dying. This process changes the person’s ability to process thoughts.

Signs and Symptoms of Confusion/Delirium:

• Confusion/disorientation
• Changing levels of consciousness and alertness
• Impaired thoughts and/or inability to focus
• Memory changes i.e., forgetfulness
• Agitation or restlessness
• Hallucinations or delusions
• Anxiety or fearfulness
• Mood changes i.e., irritability
• Insomnia, difficulty falling asleep and/or staying asleep
• Decreased ability to communicate effectively and clearly

End of life confusion can be a distressing part of the dying process, however, there are medications and other interventions that can ease these distressing symptoms. Talk to your hospice nurse about how to best manage these symptoms.

Fatigue and Sleep

At the end of life, people spend more hours of the day sleeping than they do being awake. It is also normal for people to feel very fatigued and weak, and to need help with even the simplest tasks.

• It is easy to be discouraged by seeing your loved one sleep so much, but it is important to remember that this is a natural part of the dying process.
• When your loved one is awake, offer to assist them with tasks to help conserve their energy.
• You can provide comfort to your loved one while they are sleeping through gentle touch, holding hands, or just sitting at their bedside.
• As the end of life draws near, your loved one may gradually become less and less responsive when spoken to or touched and eventually can transition into being totally unresponsive. This is a common and a normal part of the dying process.

Fevers

Fevers at the end of life are very common and may be managed with medications, such as Tylenol, or other comfort-focused measures. A few of the most common reasons fevers occur are:

• Dehydration: As the body goes through the natural shut-down process, dehydration is common and can cause the body temperature to rise.
• Neurological Decline: The hypothalamus, which is the part of the brain that regulates body temperature, becomes less effective at maintaining a normal body temperature.
• Infection: The ability to fight infection weakens as the body shuts down, making people more vulnerable to infections and fevers.

Beyond medications, there are other many other comfort-focused measures that can help manage the discomfort associated with fevers. Here are some of the most effective fever management measures:

• Apply a cool, damp cloth to the forehead, neck and wrists.
• Use fans to circulate the air and help cool your loved one.
• Use lightweight bedding and sheets.
• Adjust the room temperature.

Nausea and Vomiting

Nausea is an uncomfortable feeling in your stomach that makes you feel like you could throw up. Vomiting is simply your body’s own natural way of emptying the contents of your stomach. Nausea and vomiting can have many different causes such illness, motion, side effects of medications, constipation, excessive coughing, and certain foods and smells.

Tips For Managing Nausea/Vomiting

• Suck on ice chips
• Sip on ginger ale or other clear liquids
• Eat small, frequent meals
• Eat foods that are room temperature or cooler
• Sit up during and after eating – at least for 1-2 hours
• Do not force eating
• Keep saltine crackers at the bedside
• Avoid strong odors
• Keep room at a comfortable temperature
• Use a fan to circulate air in the room
• Apply a cool, damp cloth to forehead or back of neck
• Rinse your mouth out after vomiting
• Clean your mouth before and after eating
• Wear loose-fitting clothing

Let your hospice nurse know if you are experiencing nausea or vomiting. Your hospice nurse will discuss other options to manage these distressing symptoms such as medications and/or holistic therapies like aromatherapy.

Oral Secretions

An increase in oral secretions or saliva in the back of the throat is normal for people who are dying. This occurs because people have a decrease in the ability to cough or clear secretions at the end of life. Here are some tips to help manage your loved one’s secretions.

• Medications may be used to assist with drying up secretions, however, they may not be the best answer. Your hospice nurse can provide more information about this option.
• Placing your loved one on their side or tipping their head to the side will help to drain the saliva out of the side of their mouth. Make sure to place a washcloth or towel under the side of their head to absorb the saliva.
• Raising the head of the bed slightly may help to drain or clear the saliva from the back of the throat.
• Suctioning has limited benefits, as it can eventually make the secretions increase.
• It is important to remember when your loved one has “wet” or rattling breathing, they are not experiencing any distress or discomfort. This is a natural part of dying and is more distressing for others to hear than it is for your loved one.

Pain

Pain is the experience of feeling discomfort or suffering. Pain can be a physical sensation, such as achiness, cramps, or even pressure. Pain can also be an emotional experience and can include feelings of fear, anxiety, and distress. However pain is felt, it is unique to the person experiencing it.

Your hospice team can help you manage your pain. To treat pain in the most effective way, the team will ask questions to better understand your pain, such as:

• How bad or intense is the pain?
• Where is the pain?
• Is the pain new?
• How would you describe the pain?
• Does the pain keep you from your normal activities?
• What makes the pain better?
• What makes the pain worse?
• How well is the current medication for pain working?
• Are you having any side effects related to your pain or the pain medication being used?

There are many options available to manage pain. Your hospice team will work with you to determine the best treatment options and to develop a plan to help get relief from both your physical and emotional pain.

Shortness of Breath

“Shortness of breath” is a term used to describe the feeling of being out of breath or not getting enough air when you breathe. It may also feel like you are unable to take a deep enough breath.

What Causes Shortness of Breath?

• Diseases such as cancer, heart disease, or lung disease.
• Anxiety can make you feel short of breath, and shortness of breath can make you feel anxious.
• Exercise or exertion.
• Excessive coughing.
• Body positions that restrict breathing such as poor posture, lying flat on your back, or sleeping on your stomach.
• Increased secretions in the airway.
• Warm, humid weather.

What Can Help Relieve Shortness of Breath?

• Medications such as opioids i.e., Morphine, steroids, nebulizers, and oxygen can all be used to treat shortness of breath.
• Conserve your energy and take frequent breaks to rest.
• Adjust your body position such as lying on your side if able to make breathing easier.
• Try pursing your lips to breathe.
• Adjust your environment to be comfortable and/or utilizing a fan.
• Relax and meditate.
• Know your individual triggers and avoid them when possible.

Let your hospice nurse know if you are experiencing symptoms of shortness of breath. Your team will discuss options to help you manage this distressing symptom, such as medications and/or other interventions.

Skin Temperature and Color Changes

Changes in skin color and temperature are common at the end of life and are usually a sign of the body’s natural shutdown process.

Common Skin Color Changes are:

• Pale skin (Pallor): The skin may appear to be white, lighter than usual, or very ashen. This may be seen throughout the body, or in smaller areas such as the face, hands, and feet.
• Blue-tinged skin (Cyanosis): This is common to see on the lips, inside the mouth, and on the fingernails and/or toenails.
• Blotchy, purplish-red discoloration (Mottling): This is usually seen on the feet and legs, but other areas of the body may have mottling as well.

Common Skin Temperature Changes are:

• Decreased Body Temperature: This may be felt as skin that is cool/cold to the touch effecting the entire body or effecting only smaller areas such as the extremities (legs, feet, hands).
• Intermittent Fevers: This occurs when the body temperature rises above the normal range. Fever episodes may be short, last for several hours, or days. Common symptoms include sweating, chills, and general discomfort. If this occurs, your hospice nurse can advise you on medications, or other measures, that are available to provide comfort.

Symbolic Language/Near Death Awareness

At end of life, the person who is dying may have an awareness death is near. They may use words or talk in a way that may be confusing to others, but it often has meaning for the dying person. This is a very normal and common occurrence at the end of life.

Common Symbolic Language/Near Death Awareness Experiences:

• Your loved one may talk about events from the past. They may also “see” or “talk” to people who have already died.
• Your loved one may talk about leaving or going to another place.
• Your loved one may express the desire to talk about their life and reminisce.
• Your loved one may express the need for forgiveness from others.

Tips for the Caregiver:

• Offer support and be present.
• Pay attention to what your loved one is saying. This may be symbolic of the life they led.
• Being with and watching over your loved one as they near death can be distressing. However, this can also be a very meaningful time letting your loved one know how much you care, and they are not alone.
• “Seeing” or “talking to” loved ones who have already died often provides comfort to the person who is dying.

Terminal Restlessness

Terminal restlessness, also known as terminal agitation, is a state of physical and emotional agitation or distress commonly experienced by patients nearing the end of life. It may occur as the brain is in the natural shutdown process of dying.

Common Symptoms of Terminal Restlessness:

• Agitation or restlessness, unable to sit still
• Confusion or disorientation
• Anxiety
• Involuntary movements or twitching
• Hallucinations or delusions
• Insomnia or restless sleeping
• Moaning, calling out, or yelling
• Attempting to get out of bed repeatedly
• Picking at blanket/clothing
• Resistance to care

Terminal restlessness can be an upsetting part of the dying process, however, there are medications and other interventions that can ease these distressing symptoms. Talk to your hospice nurse about how to best manage these symptoms.

Withdrawal

As a person nears death, they will usually become less “present” and interactive with the people around them. This withdrawal from the world, including family and friends, is a natural part of the dying process.  Here are some tips as your loved one withdraws.

• Watching a loved one withdraw can be difficult. Providing a calm and supportive environment is the best way to care for your loved one during this time.
• When a person starts to withdraw from their physical surroundings, it is thought to be a time that they may be reflecting and processing the emotional and spiritual aspects of dying. Providing a quiet calm environment and being present is the best way to support your loved one during this time.

Aromatherapy

It is well known that certain smells can have a powerful effect on the brain, and therefore the body as well. Aromatherapy involves essential oils (lavender, peppermint, etc.), which help improve a patient’s physical, emotional and spiritual well-being.

Some of the many benefits of aromatherapy are:

• Improves nausea
• Helps control pain
• Reduces anxiety and agitation
• Creates a calm and peaceful environment
• Improves sleep
• Promotes relaxation

Benefits of Integrative Therapies

While medications are often used to treat pain and other common symptoms at end-of-life, integrative therapies such as music therapy, aromatherapy, massage therapy, and pet therapy can also be used to improve symptoms and quality of life.

Some of the many benefits of integrative therapies are:

• Eases symptoms, such as: pain, restlessness, nausea, agitation.
• Decreases anxiety and depression.
• Increases feelings of well-being and comfort.
• Promotes communication and socialization.
• Fosters meaningful sensory experiences.
• Creates positive memories at end-of-life.
• Helps with expression of emotion.
• Improves overall comfort and quality of life.
• Provides relaxation.

Comfort Medications Myths

MYTH: “Everyone on hospice ends up on Morphine, which causes people to die sooner.”

FACT: While the use of Morphine is common in hospice, there are also many other non-opioid medications used to keep you comfortable. Morphine may be needed if these medications are not effective enough by themselves. Morphine is a very effective medication for easing pain and shortness of breath, which are both common symptoms at end-of-life. Morphine does NOT cause death or make it happen any sooner. Morphine simply makes end-of-life more comfortable.

MYTH: “If my loved one takes Morphine, he/she will become addicted to it.”

FACT: Someone who is dealing with a terminal illness and is experiencing pain and/or shortness of breath does not typically form an addiction to Morphine or any other opioids. The benefits of Morphine greatly outweigh any unpleasant side effects such as increased sleepiness, nausea, or itching which usually clear up within days of starting these medications.

Increasing a patient’s comfort and enhancing quality of life are the main goals of hospice care. One of the most important comfort measures hospices provide is through the use of different medications – all aimed at relieving common end-of-life symptoms such as pain, shortness of breath, anxiety, and nausea.

The following is a list of the most commonly used comfort-focused medications in hospice care, the symptoms they treat, and how they are administered.

1. Acetaminophen (Tylenol)

Purpose: Acetaminophen is a very commonly used hospice medication. It can be given by mouth (as a pill or tablet) or as a rectal suppository. Acetaminophen is gentle on the stomach and tolerated well by most people. It is commonly prescribed for mild to moderate pain, general discomfort, headaches, and fevers. It can also be used alongside stronger pain medications to help reduce overall pain without increasing sedation.

Possible Side Effects: May cause nausea.

2. Morphine (Roxanol)

Purpose: Morphine is one of the most widely used medications in hospice. It helps manage moderate to severe pain and can also ease shortness of breath, both of which are common symptoms near the end of life. It is usually given by mouth or sublingually (under the tongue).

Possible Side Effects: May cause drowsiness, constipation, nausea, and/or itching. ** It is important to talk to your hospice provider about these possible side effects, as most are temporary and can be prevented.

Important considerations:

• Side effects typically decrease after 2-3 days and can be managed with other medications or interventions, if needed.
• Morphine does NOT cause death to happen sooner. This is a common misconception about this medication.
• Addiction is rare when used to treat symptoms.
• The dose can be increased safely as needed to effectively manage pain and/or shortness of breath symptoms.
• Pain is best managed before it becomes severe. “Staying ahead” of pain is the best way to manage it effectively.

3. Hydromorphone (Dilaudid)

Purpose: Hydromorphone is another powerful opioid, similar to morphine, but often used when morphine isn’t well-tolerated or effective. It is typically used for moderate to severe pain and can also ease shortness of breath, both of which are common symptoms near the end of life. It is usually given by mouth or sublingually (under the tongue).

Possible Side Effects: May cause drowsiness, constipation, nausea, and/or itching. ** It is important to talk to your hospice provider about these possible side effects, as most are temporary and can be prevented.

Important considerations:

• Side effects typically decrease after 2-3 days and can be managed with other medications or interventions, if needed.
• Hydromorphine does NOT cause death to happen sooner. This is a common misconception about this medication.
• Addiction is rare when used to treat symptoms.
• The dose can be increased safely as needed to effectively manage pain and/or shortness of breath symptoms.
• Pain is best managed before it becomes severe. “Staying ahead” of pain is the best way to manage it effectively.

4. Lorazepam (Ativan)

Purpose: Lorazepam is a medication that is commonly used to help calm anxiety, agitation, and restlessness. It is also effective in easing shortness of breath. It is usually given by mouth or sublingually (under the tongue).

Possible Side Effects: May cause drowsiness.

5. Haloperidol (Haldol)

Purpose: Haloperidol is a medication commonly used in hospice to treat agitation and restlessness. It is also effective for managing nausea. It is usually given by mouth or sublingually (under the tongue).

Possible Side Effects: May cause drowsiness, dry mouth, and/or constipation. ** It is important to talk to your hospice provider about these possible side effects, as most are temporary and can be prevented.

6. Bisacodyl (Dulcolax)

Purpose: Bisacodyl is a medication commonly used in hospice to prevent and/or treat constipation. Bisacodyl is a stimulant laxative that helps keep bowel movements regular and comfortable. It is usually given by mouth or as a rectal suppository.

Possible Side Effects: May cause abdominal cramping and/ or diarrhea.

How to Administer Medications

Taking medications or providing medications to your loved one is an important job. Your hospice nurse will provide you with detailed instructions regarding all medications that might be used to provide comfort and manage symptoms. Medications can be given in a variety of ways. The following is a list of the most common ways to administer medications.

By mouth (oral) – Oral medications can be in the form of pills, capsules, or liquids. Most pills and capsules can be swallowed with water or other liquids. The best way to take pills or capsules by mouth is to sit upright, place medication on tongue, drink a small amount of fluid, and swallow. Liquid medications can be given by using a syringe or a medication measuring cup.

Inside cheek (buccal) – Some liquid medications are given inside the mouth by the side or inner lining of the cheek called the buccal mucosa. This is used when a person has difficulty swallowing or they are not awake enough to swallow safely. A syringe is usually used to administer liquid medication into the buccal mucosa.

Under the tongue (sublingual) – This can be used with pills or tablets that dissolve. Dissolving pills can be placed under the tongue, and they will “melt” or absorb within a brief period. Liquids given under the tongue will usually be administered by a syringe.

Rectal route – This route may be used for certain medications typically in the form of a suppository especially if taking medications by mouth is difficult or unsafe. The person will be laying down in a comfortable position on their left side. The medication or suppository is inserted into the rectum. Your hospice nurse will instruct you on how to do this safely and properly.

Skin (transdermal) – This is typically in the form of a patch or cream. Follow the directions for each specific medication, as the site where to apply on the body may differ. Make sure the skin is clean and dry when applying a cream or patch.

By inhalation (can be through mouth or nose) – This can be in the form of oxygen being delivered through a nasal canula (through the nose) or a mask (over the mouth). This can also be a nebulizer treatment, which provides medications inhaled through a mouthpiece. There are special precautions that need to be in place with oxygen. Your hospice nurse will instruct you on how to use this safely and properly.

How to Crush Medications

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

1. Wash your hands with soap and water or use hand sanitizer. Try not to touch the medication with your bare hands, wear gloves, if possible.
2. To crush the medication, use either a pill crusher or the back of a metal spoon and a small bowl.
3. Crush the medication, then put all the contents into a small bowl or cup.
4. Draw up 0.5 to 2 mL (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 medication in the bowl. Mix the crushed medication and water together until the medication is dissolved.
6. Draw up the dissolved mixture into the syringe. With the tip of the syringe in the mixture, pull up slowly on the plunger to “draw up” the liquid.
7. Have the person sit up or raise the head of the bed up to at least a 30-degree angle.
8. Slowly dispense all the dissolved medication into the mouth on the tongue (if they are awake and can swallow), under the tongue, or in the side of the mouth/cheek. Check with your hospice nurse on the best route for administering medication.

How to Dispose of Unused Medications

When medications are no longer needed or being used, it is important to consider how to dispose of or get rid of them in a safe way. While hospice team members are not able to take medications out of the home for you, they can assist you with finding a safe way to dispose of medications that are no longer needed.

To dispose of medications in your household trash:

• Remove medications from their original container and mix them with undesirable substances such as coffee grounds, cat litter, or even dirt. If you have liquid medications, these can be poured out into an unused depends to be absorbed.
• Put the mixture or depends into a sealed container (zip lock bag, tied up plastic grocery bag, etc.).
• Throw sealed container into the garbage.

There are many local medication disposal sites that are available. For a list of medication disposal sites in Illinois, please visit:

https://medtakebackillinois.org/

How to Draw up Liquid Medications with a Syringe

Liquid medications are often given with an oral syringe. An oral syringe has specific measurement lines that are used to ensure the right amount, or dose, of medication is being “drawn up” into the syringe. The steps for using an oral syringe are as follows:

1. Wash your hands. Make sure you have the right medication bottle.
2. Gently roll the medication bottle between your hands to ensure the medication is mixed well.
3. Remove the cap from the bottle. Insert the bottle syringe adapter, if available.
4. Insert the tip of the oral syringe into the syringe adapter.
5. If using a syringe adapter, turn the bottle upside down and gently pull the plunger of the syringe until the medication reaches the correct amount. The top of the plunger should be at the measurement line to draw up the correct dose.
6. If you aren’t using a syringe adapter, hold the bottle in your hand or place it on a table. Insert the tip of the oral syringe into the bottle and gently pull up the plunger to the appropriate measurement line.
7. Turn the syringe so the tip is pointing toward the ceiling.
8. Tap the syringe to move the air bubbles to the top of the syringe.
9. Slowly push the plunger until any big air bubbles are gone. The top of the plunger should be at the correct measurement line.

Music Therapy

Music can improve quality of life and a person’s overall sense of well-being. Music therapy benefits not only the person but also their families and caregivers.

Some of the many benefits of music therapy are:

• Promotes pain relief.
• Promotes relaxation.
• Helps with expression of emotions.
• Increases feelings of meaning and purpose.
• Improves comfort.
• Increases feelings of closeness and acceptance.
• Promotes an environment to help resolve family conflict and stress.
• Promotes a sense of spiritual support.
• Fosters meaningful sensory experiences.
• Creates positive memories at the end of life.

Pet Therapy

Pet therapy involves the use of trained animals, usually dogs, to provide comfort, companionship, and emotional support to patients with serious or life-limiting illnesses. Pet therapy has been shown to have many benefits for persons at end-of-life.

Some of the many benefits of pet therapy are:

• Provides pain relief.
• Reduces anxiety and depression.
• Promotes relaxation.
• Promotes overall improvement in mood and emotional well-being.
• Reduces feelings of isolation and loneliness.
• Encourages communication and socialization.
• Provides joy and comfort.
• Reduces emotional stress.

Understanding Anxiety and Agitation

Anxiety and agitation are common behaviors that can appear as the brain struggles to process the world. Your loved one may pace, fidget, ask repeated questions, or seem restless. These behaviors are not deliberate; they are signals that something feels overwhelming or unsafe to them. Loud noises, unfamiliar surroundings, fatigue, or even too many choices can create distress. Sometimes agitation stems from physical discomfort such as pain, hunger, or needing the restroom.

Tips for Caregivers

• Stay Calm and Reassuring: Use a gentle voice, steady eye contact, and relaxed body language. Your calmness can help reduce their fear.
• Simplify the Environment: Limit clutter, noise, or overstimulation. A quiet, familiar space often brings comfort.
• Offer Comfort and Routine: Predictable schedules and familiar activities provide a sense of security.
• Redirect with Purpose: Engage the person in soothing activities like folding laundry, listening to music, or taking a short walk.
• Address Triggers and Check for Basic Needs: Sometimes a snack, a drink of water, or using the bathroom is all that’s needed to ease agitation.

Final Thoughts

It is important to remember that anxiety and agitation are a behaviors associated with dementia — not a reflection of who the person is or who you are as a caregiver. By approaching these moments with patience and compassion, you can bring comfort and help them feel safe.

Understanding Hallucinations

Hallucinations occur when changes in the brain alter how sights and sounds are processed. They are often linked to changes in the brain caused by dementia. They may also be triggered by poor lighting, infections, medication side effects, or fatigue. Your loved one may see people, animals, or objects that aren’t present, or hear voices or other noises that don’t exist. Hallucinations can be unsettling for both the person experiencing them as well as for the caregivers who witness them.

Tips for Caregivers

• Stay Calm and Reassuring: Instead of telling your loved one that what they see or hear isn’t real, acknowledge their feelings: “That sounds scary, but you’re safe here.” Dismissing or arguing about their experience can increase distress.
• Adjust the Environment: Reduce shadows, improve lighting, and remove distracting patterns or mirrors that may cause confusion.
• Redirect Gently: Shift focus with a soothing activity: play calming music, look through a photo album, give them a comforting object, or involve them in a simple task like folding laundry.
• Assess Triggers: Keep notes on when hallucinations occur. Report patterns to healthcare providers, as hallucinations may be worsened by infections, dehydration, or medication side effects.
• Encourage Routine and Predictability: Structured daily activities reduce anxiety, which may lessen hallucinations.
• Prioritize Safety: If hallucinations cause unsafe behaviors, gently redirect them to a safe space and remove any potential hazards.

Final Thoughts

When hallucinations occur, it is important to remember that they can feel very real and even frightening to the person experiencing them. By staying calm and offering gentle reassurance, you can provide a sense of safety that can help ease the fear that often accompanies the hallucinations.

Understanding Depression in Dementia

As dementia progresses, the brain changes in ways that affect mood, motivation, and emotions. Feelings of loss, confusion, or frustration may contribute to sadness. Social isolation, pain, or lack of stimulation can also play a role. These changes can be difficult to see — but understanding what’s happening and how to respond can make a difference.

Tips for Caregivers

• Encourage Connection: Gently involve your loved one in social interactions, even brief visits with friends, family, or support groups.
• Maintain Routine: Familiar daily schedules provide stability and reduce stress.
• Promote Enjoyable Activities: Focus on simple, meaningful tasks—listening to music, looking through photos, gardening, or short walks.
• Offer Emotional Support: Sit with them, hold their hand, and use reassuring words. Sometimes quiet companionship is the most powerful comfort.
• Involve Medical Professionals: Talk with your healthcare team if you notice signs of depression. There are treatments available - such as medications and therapy.

Final Thoughts

Depression can be difficult for both the person with dementia and the caregiver. It’s important to remember there are effective treatments available. By seeking help when needed and practicing self-care, you’ll be better able to provide the support your loved one needs.

Understanding Repetition

One of the most common — and often most frustrating — behaviors caregivers experience in someone with dementia is repetition. This might come in the form of asking the same question over and over, telling the same story repeatedly, or performing the same action multiple times a day. While it can be challenging to manage, repetition is a symptom of the disease, not a deliberate act.

Repetition in dementia often stems from memory loss and confusion. A person may not remember asking a question five minutes ago, or they may lose track of recent conversations entirely. Repeating stories or actions can also be a source of comfort when the world around them feels unpredictable or unfamiliar. In some cases, repetition can be a signal that the person is feeling anxious, bored, or uncertain, and it is their way of expressing these emotions.

Tips for Caregivers

1. Stay Calm and Patient
   Reassure yourself that the repetition is not intentional. Getting frustrated won’t help them — or you. Take a deep breath before responding.
2. Gently Redirect
   If a question keeps coming up, answer it calmly and try to shift their attention to a different activity, like looking at a photo album or taking a short walk.
3. Provide Reassurance
   Often, repetition comes from a need for reassurance. Simple, soothing responses — “You’re safe here,” or “Everything is okay” — can ease their anxiety.
4. Look for Patterns
   Notice when and where repetition happens. Are they more repetitive in the evening? When they’re tired or hungry? Understanding the pattern can help you anticipate and reduce triggers.
5. Use Visual Aids
   For frequently asked questions — like “What day is it?” or “When are we eating?” — consider placing a whiteboard or a calendar in a visible area as a helpful reference.

Final Thoughts

Repetition can wear on even the most compassionate caregiver. Make sure to take regular breaks, seek support and accept help from family and/or friends, and prioritize your own well-being. You’re doing incredibly important — and difficult — work.

While repetition is a hallmark of dementia, it’s also an opportunity to practice patience, compassion, and creativity. Every repeated question is a chance to connect, to comfort, and to understand what your loved one might be feeling beneath the surface. They may not remember the question — but they will remember how you made them feel.

Understanding Sleep Issues and Sundowning

Caring for someone with dementia often means navigating challenging behaviors — and sleep disturbances are among the most exhausting. Many caregivers notice their loved one becomes more restless, confused, or agitated in the late afternoon or evening. This phenomenon, known as sundowning, can make nights especially difficult. Some of the most common sleep problems include trouble falling asleep, frequent waking during the night, and excessive daytime sleepiness or napping.

There’s no single cause for sleep issues and sundowning, but possible reasons include changes in the brain’s internal clock, reduced lighting and increased shadows in the evening, fatigue from the day’s activities, unmet needs like hunger, pain, or needing the bathroom, and/or disrupted sleep-wake cycles.

Tips for Caregivers

1. Stick to a Routine
   A consistent daily schedule helps reduce confusion. Keep wake-up times, meals, and bedtimes the same every day.
2. Maximize Daytime Light
   Exposure to natural sunlight during the day can help reset the body’s internal clock.
3. Limit Stimulants
   Avoid caffeine, sugar, and heavy meals in the late afternoon and evening.
4. Create a Calm Evening Environment
   Reduce noise, avoid overstimulation, and keep things quiet and predictable. Calming music, a warm blanket, or a favorite activity can help ease the transition to bedtime.
5. Encourage Gentle Activity During the Day
   Too much daytime napping or inactivity can make nighttime rest harder. A short walk or simple activity can help use up excess energy.
6. Reassure, Don’t Argue
   If confusion or agitation arises, stay calm. Offer reassurance and redirect rather than trying to explain or correct.
7. Ensure Safety at Night
   Install nightlights, remove trip hazards, and consider motion sensors or monitors if wandering is a concern.

Final Thoughts

Sundowning and sleep issues can disrupt your own rest and lead to caregiver burnout. Whenever possible, ask for help from family, friends, respite care services, and/or support groups. Understanding why these behaviors happen — and what you can do — can make a big difference for both you and the person you’re caring for.

Understanding Suspicion and Delusions

Dementia affects memory, reasoning, and perception. As the brain struggles to make sense of the world, suspicions and delusional thinking may start to occur. Lost items may become “stolen”, forgotten conversations never happened, unfamiliar faces (even loved ones) feel threatening, and/or gaps in memory may be filled in with made-up stories or beliefs.

Suspicion often shows up as unfounded beliefs that someone is doing something wrong — like hiding belongings or talking behind their back. Delusions are false beliefs that aren't based in reality — such as believing a spouse is an imposter, that someone is stealing, or that people are in the house when no one is there. These behaviors are symptoms of the disease — not a reflection of your relationship or the care you are providing.

Tips for Caregivers

1. Don’t Take It Personally
   Remember that this is the disease talking, not your loved one. Accusations can be hurtful, but they aren’t intentional.
2. Stay Calm and Reassuring
   Arguing or trying to convince them they’re wrong usually only creates more suspicion. Instead, offer gentle reassurance: “I understand how that is upsetting to you. Let’s look for your wallet together.”
3. Redirect and Distract
   If possible, shift the focus to a different activity — a snack, music, or a favorite photo album.
4. Create a Sense of Security
   Keep familiar items visible, label drawers or cabinets, and maintain a predictable routine to reduce anxiety and confusion.
5. Use Validation, Not Correction
   Instead of “No one’s stealing from you,” try validating their feelings. Saying something like “You’re feeling worried about your things. Let’s make sure everything is in the right place” may be more effective.

Final Thoughts

Suspicion and delusions are difficult parts of dementia — both for the person with dementia and for the people caring for them. It is important to remember that they are symptoms, not personal attacks or a reflection on the care being provided. Responding with calm, compassion, and flexibility can ease the tension and protect your relationship.

Understanding Wandering

Wandering is one of the most concerning behaviors caregivers deal with when supporting someone with dementia. A person may leave the house unexpectedly, pace for long periods, or try to "go home” —even if they’re already there. While wandering can be frightening, it’s also common, especially in the middle and later stages of dementia.

Wandering is often caused by a need the person can’t express clearly. Some of the most common reasons for wandering are confusion about where they are and what time it is, following past routines (like going for a walk or commuting to work), restlessness or boredom, looking for something or someone familiar, and/or feeling anxious or fearful.

Caregiver Tips

1. Be Aware of Signs Someone May Be at Risk of Wandering
   Even before someone wanders, there may be signs such as trying to “go home” when already there, talking about needing to go to work, pacing or fidgeting, attempting to open doors to leave.
2. Create a Safe, Structured Environment
   Maintain a daily routine to reduce confusion and restlessness. Keep the environment calm, familiar, and engaging.
3. Secure Exits Thoughtfully
   Consider using childproof doorknob covers, door alarms, or motion sensors. Placing a dark mat in front of the door or painting it the same color as the wall may discourage exit attempts.
4. Keep Keys and Shoes Out of Sight
   These can be visual cues that trigger the urge to leave.
5. Provide Safe Ways to Move
   Regular walks or gentle physical activity can satisfy the need to move, helping prevent restlessness.
6. Use Identification Tools
   Make sure your loved one wears an ID bracelet or medical alert tag. You might also consider GPS tracking devices designed for dementia care.
7. Alert Neighbors and Local Support
   Let trusted neighbors or nearby friends know about the situation in case your loved one leaves home unexpectedly.

Final Thoughts

Wandering is a symptom of dementia, often caused by a need the person can’t clearly express. By understanding the triggers for wandering and taking steps to prevent it, you can help keep your loved one safe while giving yourself greater peace of mind.