How to support a loved one with Parkinson’s
Parkinson’s disease is a neurodegenerative disorder whose symptoms often develop slowly over many years. If you are a family member of the nearly 60 000 Americans diagnosed with Parkinson’s disease every year, you might feel overwhelmed. But remember, you are not alone.
Parkinson’s disease is traumatic because it takes away your loved one’s independence. They need additional help and support to maintain their quality of life and keep active. Since the disease also affects the whole family, relationships with friends, and engagement in the community, it can be difficult for everyone involved.
Are you wondering what you can do to support your loved one with Parkinson’s? Here are some practical things to think about.
Be Honest with Each Other
Now is the best time to start an honest and loving conversation with each other. It is the first conversation of many to understand what everyone’s needs are. Just because a loved one has Parkinson’s disease does not mean they are suddenly unable to think or do for themselves. Pre-planning who will handle what needs, and plans for future care may be helpful as having a plan in place can often reduce stress on everyone involved. If your loved one isn’t ready for that conversation yet, respect their wishes and bring it up at a later date. This can be an overwhelming time and everyone will process it differently.
Parkinson’s is a disease that develops differently for each person. Educate yourself by reading materials or watching videos that help you understand the disease and its likely progression. Get this information from as many reliable sources as possible, like the Parkinson’s Foundation.
As a neurodegenerative disorder, Parkinson’s disease may have symptoms that are movement-related (motor) and unrelated to movement (non-motor). Movement-related symptoms can include rigid limbs, tremors, shuffling, lack of balance, or a slow and awkward gait. Non-motor symptoms include depression, fatigue, cognitive impairment, constipation, sleep behavior disorders, and hallucinations. The non-motor symptoms sometimes affect a loved one more than the motor symptoms.
Attend Doctors’ Appointments
Attend doctor’s appointments with your loved one, even when they can get themselves there. Symptoms, moods, and abilities sometimes change so subtly that your loved one might not even realize there is a difference.
Make notes of the changes you observe and any complaints or concerns your loved one shares. Share this information at the doctor’s appointment and ask questions about any concerns or changes you don’t understand.. To promote communication and lessen stress levels, use a calendar to track doctor’s and therapy appointments, medications, and their side effects.
Because the progression of Parkinson’s disease is slow and inconsistent, a loved one’s symptoms may vary from day to day. When a loved one struggles to perform a task that they easily completed another day, be patient. Don’t step in and do it for them unless they ask for help.
Be flexible with your program and tasks. If you are going to do errands and your loved one is having a bad day, stay at home. Speak with family and discuss the possibility and timing of letting someone else take over tasks from you or your loved one.
Be Sure Medications Are Taken
Medicines for Parkinson’s, and their dosages, vary depending on a person’s needs and metabolism. For the medications to work effectively, they must be taken consistently. Discuss medication schedules with your loved one and agree on the best tool to serve as a reminder, whether a smartphone or wall calendar. Adapt the tool until both of you are happy with the routine.
It is normal if you feel overwhelmed as the family caregiver. The best gift you can give your loved one is to take care of your own mental and physical health. Make time to do something you enjoy. Have lunch with friends, go for a long walk or just sit in the sunshine. And remember, it is ok to ask for help and accept it.
For more information, or if you have any questions on how to support a loved one with Parkinson’s, please contact our team at UMC today. We look forward to hearing from you.