Advanced parenting, p.18
Advanced Parenting, page 18
Your options are to “give up” on finding a way to integrate them into your family life or to try and find a way to help them get to where they need to be to support your journey. You can provide context and education, set expectations, and follow through with boundaries to make their engagement in your child’s life safer and more pleasant for all. This work will take energy, but expecting them to learn and change without your guidance and involvement may be unrealistic. To that end, in this chapter we’ll discuss some strategies for getting family members on board when one or more of your children is facing challenges.
Families come in all shapes and sizes. Many parents are single parents. While some of the language of this section may invoke the idea of a traditional nuclear family, including a spouse, with many of the families I work with, the co-parent is effectively an aunt, grandmother, or babysitter. Whatever type of parenting partner(s) you have, you need a plan for how you share the efforts of meeting your challenge.
As a parent, you have a lifelong commitment to your child and love them unconditionally, but you do not have to be a parent to partner in parenting or caregiving. So many families have grandparents, aunts and uncles, cousins, or close friends who are part of their day in and day out life. Anyone who is truly invested in your child, who loves them and who you can count on to consistently help, can for the purposes of this discussion be considered a co-parent.
In many situations, hired help, including babysitters, teachers, or nurses, fall into a different category. I have seen magic happen when these professionals become integrated and develop a relationship based on something deeper than a contract or a salary. If you are lucky enough to have a helper who becomes someone you can really depend on, protect and support that relationship.
Why You Need a Co-caregiver
Arturo was a teenager with tuberous sclerosis, a genetic condition that predisposes to developmental delay, intellectual disability, tumor formation, and epilepsy. He was unable to communicate verbally and had behavioral issues that precluded his participation in school. He and his mother were very close, and no one knew how to manage his behavior but her. Her family mostly lived elsewhere, and his father was not involved. She knew the early warning signals that indicated an imminent meltdown, and she knew how to reroute her son to avoid them. She was the one facilitating home school, feeding him every meal, helping with his daily needs, and getting him to sleep each night.
I saw that she was doing all this work on her own, without a break, and I worried for her well-being. Every time I saw her and Arturo, I asked about respite. When does she get a break to see her friends or visit her family? Who helps her and how can we get her more help? Mostly she would push off my concerns, and I would respectfully back off. But one year, she said she was glad I asked. Her mother was ill, and she needed to travel to go and see her. We’d need to find a place for Arturo to stay for two weeks in about three to six months. We rallied the social work team and arranged for Arturo’s mom to visit the options covered by his insurance. Around that time, disaster struck.
Arturo’s mom contracted an infection of her gallbladder and gallstones, and she was hospitalized and required emergency surgery. It was now urgent that we find extra help for Arturo. Luckily, since we had a head start on some of the approvals and paperwork, we were able to get Arturo placed within a few days in a subacute nursing facility where children with special health-care needs sometimes stayed to recover from surgery or to provide their families with respite. Unfortunately, while waiting for the insurance approval and bed allocation process, Arturo had to be held in the pediatric emergency room and hospital unit for two days to facilitate the transition, an uncomfortable and inconvenient situation.
Arturo was worried about his mother, but he managed fairly well in the subacute nursing facility. His mom saw that others were capable of stepping up to care for him—not as well as she did, but well enough to ensure his safety and comfort. He returned to the facility at least annually thereafter, whenever his mom was unable to care for him for an extended period of time—due to health or personal reasons.
Arturo’s mom was devoted to him, but part of being an effective caregiver is recognizing that you can’t always be there. It’s not always best for the child when one caregiver is managing a situation alone. While one person may own a given part of caregiving, such as administering the medications, another caregiver needs to be prepared to step in if needed. When a parent includes others in caregiving, this will also increase the quality of the care. While sometimes we shy away from sharing work because others approach things differently, there is also the opportunity for improvement when we gain a new perspective.
When a parent has a partner in caregiving, another important upside is the possibility of finding more joy and connection with others. In my work, I’ve had jobs where I had a robust team, as well as a solo practice where I was relatively alone in my work. Working alone, I missed having an opportunity to celebrate the wins with others, as well as the chance to vent frustrations. Similarly, when one caregiver is managing a situation alone, it can lead to isolation, frustration, and burnout. When these issues are left unaddressed long-term, this can lead to depression.
If you have been doing all of the caregiving work alone, I urge you to find partners in this work. Sometimes I speak with single parents without local family members, who are in situations with few obvious supports, as with Arturo’s mom. Financial and practical limitations to finding caregiving support are difficult barriers. Sometimes parents can find meaningful connections and support from neighbors, religious institutions, or other parents of children with special health-care needs. I’ve also found that even parents with engaged and loving co-parents still feel alone in the work of caregiving. We have to be realistic and open-minded about who the best candidates are who might be able to help you, and for many families we have to think outside of the traditional box of your co-parent being the only person able to functionally engage in this caregiving work.
What are the root causes that lead us to remain alone in our caregiving responsibilities? As you’ll see in the examples below, often difficult feelings underly our hesitation with practical consequences:
• Guilt: AJ had been born prematurely with developmental impairments and had a long stay in the NICU. AJ’s mom seemed to be furious all the time. It took me a few months to realize that she was mostly angry at herself. She blamed herself for his preterm birth, and she punished herself by pushing away support. His premature birth was not her fault, and even if it were somehow, she still was worthy of support, and her son was still deserving of the best care. AJ’s mom had unresolved feelings of guilt that led her to behave like a martyr.
• Shame: Neveah’s mom was tough. She had overcome a lot of adversity and worked really hard to not need help from others. She did not want pity and she certainly didn’t want any help. Whenever Neveah’s health took a bad turn and Neveah’s mom needed support, we would review the list of people in her life. She didn’t want the neighbors, her boss, or her uncle to know what she was facing. Some of what kept her from opening up to these individuals were her feelings of shame. She was understandably proud of where she was and what her daughter had accomplished, and she worried that others would diminish those feelings and see her family in a more vulnerable and negative light.
• A need for control: Laura’s mother had considered her options and decided none were good enough. Her child’s grandmother made too many snide comments, her husband worked too much, and her sister had questionable judgment. But underlying her struggle was her need for perfection and control. For Laura, the anxiety that she felt coping with her child’s challenge had only been soothed when she was doing everything herself in a way that was up to her standards.
I can’t know you and your family personally, but frequently in addition to the financial and logistic barriers to getting help, emotions stand in the way. I’d encourage you to dig deeper and consider whether your guilt, shame, or anxiety might be keeping you from getting the help you’d like in supporting your child. In the next section, I’ll tackle some strategies for collaborating with a co-caregiver.
Successfully Collaborating with a Co-caregiver
One family I worked with had an organized and successful mother who knew every detail of her daughter’s medical care. Her daughter had been born premature at just twenty-four weeks, and her main medical issue was chronic lung disease due to prematurity. She needed oxygen and had a tracheostomy—a breathing tube—in her neck that we hoped she’d outgrow as she became bigger and stronger. Her mother’s brain held every action item relating to her daughter’s health, the inventory of supplies and medications at home, the name of every nurse they used at night and every doctor they had seen, as well as when a refill or follow-up visit would be necessary. She didn’t just know her daughter’s history; she knew all the past dates of procedures and symptoms, when dosages had been adjusted, and she deeply understood the pathology of her daughter’s underlying condition.
But it was the dad who was with the daughter most during the day. He knew a bit more about the daughter’s personality, her tastes, preferences, and her activities. When he showed up for visits, he was never shy about his limitations. He did not necessarily know the medications or the details, and in most visits would immediately get the “decision-maker” mom on the phone.
But Dad’s perspective was valuable and important. When I would coax his participation, he would chime in with specific observations about what he saw, adding comments like, “Last night was bad, but I don’t think she’s coughed once today.” He had a strong intuition about his daughter’s wellness and when something seemed wrong, he didn’t always know why but he always knew to say something and collaborate to figure it out.
What I loved about their balance was the mutual respect—at times he would say things like, “I am the one who is doing the day-to-day caring and she is the one driving the bus.” Their arrangement was not entirely equitable, as he was devoting more hours to childcare, but they both had a sense of peace about the situation and could talk about it without tension.
Finding balance between two parents can be a challenge—your workload and the complexity of what you manage day-to-day increases substantially when you have children. When you have caregiving responsibilities on top of this, you are navigating not just co-parenting but also co-caregiving. If it’s rare for parenting responsibilities to be equitably and fairly divided, it’s even more unusual to have caregiving responsibilities that are easily divisible. Someone is always at more appointments, doing more research, or present at more therapy sessions. There’s nothing wrong with this—it simply reflects the reality of most households. Depending on work outside the home and childcare responsibilities, every family has to find their unique balance, and things can shift as needs change over time.
What’s nonnegotiable is that all members of the caregiving team need to feel their contributions are valued and that all are in the loop enough to be part of important conversations. As you think about where you are and where you are going, it’s helpful to have goals. When I imagine the ideal co-caregiving dynamic, I look for the following:
• Appreciation, shared understanding, and mutual respect
• Fairness and equity
• Clear boundaries, with flexibility
One of the most common problems is having work go unseen. Often primary caregivers do dozens or even hundreds of tasks that their partner or family do not know about. Only when your work is known can it feel appreciated. You can’t have flexibility when one caregiver doesn’t know what the other is doing. To stay connected, especially if you are starting out on the caregiving journey or a new facet of it, caregiving partners should share both the roses and the thorns. Partners should regularly discuss the best and worst parts of their day and listen deeply to each other. While you may crave a break from thinking about your caregiving duties at the end of the day, it’s important to share basic insights with your partner about how you are spending your time.
If one caregiver feels overburdened or marginalized, resentment can grow. “You aren’t helping,” can become, “You don’t care.” Resentment can lead to hostility and damage the quality of the relationship. Children pick up on this tension and it can sometimes affect them—they may have trouble sleeping or experience behavioral setbacks due to this stress. If you’re already in this situation, you know it can be self-perpetuating. Anger and resentment can impair communication and lead to more frustration. But it doesn’t have to continue in this way.
With any relationship, there is give and take, and there may be times when your balance goes well and times when it’s a disaster. But you can reset the balance and establish a new status quo. We all only have so much time and energy, so as you make a plan to divide and conquer, consider what you need. It helps to consider all the strengths and weaknesses of your caregiving team.
If one person is staying home and one is at the office, there are still ways to outsource tasks to the working spouse, such as insurance paperwork, scheduling appointments, or research. One parent may be more extroverted and enjoy the process of interviewing babysitters or informational interviewing parents who have been in your shoes. The more introverted parent may prefer tasks that can be done online or independently. If both caregivers are working outside the home, and paid caregivers are helping at home, you may want to invest time in their training to maximize their competencies.
A clear delineation of your responsibilities will set you up for success. If you have been at this for a while and are already feeling burnt-out or resentful, set the stage for a discussion by finding a time to talk. Do not let these concerns come out late at night unexpectedly or wait until you have reached your limit to vent frustrations. If you want the conversation to be productive, you need to speak up when you are both calm and have the energy to communicate well. When you talk, use “I” statements, such as “I’m overwhelmed,” or, “I’m unhappy that I do not have enough time for .” Have some specific and realistic ideas for change, and remain open to your partner’s suggestions. Try to assume the good intent in your co-caregiver even if he or she has not been there for you in the ways you have wanted. Physical affection can help to heal feelings of resentment.
The happiest parents I have worked with had a plan for division of labor and didn’t hesitate to share it. I once asked a caregiver about a patient’s home nursing care, and before I could finish the question, they said, “Oh, we’ve got to get my partner on the phone; he manages this.” Even if a division of labor is unequal, having a clear plan implies a mutual understanding and visibility for all labor.
Other times, I’ve met with caregivers who were less forthright about the caregiving dynamic between caregiving partners, and as a result, I misunderstood who was managing what in the household. If you are not normally the one to take the child to a visit, or not the parent concerned with the child’s day-to-day care, it’s better to tell the doctor what you don’t know rather than make a best guess to make it seem like you know more than you do. If you don’t speak up about what you don’t know, this hampers my ability to understand your child’s condition and may lead to misdiagnosis, an unrealistic plan, or the wrong prescription or referral. Just as you benefit from knowing who does what, your care team benefits from an understanding of who is an expert at what part of the caregiving and what’s happening in your day-to-day life.
Your Outer Circle
One of my patients, Neal, was having a really hard time with severe ulcerative colitis. At only twelve, his colon had become so inflamed that he had a lot of pain and malnutrition, but this was not even his chief concern. His case was so difficult, he required placement of an ostomy. Surgeons had redirected his colon, so instead of having a bowel movement the typical way into the toilet, his bowels emptied to a bag attached to his abdomen.
As you can imagine for a tween, having a bag of poop attached to you can be difficult on many levels. Practically, it affects how you move, and affects your comfort and clothing. You worry about your looks and smell even more than most children your age. And you may need more help than you want to have, which is particularly difficult for an adolescent who wants to explore their independence.
This is why I encouraged Neal’s mother to bring in more family members for training. She had a job and other children—inevitably I thought someone may need to know how to use an ostomy bag other than Neal and his mother.
For this family, as for many others, when I urged them to broaden their support network, I got the hard stop. There was no one else the mom and child trusted with this sort of thing. As the family broke it down, I learned that the dad was too squeamish, the grandmother made rude comments, and the older brother made the child feel embarrassed. “It’s just me,” the mother insisted.
Each family draws the lines differently. There are true partners in caregiving—your inner circle—and then there are others who are part of your household’s everyday life. Your outer circle may include people not genetically related to you—good friends, neighbors, business partners, babysitters, and anyone who is part of your daily life.
For this family, we ended up deciding that the school nurse was willing and able to serve as an extra resource. Since she was physically present at times when Mom wasn’t, we could make a plan for her to take the ostomy care to the next level and add more support to the family, though it wasn’t easy. The nurse’s office wasn’t private enough and the single-stall bathrooms weren’t large enough, so we ended up asking the principal for help finding an appropriate place.
Our relationships with our outer circle can be complicated, and amidst a challenge, even more so. This family was not unique in identifying obstacles to gaining support from other family members. Practical issues like schedule and consistent availability can preclude involvement. Emotional barriers can come up, like insensitivity or lack of acceptance.
