When the Caregiver Takes a Break

Erika Stratmann is a Washington, D.C.-based advocate for the 50+ population and the Parkinson's community. Connect with her on Twitter @eureekay to share your connection to Parkinson’s, and for tweets with information and resources on these topics and more! 5 Tips on Providing Respite Care

Since Dad’s diagnosis of Parkinson’s disease over a decade ago, he’s braved tremors, falls, pain and brain surgery (Deep Brain Stimulation). I’ve always admired my father, but even more so as he faces daily challenges with fortitude and, more often than not, good humor. 
As New Jersey Senator Cory Booker wrote, Parkinson’s takes a toll on families too. It’s difficult to see a loved one endure the challenges of the disease, and sometimes it is hard to know how to help. Respite care, short-term relief for those providing care, is a way that one can offer a tangible service. It’s something I can do and that feels good, but ultimately it’s not about me - it’s about Dad. 

Right by my father’s side, every step of the way, is my mother. Nurturing to the core, the role of caregiver is second nature for her, but sometimes Mom needs a break and she deserves time for herself. That’s why respite care is important. 

Respite care provides an opportunity for the caregiver to take a hiatus – an afternoon to relax, a time to catch up on errands, or in the case of my Mom a Girls Weekend trip to New York City with her gal pals. I also like to think of respite care as an opportunity for the individual receiving care to have enjoyable, new experiences. In any healthy relationship, a little time away from each other is good. It’s fun to share what’s happened while apart, and have a dialogue outside of the normal conversation. 

While Dad is still quite independent, being home alone for three days held a lot of “what if” uncertainties. So, while Mom was out of town, I served as the respite care provider by staying with Dad. This experience informed my suggestions. 

If you are going to provide respite care for a friend, neighbor or loved one with Parkinson’s, here are some tips to keep in mind: 

• Focus on what you can do together: Parkinson’s affects everyone differently, but regardless of how an individual may be impacted by the disease there are still many things you can do. Crank up the person’s favorite music and dance, find out what meal is their favorite and prepare it together, play a game, go for a drive and visit points of interest…the possibilities are endless!
• They lead, you follow: When it comes to conversation, follow the lead of your loved one. Allow them to vent if they want. Some may want to discuss life with Parkinson’s, and for others it’s the last thing they want to talk about. Also remember that if the conversation is slow, or the speech is soft, those are both symptoms of the disease so just roll with it.
• Know the routine: Modifications are common in activities of everyday living for an individual with Parkinson’s. Before you move any furniture, ask if it’s in a seemingly odd place for a reason. Dad keeps a chair in the middle of the kitchen, so he can safely sit and reach everything he needs from one spot. He favors a particular cup that is easier to grip. Knowing the routine helps the respite care provider be able to better anticipate needs.
• Meds can make or break the momentum: It’s important to remember that an individual with Parkinson’s has “on” times when his/ her medications are in high gear and symptoms are minimal, and “off” times when the symptoms are more present. If you are planning an activity, just ask your loved one what time of day is preferred. He or she will be able to tell you the time range in which they feel their best.
• Just in case, keep the medication list handy: Be sure that prior to your respite care service your loved one has prepared a list of the medications, dosage, and times when they should be taken. Know where this list is kept in the home, or better yet, ask for a copy to keep with you. Should any health issues arise during your respite care, this list will be crucial in providing the medical team with important information.

If there is one thing my Dad says often it is that he couldn’t keep up the fight against Parkinson’s without the love and support of his family and friends. If you provide respite care for a friend, neighbor or loved one with Parkinson’s, please know that your service is valued by both the individual and the caregiver alike.

American writer Jonathan Safran Foer wrote, “…everyone is always in need of something that another person can give, be it undivided attention, a kind word or deep empathy. There is no better use of a life than to be attentive to such needs.”

Posted: 7/28/2014 5:26:51 AM by Cathy Whitlock