Setting Boundaries

Boundary work is just as much about negotiating and asking for what we want and need as what we don’t want and don’t need. To this end, if we are working towards not just our own individual safety but towards changing the conditions in which people are not safe or are harmed, boundaries are about imagining radical possibilities as much as responding to events in the present.” -Cristien Storm

Every caregiver has their limits. My limit was toes. I had no problem helping Mom in the bathroom, hand feeding her, or helping her get dressed. But, trimming her toenails was my line, and I was not going to cross it. Until I did. Mom had her toenails painted through a loving act of kindness from an LNA, and a month later the polish was chipping and bothering her. So, she asked me to get nail polish remover and get rid of it. So, one sunny afternoon I sat on my Mom’s hospital bed, her foot in my hand and removed her nail polish. Once I got that all done, I figured why not, I’ll trim her toenails. With the Red Sox spring training game playing in the background, the spring sun shining through the window, I crossed my caregiving line.

I don’t know why trimming mom’s toenails was my line. For whatever reason, it was just the thing I decided I was not going to do. Kate, or an LNA, or anyone else could do it. It was not for me. But, in crossing my line, I connected with Mom in a powerful way. Somehow, sitting in her bed with her, listening to the game, and doing her toenails was comforting.

Boundaries

When we set a boundary, it is our way of telling others (and ourselves) what is and what is not acceptable to us. These boundaries can be physical, emotional, mental, spiritual, and sexual. The PsychCentral article, “What Are Personal Boundaries? How Do I Get Some?  highlights the fact that “love can’t exist without boundaries.” In caregiving, knowing my limits and boundaries has helped me to avoid burnout and fatigue. But, these boundaries also have been harmful when they have been so rigid as to block me from being open to new possibilities.

Examining Boundaries

Some of my boundaries are critical and help me to not only stay safe but also maintain my emotional health. But others come from misconceptions or lines I draw for arbitrary reasons. I don’t know why my limit was toes. But, by having this arbitrary boundary I was limiting the acts of love I did for mom, and in setting this arbitrary limit, I was avoiding an experience which ultimately connected me with my mom in a way that we both needed.


Who?

Just like we have varying levels of intimacy with different people, we have different boundaries for different people. For example, my physical boundaries allow for hugging close friends and family but not acquaintances. Asking ourselves what our comfort level and needs from the various people in our lives can help us to determine the “who” of boundary setting.

What?

When we clearly define what the limit or boundary is for ourselves, we can then communicate this more clearly to others. Asking ourselves what we need is a good first step in determining the “what” of boundaries. In addition to understanding what we need we can also ask ourselves “what else?” For example, if we are uncomfortable with hugging, we could ask for a handshake instead. As a caregiver, I at times have had to set boundaries with people in my life so that I can have the needed time to take care of me.

Where?

Just like we have different boundaries for different people, different places will require difference boundaries. Our boundaries are work look different then those boundaries we employ at home. Determine where difference boundaries are needed allows us to determine the location for each of the boundaries we set.

When?

Asking ourselves, “when do I need to set this boundary” is helpful for us to determine the timing of the boundary. For example, when my mom was at home, I had to set boundaries with work about contacting me when I was with her. While I was available to respond to texts, and emails on most days the days I was with her I found the influx of email notifications to be undue stress and pressure. I found that sending an email to my clients explaining that I not available on certain days helped to keep the extraneous emails at bay.

Why?

Understanding why we need certain boundaries can help us to determine what purpose the boundary poses. In my life, the boundary of “no toes” served to protect me from something which I had no need to be protected from. I was intimidated by mom’s feet for no other reason than my own misconceptions and personal feelings about feet which had no basis for my reality. When I stepped back and asked myself “why” this boundary was in place I was able to see that instead of protecting me from a true threat this boundary was keeping me from experiencing closeness.

 How?

In some cases, a boundary needs to be communicated verbally whereas in other instances actions can set a boundary. When we ask ourselves how we plan to set the boundary, we can choose the communication method that is most appropriate.

In setting boundaries, assertive communication is the most effective. Rather than telling someone what they should do, it is essential to focus on “I” statements and one’s own feelings. When setting a boundary with someone else, there is no need to apologize or over-explain our positions. Instead, we can keep it simple with an “I” statement such as: “I am not comfortable with hugging, can I shake your hand instead?” In other cases, we don’t have to communicate verbally. For example, if someone seeks to hug when we are not comfortable, we could use an assertive statement, or we could simply take action such as putting out hand out to intercept the hug and turn it into a handshake.

Putting it all together: Boundaries in Action

Once we understand the Who, What, Where, When, Why, How of our personal boundaries we can work to communicate these boundaries with others in our lives. Setting these boundaries with others allows us to work towards preserving our emotional and physical well-being.

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