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Coming Out of the Caregiving Closet

Thursday March 06, 2014

"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." - Rosalynn Carter

Today, the Washington Post came out with a special report on family caregiving in the United States. While reading the article, I couldn’t help but think about the Caregiving in America Conference I attended on February 19th in Seattle. Hosted by AARP and Washington Post Live, the conference featured an illustrious set of presenters, from TV personality Rick Steves of PBS, to the state of Washington’s First Lady Trudi Inslee, to aging expert Nancy Hooyman. More than my admiration of the speakers, I was struck by one fact in particular: 1 in 5 people in the United States is caregiving for family members[i], and 1 in 4 of these haven't told anyone.

What does this mean to me, as a staff member of an organization whose mission is to optimize quality of life for the Northwest Parkinson’s community? I am well aware that many of the people who reach out to us are caregivers of folks with PD. Often the person calling us is a spouse or adult child. Usually, after trying to answer the questions a family member has concerning their loved one with PD, I then ask the person how he/she is doing. Usually the answer is a very rapid response of “fine.” However, when I ask again, the caregiver will admit to many issues and fatigue. It is often hard to get a caregiver to look to his/her own health. I usually try to stress that if you put yourself at risk of poor health, you then put both of you at risk.

But how can NWPF better reach out to that 1 person in 4 who hasn’t told anyone about caring for a loved one? Many family members don’t even identify as caregivers, even though there are services available to them. As Trudi Inslee said during the conference, “It’s time to come out of the caregiving closet.” In Washington State alone, there are an estimated 850,000 family caregivers, and only 1% receive services[ii].

First, if you are taking care of a family member with PD, know that you are not alone. NWPF staff are here to talk to you and help you find resources and services. There are a lot of emotions that can come up around caregiving, such as guilt that you can’t do it all, isolation from people who don’t know what it’s like and feeling burdened by a situation that you didn’t choose. It is important to reach out, even though it can be hard to ask for help. We are here to lend a listening ear and support your goals and choices around caring for your loved one.

Second, sign up for our PD Link Northwest program. It often helps to talk to another person who understands the reality of living with a person who has Parkinson’s. PD Link was designed to specifically address your needs as a family member or caregiver. The program is a peer-to-peer support network that will connect you with another caregiver over the phone or email. The program is free, and you can find more information and sign up here.

Third, participate in one of our many other programs. In fact, many of our programs are designed to help caregivers as much as people with Parkinson’s themselves. Our Dance for PD and Parkinson’s Cafe programs, for example, encourage people with Parkinson’s to attend with their family members and caregivers. Additionally, our educational and support forums and conferences target both people with Parkinson’s and caregivers.

Please let us know if we can help. You can call 206.748.9481 or 877.980.7500 or email info@nwpf.org. Caregivers are the life blood of the work we do. It’s never too late to open the caregiving closet door and walk on through.

 


[i] (2014). Centers for Disease Control and Prevention

[ii] (2014). WA State Department of Health and Social Services

Melissa Tribelhorn, MPA
NWPF Program Director

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