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What to Expect

Find out answers to your PD questions

Every caregiver will experience aspects of the disease they didn’t expect. And every caregiver has questions, such as:

• What will my husband be like in 5 years?
• How will this affect our family life?
• Will my wife die from Parkinson’s?

There are no easy answers but what you can do to help yourself and your loved one is to be educated. It's important not to neglect your own needs and make sure you use all the available help and support. You are not alone!

One of the most important things you can do for your loved one is take care of yourself. If you are under too much stress, are not eating right, not exercising or aren’t spending time with friends, you won’t be able to take care of your loved one.

Caregiving in the early years: How does your family adapt to the diagnosis?

A common reaction of the patient and primary caregiver, often misclassified as “denial”, is really more like a state of “overwhelm”.

• How can the doctor know for sure?
• Shouldn’t tests be run? (there are no definitive lab or imaging tests for PD)
• Should we get a second opinion? (in many cases, yes!)
• Consult with an experienced caregiver

All of these are valid questions. But as the work-up proceeds, and you begin your initial research into this diagnosis and what it may mean for the future, a seasoned caregiver can be most helpful to your family and the person with PD by:

• Providing reassurance that this chronic health condition is highly “livable”, only slowly progressive in most patients, and does not shorten life expectancy.
• Taking the lead in obtaining a second opinion from a neurologist who has completed a fellowship in movement disorders (if such is not the case with whoever made the original diagnosis).
• Ordering “beginner” level educational literature such as NPF manuals, “What You and Your Family Need to Know”, and “Medications for PD” booklets.

• Exploring whether there is a Parkinson’s support group in your area to learn more about the condition from other patients and caregivers.

Caring for someone with Parkinson's

The symptoms of Parkinson’s change over time and the care you provide may also need to change.
In the early stages of Parkinson's, life may not be much affected at all. Later on, as the condition develops, you may need to make changes in your day-to-day life.
Getting as much information as you can about Parkinson's can help you understand what kind of care is required and how to manage the treatment of Parkinson's.

Talking to medical and social service providers can also help you plan for the future.

Remember to:

• Encourage your loved one to lead as active and as normal a life as possible.
• Allow them to do things for themselves, even if it takes longer.
• Take into account that Parkinson’s changes a lot and the amount of help they need will vary, not just day-to-day, but hour-to-hour. At one time they might be able to do everything, then the next they’ll need more help or rest.
• Ask what help they want from you.
• Don’t worry if you sometimes get it wrong.

Make sure you have the support you need to help you cope.