By Emmanuel Hospice
Beyond the telltale tremors, stiffness and slow or involuntary movements, Parkinson’s disease can cause a slew of symptoms that impact quality of life.
While it can vary for every person, this neurodegenerative disorder can cause everything from dementia, depression and anxiety to insomnia, hallucinations and blood pressure changes.
“It can be an ugly disease that feels so unfair to the patient and their loved ones,” says Julie Chambers, a nurse case manager with Emmanuel Hospice. “It can affect a lot of things in our daily lives that we take for granted like walking, feeding ourselves and recognizing our loved ones. We also often see social isolation and feelings of embarrassment or frustration take root as these symptoms develop.”
While medications are available to lessen symptoms, there is no cure or therapy to stop or slow the progression. Swallowing difficulties that can cause aspiration and pneumonia, as well as the risk of falling become of particular concern in the advanced stages.
With November being National Hospice and Palliative Care Month, Chambers wants to educate the community on how hospice can help with this and other life-limiting diseases. Hospice services can enhance quality of life, support caregivers and help keep patients at home.
Working in collaboration with the patient’s neurologist, Chambers says hospice can help manage Parkinson’s symptoms and provide additional support to give more peace of mind to everyone involved.
“We work closely with the neurologists sharing the goal of keeping patients comfortable,” she says. “We agree, ‘it’s not my patient, it’s our patient.’ We keep each other updated while navigating changes in the patient’s needs.”
Beyond medication management, Chambers says hospice can bring in practical items that help people with Parkinson’s be more independent and safer in their own home while receiving end-of-life care. This may include specialized walkers, Hoyer lifts, weighted utensils, bed and chair alarms, bedside commodes, fall mats and adjustable hospital beds.
Another benefit of hospice for Parkinson’s patients includes in-home support with the help of aides who can assist with activities of daily living that can become difficult like bathing, dressing, eating and using the bathroom.
People with Parkinson’s may become restless in the middle of the night or otherwise have difficulty sleeping. This can result in a potential fall and other concerns at any hour. While not all hospices offer 24-hour support, Emmanuel Hospice has a full-time extended care team of nurses who work around the clock to help answer questions over the phone and can see patients for any urgent medical needs on nights and weekends.
The nonprofit also offers complementary therapies and services that can help lessen pain and loosen muscles, such as massage therapy, acupressure and acupuncture. Pet visitors, volunteers and art activities also are used to bring emotional support, joy and companionship to patients who may have withdrawn from social functions as symptoms worsened. Essential oils can be used to bring peace with calming scents and a relaxing rotation of lights.
Supporting family members who often overlook their own health and wellbeing while taking care of a seriously ill loved one is just as important to the hospice care team, Chambers says.
“We can bring in additional emotional support through our grief support team, understanding that feelings of loss start long before the patient passes away,” she says. “This helps loved ones process everything they’re going through and learn about stress reduction and self-care.”
Parkinson’s can bring on sudden and drastic health changes and sometimes severe psychosis in patients that can be distressing to the family, Chambers adds.
“In these times, I like to assure families there’s little our team hasn’t seen before. We come in calm and ready to help with any situation” she says. “Our services are designed to support the mind, body and spirit through all the changes that can come from this disease through the end of life.”
For more information, call 616-719-0919, or visit EmmanuelHospice.org.
