Living with a child diagnosed with type 1 diabetes can be an emotional journey for parents. Beyond the daily management of the condition, the emotional toll it takes on parents is profound. Understanding and addressing the mental health needs of these caregivers is as crucial as managing the physical aspects of the condition. In this blog post, I talked about the importance of mental health support for parents navigating the complexities of type 1 diabetes in their children.
Emotional Impact:
The diagnosis of type 1 diabetes in a child often triggers a whirlwind of emotions for parents – shock, fear, guilt, and even grief. Coping with the constant vigilance, fear of hypoglycemia or hyperglycemia, and the long-term impact of the condition can take a toll on mental well-being. When my son was diagnosed I cried daily for weeks. Most times I tried to hide it but there were some days when he was upset that we would cry together.
When my daughter was diagnosed 14 months later it was and traumatic emotional period in our lives. We did not have to go through all the learning again but the emotional impact was just as hard.
Thought out the years I have gone through the stages of grief.
Grief:
Shock and Disbelief:** Initially, there might be shock and disbelief, struggling to accept the reality of the diagnosis. It can feel surreal, as if it’s happening to someone else.
Overwhelming Sadness:There’s often a profound sense of sadness, mourning the loss of the child’s previously perceived ‘normal’ life, and coming to terms with the challenges ahead.
Fear and Anxiety: There is so much fear and anxiety about the uncertainty surrounding diabetes, handling school, severe lows, dka, your Childs mental health, sleepovers, worries about them getting teased/bullied, worries about their future health, and the fear goes on and on.
Sense of Loss: You may experience a sense of loss for the life you imagined for your child, grieving the absence of a carefree existence without the complexities of managing a chronic illness. I remember feeling a huge longing to go back to “the day before”. We have a picture of my son in the car looking at a book while we were getting gas. Whenever I look at that picture I wish for “before”
Guilt and Self-Blame: Some might grapple with feelings of guilt or self-blame, questioning if they could have done something differently to prevent the condition. I know that there is not anything I could have done differently but in the beginning it was on my mind for sure.
Overwhelming Responsibility: There’s a sudden overwhelming responsibility to navigate the complexities of the condition and provide the best possible care for their child. I have always been a responsible person and I think being a nurse and seeing patients with the consequences of uncontrolled diabetes has heightened my feeling of responsibility.
Isolation and Loneliness: This journey can feel isolating, as others may not fully understand the emotional turmoil and challenges faced by us. They will ask “Is it stable yet?” Why do you not get full nights sleeps? In the beginning I was often angry when people would say things that were just not true about type 1 diabetes. I have now accepted that others will never understand as they are not living it. And that is ok. I will still do my best to educate but it is The T1D community where I feel a sense of belonging.
Stress and Burnout:
The relentless demands of managing diabetes – monitoring blood glucose levels, administering insulin, tracking food intake, and ensuring a balanced lifestyle – can lead to chronic stress and burnout in parents. This stress affects not only their mental health but also their ability to provide effective care for their child.
Importance of Support Systems:
The level of support for parents is not equal depending where we live. I am extremely grateful that we live where we do and we have resources like private insurance for counselling. When the kids were diagnosed we had some counselling for them and for myself. Throughout the years we have accessed professional help a few different times. Establishing a support system is essential for parents. Connecting with other caregivers facing similar challenges through support groups or online communities can provide a sense of belonging and understanding.
Back to therapy. I highly recommend it and I think all parents would benefit from the right professional to talk to. Going through a diabetes diagnosis is TRAUMATIC. Even more so if your child was in DKA and needed to stay in ICU.
I recently attended a conference called Kids n Us. The guest speaker Dr. Tracy De Boer explained different reasons for needing counselling. First obviously is for when you are in emotional/mental distress. Secondly though can just be for maintaining and preventing relapses. Lastly she mentioned you can receive help for “Levelling up” which I thought was a neat concept.
Strategies for Self-Care:
Encouraging self-care practices among parents is crucial. From mindfulness techniques to engaging in hobbies or activities that bring joy, prioritizing their mental health allows parents to better support their child with diabetes. I often felt like my anxiety was contagious. When I was struggling my kids struggled more. When I worked on my emotional reactivity, anxiety and depression I became calmer. I was not yelling as much or running to my bedroom slamming the door. Being a role model to them is important to me. So if I show that I am important to take care of I hope they will feel the same about themselves.
For me self-care has evolved. When I first when on a stress leave my psychologist encouraged exercise. I had gained 60 pounds from stress eating and not being active. I needed to get myself healthy. I feel much better when I eat healthy. Avoiding sugary drinks, sweets, fast food as much as possible. I also ended up giving up coffee. The caffeine seemed to have me more on edge and I have switched to drinking green tea. Everyone is different so explore what strategies you enjoy and what are the things that make you feel at your best.
Conclusion:
The mental health of parents caring for a child with type 1 diabetes is an integral part of holistic care. Our emotional, mental, spiritual health and environment all impact us. Addressing the emotional well-being of us as caregivers is essential for our own health and for providing the best possible support to our children. Through proactive support systems, self-care practices, and open communication, parents can navigate this journey more resiliently, ensuring a better quality of life for both ourselves and their children. Diabetes is hard. My motto is if something is not working try something different.
Doing Diabetes Different 