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

Burnt Spaghetti Sauce

“Some foods are so comforting, so nourishing of body and soul, that to eat them is to be home again after a long journey. To eat such a meal is to remember that, though the world is full of knives and storms, the body is built for kindness” -Eli Brown

There is nothing better than homemade spaghetti sauce with bread and butter. Luckily for me, one of my mom’s legacies is the making of spaghetti sauce. Kate, Emily, and I all view the process as both cathartic and also one of the connections we carry of our Mom. Shortly after Mom’s diagnosis, looking for comfort through familiar and loving food, Kate and I decided to meet at Mom’s and with her guidance make her sauce her way. As fairly budget-conscious people we decided that the best course of action was to make A LOT of sauce, divide it into thirds, then Kate, Mom, and Dad, and I would all have Spaghetti Sauce for the freezer.

Several pounds of hamburger and an ungodly amount of tomato products later the sauce filled an entire stock pot. By the time I got to Mom’s, Kate had begun the process and together we added spices, more tomato product, a little sugar. But, given that this was a significant amount of sauce it was decided (I am not naming names here, but this post’s author did not make this decision) to up the heat some as a mean to speed the process. Not even fifteen minutes later the smell hit us, the sauce was burning. For any person reading this who has ever made spaghetti sauce, you like us know that once you burn the bottom, the entire batch takes on a unique and decidedly burnt sauce taste. But, (again) being the fairly cheap people we are we added more spices, stirred more vigorously, divided and froze the sauce.

The entire winter, Kate, Dad and Mom, and I ate burnt spaghetti sauce. Text exchanges in those months took on a fun theme- “I just had some sauce, if you reheat it with more spices and a little sugar you can barely taste that it’s burnt” and “the sauce isn’t so bad, I made a lasagna and could barely tell.”

Lessons from Sauceageddon 2015

1. Food will in Fact Help

Food and grief are complicated. Some people who are grieving find that food is just not appealing to them while others find themselves managing complicated food cravings. But, food can also promote healing. The article, “Can Food Help Us Cope With Grief?” points out that for many food is tied to feeling of love and comfort. These feelings of love return when we try to perfect or recreate a family recipe. As the article says, “After the death of someone close food can seem unimportant. Grieving can make us lose our appetite and the motivation to cook, but food can also play an important healing role in remembering those who have gone.” For Kate and I, making Mom’s spaghetti sauce with her before she dies helped us in our anticipatory grief. Through cooking and remembering the times we had mom’s spaghetti sauce, we became more connected to mom and each other.

2. It is All About Perspective

We didn’t have to keep the sauce, and we certainly did not have to eat it all winter. But, instead of focusing on the burnt part of the sauce we focused on how to improve it, enjoy it, and use it. Life is going to hand us all more than burnt spaghetti sauce, and we will all have to decide if we are going to eat it or just give up and throw it away. It is not the event that truly matters. Instead, it is how you think about and cope with the event. Today, two years later Kate and I sometimes joke about getting together to “burn some spaghetti sauce.” For us, this has become a code for “hey life is pretty rough right now, let’s do something fun and not focused on caregiving, paperwork, and stress.”

3. Sometimes All you Can do is Laugh

Burning that spaghetti sauce gave Kate and me a chance to either focus on negative feelings such as anger that we burnt the sauce, or sadness that we would not have the same delicious taste we usually did when mom made it, or to laugh at our mistake and take meaning from it. Kate and I chose to laugh. I remember the day of the burnt spaghetti sauce fondly. Not because we made burnt spaghetti sauce, rather, I laughed so hard I cried, Mom laughed at both Kate and me, and we had a genuinely good day. In our lives there will be many moments where we can either laugh or cry, for me, laughing will always be the preferable solution.

How do you handle life’s burnt spaghetti sauces? I would love to hear from you in the comments.

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

 

And They Lived Happily Ever After

“’So what’s the point, then, if we can’t be happy? Why are we doing any of this?’ ‘Oh, there’s definitely happiness,’ Jack said, turning his back on the ocean and looking at her. ‘But it’s just about moments, not ever-afters.” He grinned. “Like when you’re right in the middle of the ocean with your friends, with no one trying to kill you in any kind of horrifying way. You have to appreciate these moments when they happen, ’cause obviously we don’t get many of them.’” -James Riley

I recently had the opportunity to reflect on the idea of “happy ever after” as it applies to my families’ future. At times during this experience, it has been easy to get lost in the hopeless, living one crisis to another. In my reflection on this I wrote, “For months, I had been in a state of survival. Living one crisis to the next and waiting for the damn phone to ring for the next one. From medication reactions to aides getting lost and Mom having to be trapped for hours without any assistance to falls that brought Kate and I to the ER…from suctioning food out of mom’s throat after a really bad choking incident to learning how to humbly with grace help my mom to use the toilet…watching someone die of this horrendously cruel illness has been the single most hardest thing that we have ever done.” In all of this suffering, it can be hard to find time to breath let alone hope or optimism for the future.

Crisis

As I reflected further on the past several years of crisis, I found myself writing, “Every step of this journey, has been one thing after another and those things have been huge, time-consuming, painful, and have resulted in all of us having memories which we would prefer not to. But, in all of this suffering, there is joy. After almost losing Mom last weekend, I saw her on Wednesday and she spoke seven words in a row to me- something I did not think that I would ever hear from her again. That was a good day. This entire process has taught me valuable life lessons- for example, to be there for Mom I have given up a significant portion of my income. I would rather be living paycheck to paycheck and be there for Mom than have all the wealth in the world. But, anyway when that notice came as a family we were trying to figure out how to continue providing care for Mom with my illness getting worse, Dad’s financial situation which we all knew was not good, my brother’s grief related poor choices which were leading him down the wrong life path, plus our usual life stuff- Kate being the mom of a toddler, Emily living in NYC and dealing with guilt of not being closer, etc. That notice changed everything for me- I stopped surviving and starting focusing on other things.” From this low point in the journey, I made a conscious choice to prioritize. I found myself with two mantras which have served me well: 1. Not my monkey and 2. This is a marathon, not a sprint.

Not my Monkey

Managing mom dying has taken considerable resources. We are lucky. There are five of us. For the first year, I wanted to be an active participant with all of it. From applying for benefits to funeral planning every part of it, I wanted to be involved in and helping with. But, we didn’t need five people on all of the tasks. Since my existential crisis and loss of faith, I have separate my monkeys from everyone else’s monkeys. For example, we recently had a situation that needed copious amounts of emails and phone calls. In this situation, there was not much I could offer to it. Rather than calling into conference calls and being an active part, I allowed my sisters to take the lead and had them merely CC me on the emails. In this way, I knew what was going on, but I freed up the time that I would otherwise have had to spend on the phone or participating actively. While they managed that, I spent time with Mom at the nursing home and helped with developing a new plan for eating. In another example, I am the weekday nursing home person. I am available during the week, so I visit on weekdays. On the weekend, I stay home and manage my own life. Sometimes I miss out on seeing extended family or visiting with my brother, but, I am able to have time at home to rest, work, grocery shop, etc. when I otherwise would not.

This is a Marathon Not a Sprint

We have limited time with Mom. In knowing that she is dying, it is tempting to spend every resource and every ounce of energy being with her. But, if I give ALL of my resources right now, I won’t have any for next month or next week. So, I have to prioritize and allow myself the ability to say “no.” Back when Mom was at home, I didn’t have many choices. The times and days I said I would be there she and Dad were counting on me. If I didn’t go then, Dad had to call out of work, or we would have had to deal with the agency and beg them to find someone to step in. Mom’s days were always harder with the agency, and there was enormous pressure to make sure that no matter what I was there. Now, even though Mom has skilled nursing care at the nursing home, I still feel these pressures. When I tell Mom I am going to be there; I show up. No matter what. But, it is on me to manage when I am going to show up and what I tell her. It is also on me to recognize and forgive myself when I can’t. It is a constant readjustment of boundaries, schedules, and knowing that if I have nothing left over, then I am no good to anyone.

Finding Myself

I can’t describe it accurately, but after losing my faith over the summer, I regained it. From that low point, I found a calm core inside of myself which I had thought I had lost- the “everything happens for a reason, and it will all work out” core. I like you try my best to find optimism in these dark places, and I must believe that 1.) everything happens for a reason, and 2.) suffering has meaning (a great life lesson from Viktor Frankl and “Man’s Search for Meaning

I do believe we get a happy ever after- we just have to redefine it. Happy every after in a new chapter without this most recent crisis lingering over our heads. Happy every after to enjoy those seven words in a row. Happy every after to make meaning from all of this. I don’t know yet- my higher power did not consult me and ask me for my permission for any of this, and the universe often provides these lessons in retrospect, so the jury is still out on the exact ending. But, I do think we get a happy ever after just not the one we would choose if we were asked.

For today, Dad can spend time with Mom after work, and they can enjoy each other’s company. For today, I can sit on mom’s bed with her, Red Sox playing in the background, and help her to remove her toenail polish and trim her toenails- lost in the comfort of being with my Mom. Ultimately, all we have is today.

In the words of the Beatles, “and in the end, the love you take is equal to the love you make.” We are blessed, as, despite everything, the one thing I know without a doubt is that love remains.