One-on-One with Caregiving Experts
Caregiver Monday Talks with Susan C. Imke, Certified Gerontological Nurse Practitioner
Could you briefly tell us about yourself and your experience in helping caregivers?
I specialize in neurological conditions that affect older adults. My primary focus for over 20 years has been to help meet the needs of patients and families who live with Parkinson disease (PD) and related disorders.
How do you help caregivers?
First of all, I think we best help people one at a time: allowing enough time with caregivers to “listen between the lines”; discern primary concerns, unmet needs, and perceived limitations to providing the best help for a loved one with PD.
Why do caregivers often neglect their own health?
The 24/7 routine of caring for a person with the physical and cognitive challenges of Parkinson’s disease can leave caregivers preoccupied with “getting the job done right” day after day. It can be a challenge to care for yourself when you’re just hoping for a decent night’s sleep!
We also live in a culture that rewards self deprecation and deprivation: “giving to others” gets more points than “taking care of self”. Caregiving responsibilities can sometimes become a “noble excuse” for not doing things we kind of dread anyway, like going to the dentist, scheduling a mammogram or carving our time for exercise.
Why should caregivers set aside time on Monday to recharge themselves?
Why not?! Designating a regular “time away” day helps both caregiver and care recipient acknowledge that it is both needed and appropriate to have some time apart. Using Monday can help ensure that there is a planned time for the caregiver to take a “mental health break” without being overridden by other concerns or priorities.
I suggest to caregivers that they identify one hour per day, one day per week, and one week-end per month when they will claim that personal time out, respite-from-the-daily-grind, and plan ahead to make that happen in a dependable and affordable way.
What is the most valuable advice you can offer someone who is caring for a loved one with Parkinson’s disease?
First, learn all you can from reputable sources about the diagnosis and medications to treat the disease in a relatively short time-frame after diagnosis (for instance, one year). This will make all the difference in you and your person with Parkinson disease (PWP) being full players on your healthcare team. Second, as symptoms of the disease progress to mid-stage PD, starting identifying and training your “Team B”; people in your circle of friends and family that will provide that regular respite care so necessary to you and the overall well-being of your PWP. Think of it as the “It Takes a Village” approach.
Where can Parkinson’s caregivers go for help on the web?
National Parkinson Foundation: www.parkinson.org
American Parkinson Disease Association: www.apdaparkinson.org
Parkinson’s Health: www.parkinsonshealth.com
Family Caregiver Alliance: www.caregiver.org