Helping Loved Ones With Parkinson's
Parkinson's disease is a neurodegenerative disorder that progresses over time and affects a person's movement, balance and muscle flexibility. Currently, about 1 million people in the United States and 10 million worldwide are known to have Parkinson's, which robs the brain of dopaminergic neurons that send important signals to the body's nerve cells.
Parkinson's disease is complex, yet commonalities exist in how the chronic condition presents in individual patients and carries over into the supportive circle of family or informal caregivers - the spouses, parents, children, close relatives and friends who step in to care for their ill loved one.
Common Challenges for Parkinson's Caregivers
Parkinson's caregivers tirelessly extend love, compassion and time to serve the needs of their Parkinson's person, but the dedication can strain a caregiver's own physical, emotional, psychological and financial health. Common challenges for Parkinson's caregivers include:
- Feeling overwhelmed with responsibility.
- Social isolation.
- Anxiety, depression and grief.
- Fears about future care needs and the disease's progression.
"Caregiving for a loved one with Parkinson's can be enriching as patients and their families draw closer together, but there will be good and bad days," said Heather Lantry, Owner and General Manager of Right at Home North Shore/Chicago Metro. "Parkinson's is a challenging disease to stay ahead of and manage, and many family caregivers wonder, 'What if I can't handle everything my loved one needs?' Fortunately, there are a number of resources and support options to help."
Lantry recommends the following tips for Parkinson's family caregivers to help restore equilibrium in their own lives and in daily caregiving routines:
Acknowledge your conflicted feelings.
Feeling sad or incapable at times is OK. When intense emotions build, it's important to take a breather and bring things back into the present moment.
Know your limits.
Allow yourself to be human and realize that you will not always deliver perfect care. Some days will feel a bit more off-balance. Be realistic on what you can and cannot do in your caregiving role.
Build in leisure time and playtime.
Being intentional about respite care is important for the long-term success in caring for a loved one with Parkinson's disease.Do not neglect downtime and opportunities to socialize with others. The practice of deep breathing and mindfulness is another solution in quieting a stressed brain and body.
Foster a team of support and community.
Recognize your need for help and accept help regularly. Show your vulnerability and ask for assistance with the more challenging responsibilities. Lean on other family members and caring friends and neighbors. As a loved one's Parkinson's advances, in-home professional care and assistance can ease the family's care load by helping to prevent falls, assisting with bathing and dressing, and overseeing nutritional intake. A strong caregiving team can help a person living with Parkinson's remain safely at home longer and with a greater quality of life.
Guard your own health.
Family caregivers are at greater risk for elevated blood pressure, higher insulin levels and cardiovascular disease. Stress levels often rise with the day-to-day demands of caregiving. It is imperative that you continue your own physical checkups and health maintenance goals.
Parkinson's Support Groups.
Support groups for both patients living with Parkinson's and their family caregivers are effective avenues for walking through the ups and downs of the disease with others. The groups can vary in size from large, formal gatherings to more relaxed get-togethers. The group format may range from special speakers on specific Parkinson's topics to small group discussions that exchange tips and information. Some support groups are divided into the stages of the disease's progression while others are set up for only family caregivers. Online and virtual support groups and forums can also help alleviate the social isolation that living with Parkinson's can present. To find a support group that best fits your preferences, check with your neurologist or treating physician, local hospitals, and chapter-based Parkinson's programs.
Nationwide Parkinson's Resources.
Every year, approximately 60,000 people in the United States are diagnosed with Parkinson's disease, and most of these individuals are older than age 60. Parkinson's disease organizations like the Parkinson's Foundation make life better for people with Parkinson's by improving care and advancing research toward a cure. The Parkinson's Foundation believes in educating and empowering people with Parkinson's through providing resources and programs that bring the Parkinson's community together.