For the month of April, we are exploring mental health, and what mental health means for a CHD family.Today we’ll hear from Dr. Creel, a Certified Grief Recovery Specialist, as she shares her experience with CHD families.
Fifteen years ago, when I first began my work in the field of working with heart patients, both young and old, I met with a family whose 7-year-old son and 12-year-old daughter both had to have pacemakers implanted. The diagnosis came fiercely and suddenly and the parents were understandably devastated, anxious and scared. I soon realized that as rapid as the diagnosis was given, there were major changes that the family were making, deciding to home school both children, selling their home and moving closer to the hospital, and mom deciding to quit her job were just a few. Not having much experience in this area I realized that this family’s world was turning upside down quickly, and it was quite obvious, to me anyway, that everyone in the family was feeling out of control, helpless and more importantly that mom and dad were trying to feel in as much control as they could by making personal choices and changes. Ironically both children were calm when they were not around their parents.
This was my first introduction to families dealing with heart conditions. As I realized then and I realize today day after day, after working with thousands of families, dealing with a medical diagnosis, whether it be preexisting, a new diagnosis, a fetal diagnosis, or a terminal diagnosis, the journey is a personal and very private one.
My role in working with families has been an incredible, fantastic, painful, exhilarating, enlightening and humbling experience, one I would not ever trade. Everyday I learn from my patients. I learn that it’s okay for my children and parents to be scared, that it’s ok for my children to not want to talk about it, that my parents need to talk about it, and that the fear of death and dying many times looms over head.
I have been lucky enough to see my heart children go through phases in their young lives, first seeing a child from the young age of 4 or 5 up to the wonderful young adult age of 18 and 19 and beyond. Within the past several years I have been privileged enough to be invited into the adult heart world and in the world of parents pregnant with a heart baby and I try and help all transition from one life to a completely different one.
Some of the issues I professionally experience are; Pre surgery concerns, fears of unknown, the number one question I get asked is about pain and scaring, I try and look to the family to see what kind of support there is, children that are sheltered or exposed and what a diagnosis looks like for these children .Post Surgery concerns. I look to see who will be available with recovery and will the child miss school, causing added stress. I also want the schools to have an understanding as to what is going on with the child. And ultimately I look at the communication pathway between child and parent.
There are certain age related pathologies I see with heart patients, From birth to 3 years I see parental concerns, adaptation into society concerns and concerns on the parents part of the child’s future. From 4 to 7 years I see fear, anger, and feelings of being immortal. From 8 to 13 years I see anger, withdrawn behavior and confusion around having a heart condition. And from 14 to young adult I see sadness, fear, anxiety and worry.
With my heart transplant patients I see that most experience a state of confusion/auto pilot, along with the parents. Many times I see complete acceptance and a sense of appreciation with no pressure. With others I see a lack of acceptance, a sense of “living on borrowed time”. I see unusual closeness and beautiful connections between mothers and sons and fathers and daughters. And many times I hear that there is a feeling of never feeling satisfied and always having to prove something, a pressure to perform for the donor family.
Many times I wish the family would be extra careful in what they say and when they speak about their child’s condition. Little ears can have big curious thoughts and those thoughts can be very scary when they are misunderstood or not explained. The psychological perspective with illness and children is that children should be told about their illness on the level they can comprehend. Many parents know if their child worries or gets anxious and this needs to be taken into consideration when speaking to a child about their condition. Some parents forget that a child thinks in child thoughts and are not quite at the adult level of understanding as bright as child may seem. I also encourage my families to never use the word defect. I had an adult patient whose kindergarten teacher told him he had a heart defect and even as an adult he thought he was defected on some level. It was only after we spoke about the impact of this word that he understood that cars, planes, inanimate objects have defects, not people. The relief on his face was priceless.
I find many of my adult patients have hidden dark thoughts of fear of death. More than many of my adult patients and parents of heart kids have a looming feeling that
“the other shoe is about to drop”. I hear “everything is going so well, it feels strange”. I find that there tends to be depression and anxiety, which many times are 2 sides to the same coin, which often occur within the same time frame, around the unknown and the fear of being out of control. And the desperate need to be in control of something, of anything because it soothes the anxious mind. One out of every 2 people who has had a heart attack experience symptoms suggestive of depressive disorder during or slightly after recovery. Many times the depression and anxiety tends to be contagious and parents and patients have to be aware of their fears and feelings when around others because of this contagious air. Many times there is an indifference, a guarded or defensive sense with issues around trust and vulnerability. For my adult patients, they know that they look or feel different, that they are no longer “healthy” which causes low energy, low interest in things causing depression and anxiety.
I also find that being in a space of having a child with a heart condition or having a heart condition is a very lonely place. It is a country that unless personally visited, cannot be explained or created in the mind of the visitor.
I stress the importance of clarity through communication, how important it is to talk about fears, and confusion and anger, regardless of the age, or the relation to the patient. Many times the more we speak about something, the more we look at it from different angles, the less threatening it can become. (This is one reason therapy is so vital in some situations). I speak about post traumatic stress disorder and how triggers of fear, confusion and anger (i.e. going to the doctors office, hearing that someone died of a heart condition, your child having a cold and you think is so much more than a cold, siblings worrying about medical appointments), can put you ten steps behind, but the importance of being aware of these triggers and managing them is what counts. I stress the importance of self-respect and respecting all the feelings that come with having a heart condition and the importance of respecting an emotionally heavy heart.
I stress self-care and the incredible importance of taking time to take time. And knowing what feels good because my families and patients for sure, know what doesn’t. I use my term “strength-o-meter”, in that you have to ask yourself how do I feel today, do I have the strength to accomplish things and to function for myself or my family, for my child or is it a day of relaxation and self care? I stress the importance of speaking with others who have, or will be experiencing, the same journey. No one likes to feel alone or isolated.
But ultimately, and one of the most important points to be understood by everyone I see, is the importance of the balance between illness and health. Balancing the good thoughts with the bad thoughts, the good times with the bad times and the fears of the unknown with clarity and control, this is the key in managing life in and of itself. Acknowledging that one can be off centered but find their very own balance that works so life can be fulfilled, enjoyed and a life worthwhile living is what I always want my patient, young or old, to hold onto.
Beth Creel holds her PhD in Clinical Psychology and is a Certified Grief Counselor. She has been with the Childrens Heart Center for 15 years where she works with individuals dealing with cardiac issues. She works with parents who are pregnant and are dealing with an unborn child with a heart or other medically compromised condition, children with preexisting cardiac conditions, newly diagnosed heart patients, emotional issues around upcoming cardiac procedures and death and dying concerns. Dr. Creel also works with adults and children dealing with cystic fibrosis and addresses the complications this illness poses on all levels. In addition Dr. Creel also counsels families dealing with gastrointestinal conditions such as Crohn’s disease, Ulcerative colitis and Celiac disease. Dr. Creel received her combined Master’s degree and PhD in Clinical Psychology at the California Graduate Institute in Westwood, California and received her BA at California State University Northridge. Her background has always been advocacy and education of individuals and families struggling with medical and mental health issues. Dr. Creels approach in working with families is to identify what the family/patient understands about the medical issue, setting realistic goals for coping and then identify post-traumatic triggers and how to effectively deal with this state of mind. Dr. Creel also has a private practice, The Grief and Recovery Institute where she concentrates solely on grief and loss.