When someone you love is extremely sick and needs hospice care, you may feel scared, sad, or angry. You may not know what to do or how to help them. You are not alone. Many people go through this challenging time.
As a hospice nurse, I have met many families with loved ones in hospice. Some are continually active and involved in their care. They ask questions, make decisions, and speak up for their needs. Others are more passive and trusting. They let the doctors, nurses, and staff do whatever they think is best. They don’t say much or ask for anything.
Who do you think gets better care for their loved ones? The active ones or the passive ones?
You may think both get the same care, but that is not always true. Sometimes, the passive ones miss essential things that could make their loved ones more comfortable and happier. For example, some medicines are only given when needed, not always. These medicines can help with pain, anxiety, or allergies. But if the family doesn’t tell the staff when their loved one needs them, they may not get them in time or at all.
This can happen because some places are hectic and don’t have enough staff. They may not check on the patients as often as they should. They may not notice the signs that someone needs more help. They may not have time to talk to the family and explain everything.
That is why it is so crucial for you to be active and involved in your loved one’s care. You know them better than anyone. You know what they like and don’t like. You know what makes them feel better or worse. You have the right to ask questions, make choices, and speak up for them. You are their voice and their advocate.
Being an advocate means caring for someone and wanting their best. It doesn’t mean being rude or bossy. It means being respectful and firm. It means working with the staff, not against them. It means communicating clearly and kindly.
When you are an advocate, you help your loved one get the best care possible. You also allow yourself feel more in control and less helpless. You show your love and support in a powerful way.
If you are a hospice patient or have a loved one on hospice, please remember that your voice matters. You are not alone. You have the right to speak up and advocate. You can make a difference in your loved one’s life.
