NeuroMindfulness for care givers - How to build up resilience as a Type 1 Diabetes parent based on the BMR Framework

Our son was diagnosed with Type 1 Diabetes (T1D) two years ago at the age of 9. Having a child with diabetes creates a lot of stress, very acute stress due to critical changes in the blood sugar and also prolonged stress due to lack of sleep, difficulties in diabetes management, worries about the future etc.
Studies confirm that parents of children with T1D experience a significant level of stress that may even affect the child’s glycemic control. Higher parental stress is also associated with higher child-report of stress. We all experience this: If I’m stressed as a parent, my child will feel it too. As in the majority of families, the mothers are responsible for the bigger part of the diabetic care of the child, the mothers are also more prone to anxiety and fear of hypoglycaemic attacks. I myself can definitely confirm that my experienced stress did rise a lot with the diagnosis. Combined with the lack of sleep an unsustainable state. On top I’ve seen in myself and other parents the lack of a healthy self-care, focusing all the love and attention to the child in need. A vicious cycle, as giving with empty batteries won’t work for a longer amount of time.

But diabetes isn’t a sprint, it’s a marathon. And as a marathon needs a proper training strategy, parents of children with diabetes and here especially the mothers, need a proper strategy how to also take care of themselves and build up their resilience. The whole family as a system will benefit from this.

Where to start?

As a Master Neuromindfulness® Coach I experienced that the BMR (Body – Mind – Relationships) resilience framework the Neuromindfulness® Institute has developed (based on an article of Tabibnia G. And Radecki D.: Resilience training can change the brain) is the perfect basis. Based on it, you will find in this article an adapted BMR framework for parents with children with diabetes. It’s backed up by science, holistic but still neat and easily applicable. Exactly what stressed parents need.

Let’s dive into it!

The 3 letters stand for B – Body, M – Mind, and R – Relationships. In order to build up your resilience and stay balanced during the marathon as a T1D parent, all elements need to be taken proper care of. You will not find recommendations for the actual Diabetes Management in this article, as this belongs into the hands of professionals. My focus is to provide you with proven strategies how to build up your own resilience and release some of the care burden.How can you use this framework? I invite you to explore it with curiosity, exploring what is already present in your life and what might be areas where you have a clear deficit. As habit changes are only sustainable if you don’t overwhelm yourself, I recommend that you focus on maximum 3 new elements at a time.

BODY – The most relevant elements are SLEEP, NUTRITION, EXERCISE and BREATHING.

SLEEP

Research suggests 7-8 hrs/night to keep our brains healthy and to be emotionally balanced. “No way” you might say as a T1D parent. I understand. Checking my own night logs I can see that in the last 50 nights we had only 15 nights with uninterrupted sleep. This means that during 35 nights either me or my husband had to get up 1-4 times per night to manage the blood sugar (either giving extra sugar due to low blood sugar or giving extra insulin due to high blood sugar, or both, or checking due to technical failure of the CGM – Continuous Glucose Monitoring System). So basically, I am back to the first year with a baby. It’s draining. Whereas you will not be able to really change that – blood sugar corrections are a must and can’t wait – there is a lot you can do to improve your sleep and rest:

• Adjust your sleeping times: I accepted the fact that I will need to get up often in the night, so I am going to bed a lot earlier now. This might mean more boring evenings, but for me an overall happier life.
• Power napping, Deep relaxation or Yoga Nidra: On those days I am having a big sleep deficit (with effects on my mood and cognitive abilities), I try to squeeze in a 20 min session of power napping, deep relaxation or yoga Nidra (both guided practices allowing a state of deep rest). It’s a game changer and allows be to be again a better version of myself.
• Take turns with your partner: For us it works best to clarify before the night who is in charge. This allows the other partner to decrease the internal alarm system and get a better rest.

NUTRITION

In order to strengthen your resilience you should focus on HEALTHY FOOD, STAYING AWAY FROM SNACKING AND JUNK FOOD and GOOD HYDRATION.

 Snacking and junk food can be one coping mechanism trying to handle the higher stress levels. Sleep deprivation is on top associated with overeating, poor food choices and weight gain. So, what can you do about this vicious cycle? First off all seeing and understanding this coping mechanism instead of beating yourself up for it. You might ask yourself then: How can I find the motivation to make better choices and change my habits.

What helped me?

• Finding a purpose bigger than myself: Wanting to be a good role model for my child. I wish for our son to make healthy food choices, because this will improve this diabetes management in the future significantly. So, it starts with us as parents.
• Decrease friction: It also helped us a lot to simply not buy unhealthy snacks and junk food anymore and finding healthy alternatives we can all turn to.

EXERCISE

Exercise leads to BDNF production and improving mood and your response to stress.
I admit – this is my Achilles heel. Whereas I know how important exercise is for myself, it’s most of the times the first thing I cancel from my agenda. Why is it so important? Exercise leads to higher levels of brain-derived neurotrophic factor (BDNF), which promotes neuroplasticity (the ability of the brain to form new pathways and connections), improves learning and memory and decreases stress and anxiety. So, the question shouldn’t be if to exercise but how to make it a sustainable habit. What works best for you? Making it also a me-time, where you can detach from the daily responsibilities and tasks? Making it a time to connect with friends? For me best is to make it simple, quick and accessible.

Here are two ideas:
• Exercise with your child: As excising is as important for his/her life and is known to improve blood sugars, this might work. During the warmer months of the year, we are sometimes together taking our dog out for a run – all 3 benefitting from it.
• Tiny habits: Whereas I will not do 45 mins of sport/day, I can do 15-20 mins. I recently found rebounding to be a great fit. I have a small rebounder in my home office and rebounding with my favourite music is fun and a good training. I can even rebound while working at my desk. What tiny exercise habit can you start and sustain?
• Move to release stress: Acute and chronic stress accumulates in your system and movement is a very effective way to release it. Have you ever seen a stressed dog who suddenly runs around like crazy? That’s stress release! What movement feels good for you? I found shaking very helpful (better not in public :), vocalizing and jumping on the rebounder.

BREATHING

Your direct access to your nervous system. Breathing techniques gained a lot of popularity in the recent years, and with good reason! I found them to be extremely powerful and simple to positively influence my stress levels and overall resilience. An additional motivation for me to really practice and use them was understanding why they work. If that sounds also motivating to you, I recommend to start exploring the topic, for example with this great blog post.

Recommended breathing techniques:
• The most simple: Just pay attention to your breath (How am I breathing right now? Shallow, fast, slow, deep?) and allow it to naturally slow down. This will already decrease tension and improve focus.
• 4 -8 Belly breathing: My go to practice whenever I am stressed – eg looking at the CGM data on my phone seeing that our son’s blood sugar is dropping quickly and he is in school. Or still worrying about something while starting my working day. Or sitting in the office of our diabetologist waiting for the recent results…. Or lying in bed after getting up at night to fix the blood sugar and having troubles falling back to sleep…. Why does it work so well? Exhaling over a longer time than the exhale relaxes the nervous system and the mind through the activation of the vagus nerve, the biggest branch of our parasympathetic nervous system (the rest and digest system). Combining this prolonged exhale with belly breathing is further activating the vagus nerve (because the vagus nerve passes the diaphragm which we are using with belly breathing). By the way, 4 – 8 breathing can of course equally help your child in stressful situations. In our first night in the hospital our son got extremely stressed because the nurses checked this blood sugar and gases every two hours with a painful little glass tube. Practicing 4-8 breathing with him together in these moments helped a bit to ease his stress and he nowadays uses the method himself to calm himself down.

MIND – The most relevant elements are SELF-COMPASSION, GROWTH MINDSET, MINDFULNESS and EMOTION REGULATION.

SELF-COMPASSION

Compassion is the sensitivity towards the suffering of another, paired with the desire to help. So, how can you be self-compassionate as a parent with a T1D child?

• Don’t blame yourself if things are not going as expected: Managing Diabetes is complex, there are so many factors that can influence it. Managing Diabetes feels to me like working with a very moody diva, her mood being influenced by a lot of internal and external factors and having a low tolerance to failure. This means there will be many days where you might feel like you failed. These are the moments and days to cultivate self-compassion. Being patient with yourself, seeing the bigger journey and not the sprint. Again, Diabetes is a Marathon, not a sprint. It also means not blaming yourself for having caused diabetes. Of course I asked myself what might have caused it and I have some leads. Could I have avoided it? Probably not. Does it make a difference now? No.
• How would you treat a friend in this situation? Be as kind to yourself as you would be to your friend. Acknowledging that failures are a shared part of our human existence.
Not convincing enough yet? Read this: Studies confirm, that self-compassion plays a rather significant role in the management of diabetes, and that interventions aimed at developing self-compassion showed success in improving health-related outcomes. So, nurturing self-compassion will benefit all members of your family.

GROWTH MINDSET

Understanding how we can grow from this experience and having the belief that we all have the capacity to learn and grow (based on a concept Carol Dweck developed).

• Flipping from Coping to Co-Creating: Of course, as a parent of a child with Diabetes Type 1 we would love to be able to change the diagnosis. Truth is, we cannot. So accepting what is and working with it will allow us – and our child seeing us as role models – to grow from and with it. This doesn’t mean to deny feelings of grief, of anger, of resistance. Allowing these first (and again and again) is in my experience part of moving into acceptance. I will never forget the moment when I came home alone from the hospital after the diagnosis (my husband continued to stay with our son in the hospital). During the time in the hospital my complete focus was to support our son, to learn and understand what was happening. At home I allowed my first wave of grief to emerge. Grief of what I felt was lost. Allowing my grief brought me closer to accepting what is. Why is accepting so important? As Ginny Whitelaw so nicely describes it in her book “The Zen Leader”: Acceptance is at the cups between resisting situations and being able to use them. Coming from coping (with the stages of denial, anger/rage, resistance, rationalization, tolerance) to co-creating (starting with acceptance and evolving into joy and enthusiasm).  You can find an introduction to the concept here. Yes, it might sound wild, even cynic to write about joy and enthusiasm connected to a condition like diabetes. Still, I invite you to take some time and (allow you to) think about the good things it brought to your child, yourself and your family. How did your child and you grow out of this experience?

MINDFULNESS

I honestly cannot imagine where I would be today without a mindfulness practice. When we ended up in the hospital with our son being in DKA (diabetic keto acidosis) I have had already established a regular mindfulness practice. So, I was lucky to have a foundation during the first extremely challenging months.
Why is a mindfulness practice so helpful to increase resilience?

• Taming the monkey mind: this refers to reducing the burden of ruminating about past stressors or worrying about the future. Most of the times the DMN (Default Mode Network) is active in our brain, as the name already says, it’s the default mode of the brain. When the DMN is active, our minds wander around things that already happened or we think will or need to happen. Additionally, our minds are designed with a negativity bias, which means that we pay much more emphasis on negative information than on positive information. From an evolutionary point of view this makes sense, because the target is our survival – for that we need to be especially alert to potential dangers. In conclusion, we usually spend a lot of the time mind wandering about worrying things. In Buddhism this state is also described as “the monkey mind”. And unfortunately as a parent of a T1D there are so many things you can worry about. Mindfulness practice allows us to learn how to tame “the monkey mind”, as it is training to redirect your attention to the present moment, where you have, at this very moment, nothing to worry about.

• Flipping out of Fight, Flight or Freeze: When we are very stressed our sympathetic nervous system takes over and we get into a state of fight, flight or freeze. Which makes sense for shorter periods of time or confronting a real physical threat, but isn’t really helping when trying to do a good job at diabetes management. A state of fight, flight or freeze is reducing our higher cognitive functions and puts us in autopilot. In Diabetes Management you want to be able to access your full brain power to take the best decision possible. This means learning how to recognize fight, flight or freeze in yourself and flipping out of it is very helpful. My tendency is going into fight, in the sense of getting hyperactive, doing without thinking, doing as a coping mechanism. I invite you to think what you tend to go into when getting into stressful situations around diabetes. Here is a good article to explore fight, flight or freeze further.

• Meditation: You want to give meditation a try? A good start can be one of the following mediation types: Body scan, follow your breath, loving-kindness meditation. I absolutely recommend starting to meditate. It’s important though to know, that the start will most likely not be easy. For me it was therefore very helpful to learn, that it takes around 50 to 100 hrs of meditation practice until you get to a state, where the meditation becomes rewarding in itself. Before that it’s mostly effort and can be frustrating. What also helped me to be less frustrated was to understand, that each time my mind wandered off, followed by me noticing it and redirecting it to the moment, I was practicing similarly to exercising a muscle. So very “messy” meditations are actually a great practice.

EMOTION REGULATION

Learning how to better understand and regulate your emotions can be of great benefit, for yourself and your child.

• Emotion labelling and disclosure: Already the simple act of labelling an emotion and expressing it can already reduce the amygdala activation (fear and stress response) and emotional arousal. This could be for example identifying that a dropping blood sugar makes you feel anxious, followed by you saying to your partner: “I feel anxious because I see the blood sugar dropping and I feel I have little control over the situation”. Research shows, that verbalizing one’s emotions, either privately on paper (eg by journaling) or interpersonally to a confidant, can boost one’s self-concept and self-efficacy, improve understanding of the adverse experience, and provide insight into regulating those emotions. Finding people who are creating a safe space for you to share your story & emotions can be very powerful. I can still vividly remember a very special afternoon where we met another family whose son was also fairly recently diagnosed with Type 1 Diabetes. Both of our families had a rough start, as in their case the hospital turned them down first so that their son ended up in a severe keto acidosis (happily he recovered quickly) and in our case being in this situation in a foreign country (China) was very stressful. Being able to share these stories and our emotions with people who really understood it was very healing.
• Cognitive reappraisal: Cognitive reappraisal refers to reframing an event in order to change its emotional impact. For example, being stuck in a traffic jam can be reappraised as an opportunity to listen to a podcast. A real life example from us is the fact, that our son got together with the Type 1 diagnosis the additional diagnosis of having celiac disease (another autoimmune condition). Cognitive reappraisal helped us to get over this – anyhow we had our questions on the high consumption of wheat and wheat products, so we saw the positive in eliminating all gluten products from our household. In the laboratory, participants who use cognitive reappraisal during a negative experience report less negative emotions and show lower autonomic arousal; similarly, people who report frequently using reappraisal experience less negative emotion in negative situations and exhibit better psychological health.

RELATIONSHIPS – The most relevant elements are STRENGTHENING OF HUMAN RELATIONSHIPS and CULTIVATION OF PRO-SOCIAL QUALITIES

We are social animals. Knowing that you are not alone in this, that there are dear people you can connect with and exchange with, is so important. I am forever grateful to the other parents who helped me through the first year, being there to answer questions (there are so many!), giving tips, sharing resources or simply allowing to steam off frustrations but also celebrating successes! The T1D WeChat group in China with expats from all over China was far more important to me than the exchanges with the physician. The same back in Germany, where I was lucky to find a group of wonderful mothers. We are spread all over Germany and many of us haven’t met in person.
Yet there is so much support and compassion in the group, starting with early morning messages about how we slept (a crucial question!) and how things are going.

STRENGTHEN HUMAN RELATIONSHIPS

This means to connect with dear ones in a meaningful way, offering full presence, active listening and compassion. You have seen my examples above, having friends creating this space for me is very healing. Equally as creating this space for others. Being able to help others in a similar situation gives me purpose and the feeling of doing something good, passing on what I experienced when in need. Writing this article is based on the same wish, hoping to create something of value for others in a similar way. It also means offering the same towards your child and your partner (when you are in a place to be able to do so) in moments of frustration or struggle.

CULTIVATE PRO-SOCIAL QUALITIES.

These are qualities such as Gratitude, Forgiveness, Non-Judgment, Compassion and Altruistic Joy. Some of us are blessed with a good amount of these. For others all or some of these don’t come naturally. I, myself for example find it very difficult to feel altruistic joy and without beating me up for it I know how important it is to cultivate it. Or take gratefulness – How easy is it for you to list now 5 things you are grateful for today (yes, now as you are reading this)? Let’s take it to the next level : List 5 things you are grateful to diabetes for. Challenge accepted?
This might help: The positive effects of Gratitude are very well researched, reducing stress and enhancing psychological, even physical wellbeing. This even works if you don’t share the gratitude with others (you can, though :). But it is important to know that it takes time for the positive effects to emerge. So, the recommendation is to practice at least 12 weeks, for example with a gratitude journal where you write at the end of each day (even the really crappy ones) 3 things you are grateful for. You can find more information on how gratitude changes your brain here.

At the end, I would like to add a few thoughts which are not directly linked to the BMR framework but still might be useful to build up your resilience.

• There is more than diabetes: Diabetes Management needs 24/7 attention – it’s just not an option to ignore the blood sugar for many hours. Also because of this there is a risk that it becomes the center of your attention. Especially if you are in a fight stress reaction with the coping mechanism of doing, trying to control the situation. I experienced this in myself and I see it in other parents, often mothers. For a while it can be a helpful coping mechanism, but after a while you might find yourself being disconnected from your own life. And you might see how your controlling habits are actually disempowering your child and/or your partner. What helped me is to get back to work quickly. It forced me to focus on something else and not pick up my phone to check the blood sugars constantly. It allowed me to have the feeling of self-efficacy and accomplishment even though I felt I was often failing in Diabetes Management. It really concerns me to see that having a child with Diabetes Type 1 affects very often the occupational status of the mother. A study conducted in Germany showed, that the mothers’ occupational status reflected in paid working hours was significantly reduced in the first year after their child’s diabetes diagnosis. Overall, 15.1% of mothers stopped working, and 11.5% reduced working hours. Mothers of preschool children were particularly affected. I completely understand the reasons, but it worries me because of the potential effects on the mental health and the economic situation of the mothers.

• Cultivating trust: In German, we have a very popular saying which is “Vertrauen ist gut, Kontrolle ist besser” – “Trust is good, control is better”. As you might guess by now, my journey in life is to actually reverse this, building on trust as a basis. And here I mean trust in a spiritual sense, having trust in life, in my family, in myself, in others. This means to actively choose to trust, understanding that I have a choice. Looking at diabetes it became even more important as there are so many things I cannot control and where constant worrying about the future will not help. And this doesn’t mean to let go of my responsibility but rather to understand the difference between what I can control, what I can influence and what I can’t control.

• Support each other, don’t compete or try to be right: All too often I read angry and disrespectful comments of parents with diabetes typ1 in social media and it makes me really sad to see this. Because it’s challenging enough the way it is. I clearly see that this anger is coping, is projecting the stress and frustration on others. And while it might feel good for a short while to steam off the anger like this, the ones hurt are parents carrying already their own luggage. How about we wouldn’t take out our frustration on others, but find healthy ways to release them and support each other on our journeys?

• Being vulnerable and asking for help: As the situation might change very quickly with Diabetes, I usually keep the alarms on. Also during work or meetings. I feel better that way and I experienced that it helps me to share this proactively with others, so that they are not surprised about the sudden strange beeping and my instant reaction to this. I never had a bad experience with this approach, actually quite the opposite, others usually react in a very understanding and supportive way.

I really hope that this article created value and that it might help you to become more resilient. I would be very grateful if you would let me know what works or worked best for you and what further recommendations you would add! Let’s keep learning from each other!

If you feel you can benefit from a 1:1 coaching, feel free to approach me.

Wishing you all the best for your Body, Mind, Relationships,
Anna