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 care 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 health care provider or to your Agrace care team, if applicable. They will help you come up with a plan to get you feeling better.

Ask your primary doctor or hospice 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. Here is a printable medication tracker and guide for how to give these medications.

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

Safely disposing of unneeded medications will prevent harm to children or pets who might take them accidentally—or to others who might take them illegally.

Ask your doctor or 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 donation programs, such as this one
• Drug “take-back” and disposal programs—read about some options on the Wisconsin DHS website here 
• Proper disposal in household trash (usually mixed into coffee grounds or cat litter)
• 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:

• Use a rigid container that cannot be punctured and has a secure lid or cap, such as an empty laundry detergent bottle (hospice patients can ask their Agrace team to bring a sharps container).
• Write “sharps” or “biohazard” on the container, and store it out of reach of children, pets and others who do not need access.
• 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). Transport the container in the trunk or another enclosed part of your vehicle.

More information can be found on the Wisconsin DHS site here, and on the Wisconsin DNR website: Managing household medical sharps | | Wisconsin DNR.

Pain Medication Side Effects

For families of Agrace patients, our social workers can help you find resources in your community to support your needs. You can also explore these sources:

• An Aging and Disability Center (ADRC) serves each Wisconsin county. You can talk with ADRC staff about the kinds of resources and support available to local elders or people living with a disability. The ADRC staff can also help you determine if you/your loved ones qualify for financial benefits and programs such as long-term care options.
  • Find your county’s ADRC here.
  • See resources available in Dane County here.
• United Way 211 is a simple way to find a variety of local resources. Find services for Wisconsin caregivers here.

You may find these sites helpful if you are caring for a loved one with one of these life-altering illnesses:

ALS Association (ALSA)

Muscular Dystrophy Association

Alzheimer’s Association

Wisconsin Dept of Health Services Support for People Dementia

American Cancer Society

American Heart Association

American Stroke Association

Huntington’s Disease Society of America

National Kidney Foundation

Wisconsin Parkinson’s Association

Here are links to the full text of Agrace Hospice Care’s Patient & Family Care Handbook:   In English   In Spanish

Please copy a link and send it to your family members who live elsewhere, or anyone else who is going through a hospice experience and could benefit from knowing what to expect.

Caregiving is hard work. Watching your loved one decline is physically, emotionally and mentally draining. It is important to take time for yourself, to meet your needs.

The links below may help you, and your Agrace care team can provide support for you as you navigate this difficult and often emotional time.

• Taking Care of YOU:  Self-care for Family Caregivers, from the Family Caregiver Alliance
• Suggested book list for family caregivers
• AARP Caregiving: Family caregiving advice from AARP (American Association of Retired Persons)
• Caregiver Action Network: Family caregiver advice
• CaringInfo Program, a service of the National Hospice Palliative Care Organization (NHPCO), which helps you make informed decisions about care and services related to serious or life-limiting illnesses

The life changes and losses that may come with a life-limiting illness can have a lasting impact on people’s mental health and emotional and spiritual well-being.

The links below offer information that may help you. Agrace’s patients and their families can also turn to am Agrace social worker and spiritual & grief counselor for emotional support.

• Agrace grief support
• Agrace spiritual support
• National Hotline for Mental Health Crises and Suicide Prevention

Do you need caregiving support beyond what you and your Agrace team can do? Finding and hiring extra help—or finding a place to live that offers caregiving—can be challenging. Many people do not know where to start.

Below are links that may help you with these tasks. You can also talk with an Agrace social worker for advice on these matters and any of the services listed here.

• Agrace Adult Day Center:  A safe, engaging place in Madison for seniors (including those with dementia/cognitive decline) to spend weekdays. A respite for families whose elders cannot or choose not to spend the day home alone.
• Agrace Age at Home: Nonmedical, in-home assistance (up to 24 hours a day), for residents of Dane County. Services include personal care, housekeeping, cooking, errands, companionship and much more.
• Medicare’s Care Compare: Find and compare the ratings of long-term facilities and home health providers that accept Medicare, to help you make an informed decision.
• Hospice respite care (caregiver relief) for Agrace Hospice Care patients who live at home (not in a care facility). Depending on benefits available through your insurance, you may qualify for respite support; please ask your Agrace care team about making the necessary arrangements.
• Agrace’s Hospice Residence or Memory Care Suites: Agrace has a limited number of private-pay rooms available for our hospice patients to live while they receive hospice care (and specialized memory care, if needed). Here is the application for both options.

Hiring an agency is a personal decision and a business relationship between yourself/your family and care provider of your choice. Below are questions you may want to ask of the agencies you consider hiring:

1. Does your agency conduct a criminal background check of its workers?
2. What are your rates, and what forms of payment do you accept?
3. Is there a minimum number of hours per visit?
4. Will I see the same caregiver each time?
5. Do you provide someone else to fill in if my usual caregiver is ill?
6. Who do I contact if I have questions or concerns?

Caring for someone with a life-limiting illness often raises complex questions about insurance, finances, legal matters and benefits. In addition to the state and national resources linked below, Agrace social workers can offer more guidance, information, and resources.

• Aging: Family Caregiver Support Programs | Wisconsin Department of Health Services
• Wisconsin Family and Medical Leave Act (FMLA)
• The Family and Medical Leave Act | U.S. Department of Labor (dol.gov)

• Wisconsin Medicaid application: This joint federal and state program provides high-quality health care coverage, long-term care, and other services and financial support to Wisconsin residents who meet eligibility guidelines.
• Social Security survivor benefits: Social Security survivors’ benefits are paid to widows, widowers and dependents of eligible workers. This benefit is especially important for young families with children when one of the parents is dying.
• VA Burial Benefits and Memorial Items: Department of Veterans Affairs’ burial benefits can help service members, veterans and their family members plan and pay for a burial or memorial service in a VA national cemetery.
• Wisconsin Guardianship Support Center: Get information and assistance on issues related to adult guardianship, protective placement, advance directives and more.
• ABC for Health, Inc.:  Advocacy & Benefits Counseling for Health is a non-profit organization created to help guide you through applying for Medicaid and other insurance challenges.

Agrace will pick up the durable medical equipment (DME) we supplied to our hospice patients (walkers, wheelchairs and hospital beds, etc.) when you no longer need it. If an item is yours to keep, your team will let you know. We cannot accept donations of other used medical equipment. Agrace may accept unopened packages of adult briefs (such as Depends®); please call your care team to pick them up.

Agrace thrift stores will take donated lift chairs that are clean and in good condition for resale.

To donate or recycle other equipment and supplies, please check these options:

• Places to donate equipment in southern Wisconsin (list by county)
• Wisconsin Medical Project 
• Sharing Resources Worldwide (SRW)