Parkinson’s Awareness Month has put a spotlight on this progressive neurological disease. While physicians and researchers push for progress toward a cure, more than one million Americans live with the daily challenges of Parkinson’s, which can range from mild tremors and trouble walking to hallucinations and the need for round-the-clock help.
If you’re a family caregiver for a parent with Parkinson’s, or if you recently found out that someone you love has the disease, here are some expert recommendations for helping your loved one enjoy the best possible quality of life.
Paula Wiener is a Parkinson’s Disease Information Specialist for the Parkinson’s Foundation Helpline. She came to the role with a background in geriatric social work and helping people with movement disorders. For the past dozen years, Wiener has taken calls from family members, friends and patients who have questions about Parkinson’s caregiving, need help finding support or simply need to get a few things off their chest so they can focus on caregiving.
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Here’s how she suggests family members can help a loved one or senior parent with Parkinson’s:
For families coping with a new diagnosis of Parkinson’s, Wiener suggests seeking out a movement disorder specialist and following the doctor’s exercise recommendations to maintain mobility for as long as possible. At every stage, “it’s important to get good information about your loved one’s medications, treatments, and possible side effects” so you know what to expect in terms of behavioral and physical changes.
A local support group can put you in touch with your fellow family caregivers to share stories, support and tips. Part of Wiener’s work is helping callers find out if there are Parkinson’s-specific support groups in their area. They’re not available everywhere, she said, but those that do exist can give you specific insights into how to care for a parent with Parkinson’s. You can search for Parkinson’s resources near you with the Parkinson’s Foundation zip code tool or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO.
The slower pace of daily life with Parkinson’s and the changing nature of Parkinson’s patients’ abilities can make planning a challenge — all on top of the normal challenges of daily life and your relationship with the person you’re caring for. It’s important that caregivers have an appropriate outlet for their feelings, Wiener said. “People call us to say the things that they can’t say elsewhere. We listen to their story, and sometimes that’s all they need.”
Caregiving begins with the recognition that your loved one needs help and the acceptance that they may not want help yet. Wiener said adult children often call the helpline because they’re worried about their mother, who’s doing all the caregiving for their father. In those cases, Wiener suggests framing the suggestion of extra help as good for the father’s well-being, too. “You can ask, ‘if something happens to you, who will take care of him?’” Sometimes, though, “you have to wait for the crisis” and be ready to help when it becomes clear to your parents that they need more assistance.
One big piece of advice Wiener shared is to focus on your first relationship role with your loved one, whether that’s adult child, sibling or spouse. “If there are funds, you can hire people to do the care tasks that come with caregiving. That frees you up to enjoy the time you have with your loved one, doing things that you would normally do.”
Wiener said knowing how Parkinson’s can affect motor skills from day to day can help caregivers maintain their patience and be supportive. “A big issue for caregivers is that their loved one can put their socks on one day but not the next. They’re not being stubborn. You’ll feel much differently about the situation if you realize that it’s just part of living with Parkinson’s disease.” To help your loved one maintain their autonomy as long as possible, “allow them to do what they can do for themselves that day” and understand that they may accomplish tasks more slowly than in the past.
For more advice on helping a loved one or parent with Parkinson’s, Wiener recommended “Coping & Caring: A Caregiver’s Guide to Parkinson’s Disease” to guide you through the caregiving process. You can download the 180-page workbook to print at home or order a free hard copy on the Parkinson’s Foundation website.
What other tips for helping a senior parent with Parkinson’s do you have to share? We’d like to hear your suggestions in the comments below.