Simple Steps to Create a Respite Plan

I tend to over complicate and over think the simple. For me, keeping it simple is an important way I preserve my energy and prevent burnout and fatigue. When we care for a disabled or aging loved one it can be challenging to take a break. I quickly become overwhelmed thinking of all the details involved in my mom’s routines, preference, medications, and daily living. Thus, when I think about writing it down into one document to share with her care team, I get overwhelmed. For me, keeping it simple involves a simple acronym: NICE. Breaking down respite planning into Needs, Information, Care Planning, and Enjoy helps me to remember the essential parts of planning for a break while at the same time keeping it simple.

Respite Plan with NICE by Jenny

Taking a Break from Caring

“People tell you to keep your ‘courage’ up. But the time for courage is when she was sick, when I took care of her and saw her suffering, her sadness, and when I had to conceal my tears. Constantly one had to make a decision, put on a mask and that was courage.” -Roland Barthes 

It can be overwhelming and even a little scary to leave your loved ones in the hands of complete strangers. Even leaving a person with PSP (or any debilitating illness), in the hands of family or loved ones who do not provide daily care can be somewhat nerve-wracking. But, without breaks caregivers are at risk for burnout, increased stress, and fatigue.  In fact, when caregivers were studied it was  determined that they experience a 23% higher level of stress hormones than non caregivers.

Negative Impact of Stress on the Caregiver

Stress negatively impacts our thoughts, feelings, and behaviors. For example, WebMD notes that increased stress is linked to higher incidents of alcohol use and abuse, sleep disturbances, obesity, high blood pressure, heart disease, and diabetes. Even though we can feel guilty leaving our loved one in someone else’s care, it is critical to take breaks when we are able to.  Without these breaks not only are we at risk for the above-mentioned health impacts but also, caregiver burnout can lead to increased impatience with our loved one.

Taking a Break from Caregiving

Respite care is an invaluable resource which caregivers can utilize for a break. While some people find that twenty-four hour or week-long respite care in a facility is the best choice for a loved one- even finding one afternoon a week can be enough to reduce some of the fatigue and stress associated with being a caregiver. There are several options for respite care. First, family and friends are often willing to provide a few hours of care. Second, Medicaid, Medicare, and other insurances will usually cover a few hours of in-home care time.  The ARCH National Respite Network offers a comprehensive list of resources for finding for, paying for, and utilizing respite.

Walking Away

Once an alternative care provider is in place, the challenge becomes walking away. When you are the primary or even secondary caregiver, it can be very challenging to let go and give yourself the time away. I still remember the feelings of powerlessness I felt whenever I had to arrange for someone else to provide care for Mom. I constantly wondered how it was going?  Was Mom happy? Was she getting her needs met? After Mom asked for and went to the nursing home, my sister and I called the facility way more often than we needed to.

The first morning Mom was in the nursing home I had extreme difficulty letting go, I didn’t know if they were helping her in the way she preferred, I was anxious about her inability to communicate her preferences, I was scared that the staff wouldn’t be patient or nice to her. Eventually, I made a binder of Mom’s preferences and needs that she can use to communicate with people on the days where she is not able to clearly talk. The binder combined with other assisted communication devices and the fact that they now know her has helped me to let go. When Mom was home, talking with and explaining her care to new caregivers allowed me to feel more confident in their ability to assist her.

Resource

One of the things that helped me to let go and take breaks was the knowledge that the person taking care of mom knew her routines and preferences. During the years of in-home care, my Dad would leave notes for the aides, and we would call at times. I talked about creating a worksheet and document about Mom’s needs, but, time was never on my side. The following is a worksheet that I wish I had developed for us to use when we left Mom in someone’s care: Caregiving Break- Worksheet  (PDF Printable Version). 

Caregiving Break- Worksheet