Caring for a home hospice patient can be both rewarding and challenging, but for most of us, we feel like there are a lot of things we don’t know how to do for our loved one! We may feel like we are in over our heads, or feel afraid that we will mess something up or not know how to handle a particular symptom or problem.

As a caregiver, you'll likely encounter various symptoms that your loved one may experience. Understanding these common symptoms and knowing how to manage them can help you provide comfort and maintain your loved one's quality of life, and having an idea of what to look for ahead of time can help give you peace of mind and more confidence. Let's explore some of these symptoms and discuss practical ways to address them.

Pain

Pain is often a primary concern in hospice care. Your loved one's comfort is paramount, and effective pain management is crucial. Work closely with the hospice team to develop a pain management plan. This might include scheduled medications, as-needed doses for breakthrough pain, and non-pharmaceutical approaches like gentle massage or cold/hot compresses. Don't hesitate to communicate with the hospice nurse if you feel the current pain management strategy isn't effective. Remember, staying ahead of pain is often easier than trying to catch up once it becomes severe.

Shortness of Breath

Shortness of breath or dyspnea can be distressing for both the patient and caregiver. Elevating the head of the bed, using a fan to circulate air, or opening a window can often provide relief. In some cases, oxygen therapy may be prescribed. Relaxation techniques, like guided imagery or slow, deep breathing exercises, can also help. If your loved one is anxious about their breathing, your calm presence and reassurance can be incredibly soothing.

Fatigue

Fatigue is common in hospice patients and can fluctuate from day to day. Encourage rest periods throughout the day, but also support your loved one in doing activities they enjoy when they have the energy. This might mean reading together, listening to music, or simply sitting outside for fresh air. Prioritize activities that bring joy and meaning, and be flexible with schedules to accommodate varying energy levels.

Appetite Loss / Changes

Appetite loss and changes in eating habits are normal as the body's needs change. Don't force food, but offer small, frequent meals of favorite foods when your loved one is interested. Focus on hydration, offering small sips of water or ice chips. Sometimes, simply moistening the mouth with a damp sponge can provide comfort. Remember, decreased appetite is a natural part of the dying process, and forcing food can cause discomfort.

Nausea and Vomiting

Nausea and vomiting can be distressing symptoms. Work with the hospice team to identify potential causes and manage them with appropriate medications. Simple measures like offering ginger tea, avoiding strong odors, and providing cool, moist cloths for the forehead can also help. Ensure your loved one is positioned comfortably, usually with the head elevated, to minimize nausea.

Confusion

Confusion or delirium can be challenging to manage and may be distressing for family members. Maintain a calm, quiet environment and use gentle reminders about time, place, and who's present. Avoid arguing or trying to force reality orientation. Instead, focus on providing reassurance and comfort. If confusion is new or worsening, alert the hospice team as it could indicate an underlying issue that needs addressing.

Bed Sores and Other Skin Problems

Skin problems, including dryness and pressure sores, can develop as mobility decreases. Regular, gentle repositioning can help prevent pressure sores. Keep the skin clean and moisturized, and use pillows or specialized cushions to relieve pressure on bony areas. If you notice any skin changes, inform the hospice nurse promptly.

Anxiety and Depression

Anxiety and depression are common emotional symptoms in hospice patients. Your presence and companionship are powerful comforts. Encourage your loved one to express their feelings and listen without judgment. Simple activities like looking at photo albums, telling stories, or discussing cherished memories can provide emotional support. The hospice team may also suggest counseling or medications if these symptoms are severe.

Consipation

Constipation is a frequent issue, often exacerbated by medications and decreased activity. Ensure adequate fluid intake if possible, and work with the hospice team to establish a bowel regimen. This might include stool softeners, laxatives, or gentle abdominal massage.

Remember, every patient's journey is unique, and symptoms can vary widely. The key is to work closely with your hospice team, communicate changes promptly, and focus on providing comfort and dignity. Don't be afraid to ask questions or seek support – that's what the hospice team is there for. Your loving care, combined with professional support, can make a world of difference in managing symptoms and ensuring your loved one's comfort during this important time.