Sustainable Caregiving: Boundaries

Changing roles and responsibilities

Caregiving changes our relationships. If our care recipient is our parent, our relationship shifts from parent / adult child to caree / caregiver. It may be a gradual shift over several years or a sudden shift in the case of a hospitalization or a disease diagnosis. Regardless of the pace of progression, responsibilities change over time and these changing responsibilities require that we reassess our boundaries. If you haven’t given much thought to boundaries prior to now, this is the time to reevaluate roles, relationships and limits so that you and those traveling with you on your caregiving journey, feel respected and supported.

Boundaries will protect you from burnout. In addition to relationships changing with your caree, relationships change with siblings and friends. Boundaries will help you determine who is on your care team and who is only adding drama to the experience. You will find yourself in the new role of communicating and coordinating care for your family member and it can feel awkward and intimidating. Boundaries will help you balance managing professional interactions with people who are helping with an intimate situation.

What are boundaries

Boundaries may be set to protect our time, our emotions, our energy, our compassion reserves and our values. When we set and communicate boundaries, we are respecting ourselves and others. Boundaries are:

• limits that we set to protect our physical and emotional well-being.
• guidelines and rules that are communicated to define what behaviors you will accept from those around you and what your response will be if your boundary is crossed.
• rules that help us define who we are and what we believe to be our responsibilities.
• set around communication, interaction and behavior.

Why setting boundaries is important

We may start by helping our parent a few days a week. Two days a week can unwittingly slip into assisting with daily activities. Bit by bit, we can start to give up our hobbies and interests until we are entrenched without a clear way out from under the tasks. What starts as fulfilling work becomes oppressive and frustrating when we don’t keep our life. Keeping our life means protecting our other relationships and protecting ourselves from burnout. In this way, boundaries are a form of self-care. Boundaries in caregiving are important even with the best relationship history. When our roles shift dramatically, it is important to mindfully redefine responsibilities so that we don’t let our generosity lead to feelings of resentment.

“Compassionate people ask for what they need. They say no when they need to, and when they say yes, they mean it. They’re compassionate because their boundaries keep them out of resentment.” Brené Brown

Boundaries prevent burnout

Healthy boundaries help us maintain healthy relationships. Caregiver burnout occurs when we have given too much of ourselves. Establishing boundaries is a way to communicate our needs. Boundaries offer the opportunity to be more in control of our time and how we spend it. Without boundaries, the overwhelm of caregiving can feel like being in the middle of a storm of emotions. Setting boundaries is a way of respecting ourselves and protecting ourselves from the storm.

When you choose when to give, you save enough of you so that you are able to give when you choose.

Abuse

If an adult child is caring for a parent who was abusive and that dynamic continues to play out during the caregiving experience, I recommend reading: Detaching With Love: Setting Boundaries With Difficult Elderly Parents, by Carol Bradley Bursack. It is an article that addresses the challenges and strategies to cope with a dynamic shaped by abuse.

Why setting boundaries is hard

There are several barriers to setting boundaries. A common barrier is that we have not been taught how to set boundaries and therefore don’t recognize the need. Another barrier occurs when we realize a boundary is necessary, but feel guilty about setting the boundary. Similarly, we set a boundary and it is rejected or resisted. We may be told that we are selfish for setting the boundary, leading to guilt and confusion about the validity of the boundary. It is possible that we are interacting with someone who does not set their own boundaries or respect those set by others. In this case, consistent reinforcement may be challenging due to uncomfortable confrontations. These uncomfortable confrontations may cause us to ignore a crossed boundary.

Daring to set boundaries is about having the courage to love ourselves even when we risk disappointing others. – Brené Brown

While setting boundaries can feel selfish, the opposite is true. Well maintained boundaries are a gift to yourself and those in your caregiving circle. The confidence to stand firm will come from being clear in your intention and in your communication. Practice will make the process easier.

Communicating boundaries

When you start to feel guilty about setting the boundary, remind yourself that setting boundaries is not selfish, but an important part of your self-care as a caregiver. These boundaries will allow you to sustain yourself as you provide care. They will protect your compassion reserves, so that you are able to provide the care that is in line with your values.

Tips for effective communication

• Be clear on your intention so that you can be clear in your communication.
• Respectfully and with as few words as possible, communicate your boundary.
• Word the request in terms of what you need and why you need it rather than using the word “you”. For example, “I need some space…” rather than, “You need to stop…”.
• Share the consequences if the boundary is crossed.
• Be firm and unapologetic.

Too rigid, too flexible, just right

If we are comfortable saying “no” and accepting a “no” from others, then we understand and respect healthy boundaries. It may be that you are skilled at setting healthy boundaries at work, but are less confident setting boundaries with family and friends. Learning to set and maintain boundaries in a new setting takes awareness and practice. With practice, we can determine when boundaries are too rigid, too flexible, or just right.

For example, there are varying degrees to which we can “open up” to people and share personal information. The extreme ends of sharing are “rarely opening up” vs “oversharing”. Somewhere in the middle is where healthy boundaries are formed. Another example of too rigid vs too flexible is never asking for help vs never saying no to a request for help. A boundary that is just right helps us not become overly independent and too detached.

What caregiving boundaries look like

Boundaries may be set with our caree, those who are helping us care for our caree or anyone who impacts the care that you provide for your caree. Personal boundaries are complicated because you can’t see them and they may need to change with circumstances. Healthy boundaries will help relationships feel supportive rather than strained under the stress of caregiving. Boundaries will help prevent resentment that can result when we give up too much of our life to caregiving or a well-meaning person offers unwelcome advice or attempts to help in a way that is not helpful.

Boundaries with our caree

Defining a limit around care responsibilities is one of the most important boundaries we can set to minimize resentment which can lead to burnout. Caregiving tasks can quickly shift from manageable to overwhelming. Determine how much time and effort you can spend on helping your family member and have a plan ready to get help when the limit has been reached. Another limit may be necessary when care responsibilities involve physical risk or become too intimate for your comfort. For example, you may decide that you will not be able to help your caree with showering or toileting.

Living in the same space can expose relationship dynamics that would otherwise be kept private. For example, your caree may be privy to conversations between you and your young children or between spouses who are caring for a parent. Boundaries can help us share appropriate personal information without oversharing relationship details or receiving unwarranted opinions. Shared space also keeps us in a heightened state of awareness regarding our caree’s mood. We can’t be responsible for someone else’s happiness or contentment. If we find that our caree’s mood dictates our own mood, it is a signal to revisit boundaries.

Boundaries and dementia

Consequences are crucial to proper boundary settings and this can be complicated when dealing with an aging adult with cognitive decline or a dementia diagnosis. Teepa Snow offers an approach to caring for a family member with dementia and explains brain changes that occur with the disease. It can help us to better understand behaviors that may cross our boundaries. If your caree is not able to remember that a boundary was set, then the rules must be self-enforced. For example, if you have requested that a parent not enter your room without knocking, but this continues to occur, you will need to lock the door.

Boundaries with paid caregivers and aides

Limits may be set around sharing personal information. The folks who help you care for your family member often become like a part of the family. If this relationship becomes too familiar, it can be uncomfortable communicating when there is a concern with how tasks are accomplished or if personal conversation interferes with responsibilities.

Another example, limits may be set around light housekeeping. If you share space with your caree, you may appreciate that the aide helps maintain the cleanliness of your caree’s living space and prefer to manage your own areas. Clear communication can avoid hurt feelings when a kind gesture on the part of your aide feels like an unwelcome invasion. In general, when more rigid boundaries are established early it is easier to move to more flexible boundaries. It is not easy to start with flexible boundaries and shift to more rigid boundaries.

Boundaries with family members

Limits may be set around when to have conversations regarding your caree’s care. If a family member frequently drops by and offers suggestions and advice, it may feel like criticism when you are exhausted and overwhelmed from the responsibilities of day to day care. It may help to establish guidelines around communication concerning care. With mindfulness and compassion, you can let them know that they are important to you and that the topic is important, but that, right now, you are not able to give it the attention that is deserved. An informal meeting once a week may be more productive and less inciting.

Another time when setting boundaries is important, but can feel uncomfortable, is when your caree is transitioning. Well meaning family members may insist that you take a break and you may not want to, or want to take a short break. This is for you to decide.

Boundaries with friends

Friends of your caree may drop in unannounced and it might cause a disruption to the schedule. The disruption might start a stress snowball. Social interaction is important. Communication and coordination with folks will show respect for the relationship and demonstrate that you value the friendship. Setting boundaries around visits will ensure that quality time is spent between your caree and visitor and that things don’t go off the rails as soon as they leave.

Boundaries with neighbors

Boundaries with neighbors may be needed due to circumstances similar to friends and family. As care needs intensify, the previous welcomed drop-in visit may start to feel like an imposition. It may be that a neighbor is offering interfering advice that is causing friction between you and your caree. Establishing boundaries around visits and communication can help preserve the relationship and allow mutually beneficial interactions.

The mindfulness – compassion – boundaries connection

The mindfulness, compassion and boundary connection enables us to use mindfulness to act in accordance with our heart and use compassion to set boundaries in accordance with our values.

Rewrite the story

As caregivers we face many common barriers that impede us from acting with compassion, including exhaustion, anger, resentment and fear. When our boundaries are consistently crossed, these barriers increase in size and intensity. As kids, we ooze compassion. As caregivers, it can feel like our compassion has all oozed out. This leaves us feeling empty and angry and wondering who we have become. Mindfulness helps us maintain and protect our boundaries. It is these boundaries that help protect our compassion reserves. Without boundaries, the swirl of emotions can create turmoil. We can use mindfulness to be aware of what is going on inside.

Anger is a sentry, stalking the edges of our boundaries and standing ready to defend them. – Jessica Moore

Mindfulness can help us identify when the anger that we feel is due to a crossed boundary. This awareness gives us several opportunities to pause the story and rewrite it. For example, we can act rather than react which will minimize regret. We can respond in a way that reflects our values which may mean that we set or modify a boundary. When we reinforce the boundary with compassion we maintain the relationship. Mindfulness helps us determine when a boundary is not working, it may be too rigid or too flexible. Mindfulness helps us consistently reinforce boundaries which makes them more effective.

Get off of my cloud

Healthy boundaries help prevent compassion fatigue which can lead to caregiver burnout. Compassion fatigue can occur when caregiver stress has gone so far that it affects our overall ability to feel compassion, not just for our caree, but for anyone, including ourselves. We could say that healthy boundaries are inspired by compassion; compassion for ourselves, compassion for our caree and compassion for those who help us care for our caree. Compassion helps us reinforce our boundaries in a way that maintains relationships and maintain an overall sense of well-being. Boundaries help us protect our compassion reserves by establishing limits that prevent a build up of resentment and anger.

“Never give from the depths of your well, but from your overflow.” – Rumi

Imagine your compassion reserves are in a blue heart shaped pillow and you are hugging this pillow. It gives you comfort and you are protecting it. You are holding your compassion and sitting in a fluffy cloud, a cloud of calm and clarity. The cloud boundaries shift. You can’t see or touch them, but they are there, protecting you and your compassion reserves. Outside the cloud is the chaos of life, but the area within the circle, around you remains calm because the boundaries work to protect your compassion reserves. When someone starts to cross your boundary, channel the Rolling Stones and say “Hey, You, Get off of my cloud”, but say it with compassion.

What do I need in this moment?

As we reconnect with the source of love and compassion within ourselves, we can use this compassion and set boundaries to protect our well-being and our compassion reserves. In that moment, when the emotions are swirling imagine giving yourself a big hug. You deserve it. This is hard. Ask yourself the question, “What do I need in this moment?” Take a few deep breaths and sit with that question. You might then ask, “What do we need in this moment?” These questions will lead us to compassion. If we can be compassionate with ourselves while feeling these powerful emotions, the barriers, mentioned earlier, dissipate. We can then accept our situation, our challenges and our shortcomings. We can more clearly see if we need to reinforce, set or modify a boundary.

A force of sustainability

Cultivating mindfulness and compassion, and setting boundaries are each powerful on their own. When combined, they are a force of sustainability. If prior to starting out on my caregiving journey, I had developed a foundation of mindfulness, cultivated self-compassion and learned to be honest and direct in communicating boundaries, I would have more quickly come to realize the value of the experience, the gifts and the meaning. I would have avoided much of the stress that built up over months and years and caused me to feel hopeless and to lose my sense of self. You are on a journey. Make sure mindfulness, compassion and boundaries are in your carry-on baggage because they will help you stay found. What boundary will you set today?

Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.

Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.

Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.