Parkinson’s disease is a movement disorder that requires long-term care. The disease progresses over time. This means symptoms change the longer someone has Parkinson’s.
If someone has reached the stage of having advanced Parkinson’s, their signs and symptoms have become severe and greatly impact their quality of life. This typically requires a caregiver (often a family member) to help them with their daily activities, such as eating, dressing, bathing, sleeping, and even moving around the house.
Caregivers tending to loved ones with advanced Parkinson’s need to be equipped for the changes involved as the disease progresses.
Many MyParkinsonsTeam members who serve as caregivers for a loved one with Parkinson’s disease report challenges. One MyParkinsonsTeam member said, “My husband has had Parkinson’s for over 25 years. He is at stage four. For over a month, he has been seeing things that are not there. … We don’t share a room anymore. We haven’t for about three months. The reason is because he has very vivid dreams.”
Another member commented, “I’m caring for my husband. … Each day, there is something new and different to deal with.”
If people with advanced Parkinson’s need health care support, then so do their caregivers. This article serves as a caregiver’s guide and provides information about:
Researchers and neurologists do not fully agree about the definition of advanced Parkinson’s disease. However, one study reports that people with advanced Parkinson’s often have the following in common:
If your loved one has advanced Parkinson’s disease, there are treatment options for managing their symptoms.
During a medical appointment, a neurologist may change the timing or dosage of their medications. They may add other treatments as well. Here are some options the doctor may recommend:
Specialists may suggest device-assisted therapy for those with advanced Parkinson’s disease. Device-assisted therapy involves three main treatments:
Despite altering the dosage of existing Parkinson’s medications — or adding new medications — people with advanced Parkinson’s may still have difficulty walking or keeping their balance. For this reason, movement can be a vital part of therapy.
One study showed that exercise and movement training improved balance in people with Parkinson’s. Another study on people with mild to moderate Parkinson’s showed that both resistance exercises and tai chi can lower the risk of falling.
Ask your doctor which exercises might be appropriate for your loved one’s level of symptoms.
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Parkinson’s caregiver stress is real, and it can go along with taking care of someone with advanced Parkinson’s disease. It is vital that caregivers be able to spot warning signs that they have reached caregiver fatigue. These include:
Members of MyParkinsonsTeam often struggle with caregiver’s guilt. “My wife fell yesterday while I was showering, and I couldn’t hear her calls for help,” one member wrote. “Thankfully, she was just bruised. Felt guilty for not being there.”
Another said, “You do what you have to do for their care and your own self-care. One person can’t do it all. Don’t feel guilty.”
The Parkinson’s Foundation acknowledges that caregivers need to also take care of themselves. Parkinson’s disease caregivers can contact the Parkinson’s Foundation Helpline to find information about local support groups and resources by calling 800-473-4636.
Caregivers can also build a self-care plan. Having a plan can help you set aside time to take care of yourself. Remember to include:
You are more likely to be able to provide high-quality care for others if you’re taking care of yourself as well.
MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 90,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.
Are you caring for someone with Parkinson’s disease? Share your experience in the comments below, or start a conversation by posting on your Activities page.