It’s a very emotional time when a loved one goes into hospice. Whether the need for hospice has been obvious for a long time, or the need rose suddenly, it can feel overwhelming and sad. Not only is it hard to see a loved one nearing the end of life, but caregiving for a hospice patient can also be emotionally and physically demanding, especially if your loved one receives hospice care at home.

At the end of life, people often experience physical, cognitive, and/or emotional changes. For instance, your loved one may lose their faculties, struggling to perform everyday tasks that were once performed without a second thought. However, it’s vital that you help your loved one maintain the highest quality of life possible, with as much dignity as possible.

To ease the strain of caregiving for a hospice patient, it’s important to learn about hospice care at home before deciding when and where to enter hospice care. While it’s impossible to prepare for the process (there can be a lot of emotional twists and turns), having a good idea of what to expect and having some practical tools, strategies, and a communication plan can ease things a bit.

Caregiving for a hospice patient: Practical tools.

Fortunately, you can rent, purchase, or borrow tools that will make your role of caregiver easier while helping your loved one be more comfortable. Importantly, your insurance company may cover the cost of needed items, so talk to your hospice provider and/or check your loved one’s policy before making a purchase.

Depending on the needs of your loved one, you may want the following items:

Hospital bed.

People in hospice care often spend a lot of time in bed. Spending large amounts of time in a regular bed can be very uncomfortable and awkward. An adjustable hospital bed, on the other hand, makes it easier to sit up for meals and other activities. Without a doubt, adjustable beds make prolonged time in bed easier and more comfortable.

Adjustable height bedside table.

If your loved one spends most of their time in bed, an adjustable height “hospital” table on wheels can provide easy access to everything needed, such as food, water, a telephone, and tissues.

Shower chair.

Unsurprisingly, helping your loved one stay clean can help him/her feel better. If your loved one cannot stand in the shower, a shower chair can make it possible for him/her to safely enjoy time in the shower.

However, it’s important to realize that many people with cognitive impairment find bathing stressful. For instance, studies found that 20-40% of nursing home residents with cognitive impairment displayed aggressive or agitated behaviors such as hitting, kicking, and screaming while bathing. Furthermore, many remained upset for hours after the bath.

Wheelchair.

If your loved one can no longer walk without help, a wheelchair can be a lifesaver. Not only will a wheelchair make it easier for you to move your loved one around the home, it can also allow your loved one to get outdoors to enjoy some fresh air.

Devices to relieve pain.

Despite the best efforts by you and others, your loved one may feel pain and discomfort. Fortunately, inexpensive fixes like extra pillows can improve comfort and reduce pain. Additionally, massagers can ease pain but be careful if your loved one’s skin is fragile and/or prone to damage.

To avoid painful pressure sores, consider providing the following items:

A foam or air mattress specifically designed to prevent pressure sores.
A seat cushion for your loved one’s chair that is designed to evenly distributes pressure if he/she will sit for prolonged periods.

Caregiving for a hospice patient: Help your loved one remain comfortable.

In addition to the items described above, the following tips can make your loved one more comfortable:

Make sure your loved one spends most of their time in a room with:
- Plenty of natural light, so they can see and feel the sun throughout the day.
- Minimal exposure to streetlights that could keep them up at night.
- Plenty of fresh air, which is generally more comfortable than a stuffy room.
- A comfortable temperature by providing ample heat in the winter and adequate air conditioning in the summer.
Keep their room clean, with fresh linens as needed. Similarly, keep the shower, sink, toilet, and bathroom floor clean.
Surround your loved one with items that will provide comfort, such as favorite photos, stuffed animals, or other mementos.
Play soft music, keeping your loved one’s preferences in mind.
Dim the lights during periods of rest.
Keep the room pleasant smelling by removing odorous trash immediately. Additionally, candles or essential oils can make a room smell pleasant but keep your loved one’s preferences and sensitivities to scents in mind.

Importantly, take the following steps to reduce the risk of pressure sores:

Make sure your loved one’s position doesn’t put pressure on skin that is red or discolored.
Avoid placing hot water bottles or heating pads on red or discolored skin.
Remove bedpans and soiled undergarments/incontinence products as soon as possible after use.
Make sure your loved one doesn’t sit or lie on tubing or medical equipment.

For more tips, read The Dangers of Pressure Sores.

Caregiving for a hospice patient: Effective communication with your loved one.

Your loved one probably helped you through a lot of rough times throughout your life. Now it’s your turn to repay the favor, even if they’ve reached a point where they don’t even realize you’re there.

If your loved one cannot understand you, communication can be unspoken. Sitting by his/her side, holding your loved one’s hand, can foster a meaningful connection as he/she senses your love and attention.

Importantly, try to have regular conversations with your loved one. If you cannot physically be present, video calls, texts, and emails can reduce any feelings of loneliness your loved one may be experiencing.

Consider these communication tips:

Show respect.

Importantly, show your loved one respect each time you communicate. Avoid belittling or embarrassing your loved one. Instead, speak to your loved one the way you would like to be spoken to if the roles were reversed.

Show patience.

Depending on the illness, your loved one may have a hard time speaking clearly. Be patient and attentive. Show that you’re listening. If you don’t understand what he/she says, politely ask them to repeat the information. If needed, talk to a speech therapist or other member of your hospice team about tools you and your loved one can use to communicate.

Remain calm when faced with agitation.

Your loved one may experience anger, hostility, or confusion throughout his/her time in hospice. Or, your loved one may develop “terminal agitation” – anxious, restless, or distressed behaviors that occur in the days or hours before death.

If your loved one expresses any kind of agitation, speak calmly, softly, and clearly. Tell him/her you’re present. And consider telling your loved one it’s okay to “let go” when he/she feels ready.

Be clear.

Your loved one might not comprehend everything like they used to. Therefore, it’s important for you to speak as clearly as possible to them using simple language. But don’t speak to them like they’re a child.

Don’t burden your loved one with your emotions.

This is a hard time for everyone involved. Try to find other outlets for your emotions – whether you’re sad, frustrated, or overwhelmed – don’t burden them.

Let your loved one speak their mind.

If your loved wants to talk about something that is too sad or off-putting to you, let him/her. This is about your loved one, not you.

Be present.

This is supposed to be a time between you and your loved one. It’s not supposed to be between you, your loved one, and your phone. Although you have other demands in your life, make sure you spend a reasonable chunk of time each day giving your loved one your full attention.

Insist on respectful communication from everyone.

Importantly, make sure aides and other helpers also communicate respectfully and properly with your loved one. Don’t hesitate to provide guidance and point out communication issues if you detect problems. If someone doesn’t treat your loved one with respect, it is likely time to find other options.

Caregiving for a hospice patient: Respect your loved one’s boundaries.

Before you share details of your loved one’s condition, make sure your loved one is okay with you sharing details. Respect their confidentiality.

And when friends and family express a desire to visit, be explicit about “house rules”. For instance, long visits may be too exhausting for your loved one, so you may choose to limit visits to one hour. And if your loved one doesn’t want a certain person to visit, honor their wishes.

Caregiving for a hospice patient: Stress-relief strategies.

Caregiving for a hospice patient is often emotional and physically overwhelming. It’s hard to watch your loved one inch closer to death. And you might feel that you are not getting the physical and/or emotional support you need. Unsurprisingly, you may need to blow off steam to de-stress.

Since prolonged stress is unhealthy, it’s important to find ways to reduce your stress. Consider these stress reduction strategies:

Eat well.

Try to eat food that provides energy and nutrients necessary to fuel each day. Additionally, consider eating the following foods which can reduce stress:

Fish
Poultry
Fruits
Vegetables
Whole grains
Healthy fats

Moreover, the following foods help combat stress by lowering your cortisol:

Foods high in vitamin B.
Foods high in omega-3 fatty acid.
Magnesium-rich food.
Protein-rich foods.
Gut-healthy foods.

Regular exercise.

It’s important for you to stay healthy throughout this journey. Exercising, such as walking, running, or going to the gym can reduce your stress, calm your mind, and improve your overall health.

Meditate.

Practicing meditation in a quiet area of your home can reframe your mind and reduce your stress. You can sit and listen to quiet music, use a meditation app, practice deep breathing, or any other technique that calms you. Don’t dismiss how something simple can help you de-stress.

Realize your own boundaries.

Depending on your personality, you may enjoy plenty of company or you may feel overwhelmed when friends and relatives visit. Of course, you must balance your preferences with the needs and desires of your loved one.

Make some time for yourself.

Although you may feel guilty stepping away from your loved one, try to find time for yourself. Even if it’s only 30 minutes a day, relaxing alone or participating in an activity that brings you joy can reenergize you. If your loved one cannot stay alone, ask a friend, family member, or hospice volunteer to relieve you.

Prepare for the future.

Caregiving for a hospice patient involves a whirlwind of emotions. Additionally, you may have to arrange for things in both the near and far future. For example, you must prepare for funerals and other end-of-life rituals. And you must prepare for a life ahead without your loved one.

Conclusion.

Caregiving for a hospice patient is overwhelming and exhausting. Don’t feel like a failure if you feel like it’s too much. Importantly, it’s okay to ask for help. It’s okay to seek advice. And it’s okay to be grieving throughout, even while your loved one is still alive.

However, if you use the above tools, communicate well, and use stress reduction strategies, you and your family will manage as best as can be expected. You’ll also know you helped your loved one at a very difficult time, doing the best you could, which should bring you some peace.

Learn more….

Knowledge is power. Learn more about ways to help yourself and your loved one while you’re caregiving for a hospice patient:

I wrote this in collaboration with Brandon Heritz, a compassionate hospice caregiver at Appling Hospice Care, where he provides end-of-life care with dedication and empathy. With a background in nursing and a special focus on palliative support, Brandon helps patients and their families navigate the challenges of terminal illness with grace and understanding.

Caregiving for a Hospice Patient: Practical Tools, Effective Communication, and Stress-Relief Strategies