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.

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

Mom is Stuck, the Phone, and Friendly’s

“There is no such thing as a good call at 7 AM. It’s been my experience that all calls between the hours of 11 PM and 9 AM are disaster calls” -Janet Evanovich

I was standing outside of Friendly’s restaurant in Greenfield MA when I got the Facebook message: “Mom is stuck.” I had no idea what “mom is stuck” meant…is mom stuck in her wheelchair, stuck on an idea, stuck in a rut? So, even though I was supposed to be on a date with my partner who admittedly I had been neglecting recently- a dying mom will do that, I called my sister. Standing outside of Friendly’s, the car full of Christmas decorations, in the cold December evening I learned what “stuck” meant.

Apparently, since Dad had been home mom had been unable to move, talk, or do anything. Kate and I both hoped that the stuck would be temporary, but we prepared ourselves for not just in case. Dad had called Hospice and apparently this was okay as long as she was breathing normally which she was. So, with nothing else to be done, I went and had Friendly’s. I ordered a turkey Supermelt with French fries, and we split a Reese’s Peanut Butter Cup sundae for dessert. It was absolutely delicious, and I didn’t cry inside the restaurant once. But, the focus of the conservation was on Mom and stuck. I wondered out loud if this was it, was this her new norm? Would she come back? If not what would we do? I remained focused on Mom being stuck for the remainder of the evening and while I did not cry inside of Friendly’s once I did cry before I went into Friendly’s, driving home on 91, and once when we got home. PSP sucks like that- I don’t want my entire life to be wrapped up in PSP, and I know it takes a toll on every single relationship I have. I know my partner wanted us to be ordinary 30-somethings getting ready for Christmas, going out for dinner, talking about work, school, and our holiday plans, but again I drove and cried, and I was so focused on what “stuck” might look like.

As was our new normal, I messaged Kate a lot that night as we sat by and waited on standby and when the next morning Mom woke up “unstuck” we celebrated this small victory over PSP. As the months wore on, the “mom is stuck” message would be repeated. In fact, “Mom is stuck” just became a normal part of the interactions between Kate, Dad, Luke, and I. We all learned that stuck would happen and that she would unstick, and maybe someday she would not unstick. But, all that we could and can do is what we had done since she started falling- wait and see and take it one day at a time, that powerless feeling that is just a part of PSP.

Everything in my life over the past two years has been impacted and shaped by the backdrop of “Mom is dying.” This dinner at Friendly’s and “Mom is stuck” was not unlike any other outing I have taken since her diagnosis. My phone remains on all the time, and I wait.

I wait for the message from Kate, the call from Dad, when she was home it was the calls from RAVNAH and now the occasional call from the nursing home. The phone and I have a complicated relationship. For example, when I am relaxing at home or even in bed with my phone in another room when the phone rings or pings both my partner and I go running. I want the phone to be somewhere else, and I want not to have to jump whenever I hear it, yet, I can’t not. Especially when Mom was home, we were on constant alert, with constant anxiety, and I was tethered to my phone. The phone is often the bearer of some new horror of life-changing/interrupting thing that just can’t wait. So, I manage the phone in between normal everyday life- just because my mom is dying does not mean the world stops (even on those days I wish it did).