The goal of hospice services is to provide a quality, peaceful death while allowing the person with Parkinson Disease to remain in a familiar environment such as their home, assisted living or long-term care facility. Hospice provides ongoing education related to caring for a loved at home. It can be overwhelming to care for a loved one that is no longer able to do the things that they normally were able to do in the earlier stages of the disease. Unfortunately, in the later stages of PD patients eventually lose the ability to care for themselves and require assistance with most activities of daily living. Some families struggle seeing their loved ones deteriorate and often feel helpless as PD symptoms are irreversible. Unfortunately, there is no cure for PD but certain medications have been approved to help with symptoms and slow down the progression of the disease.
Some of these earlier symptoms can be managed with medications and therapy. Physical therapy can help in the earlier stages of the disease and can help people with Parkinson’s maintain some independence. As PD progress we see symptoms such as shuffled gait which can cause risk for falls and injuries, uncontrolled tremors that prevent people with PD from doing simple things such as feeding themselves and other independent activities. People with Parkinson’s are aware of the disease and its progression. People that I have care for with PD have told me that they feel trapped in their bodies. They want to do things and struggle because their minds are intact, but their bodies have failed them. They have good stories to tell, yet even their speech becomes impaired.
Symptoms seen in the later stages of the disease can include, immobility, difficulty swallowing causing weight loss and malnutrition, unintelligible speech, and even difficulty breathing. The Hospice care team can help with those cares and the Registered nurse educates family on how to provide that care and help manage those symptoms. Hospice nurses are experts at providing comfort care at end of life and work together with the patients and their families to develop a plan of care specific to each patient’s needs whether it is pain management, fall prevention, aspiration precautions, or ongoing education. SW and Chaplains develop a plan of care also specific to the patient and family’s needs whether to make final arrangements or provide support to help with the acceptance of the final stages of the disease. Hospice care can provide valuable bereavement services for caregivers and families while on service or after a loved one passes away.