The Mind and Emotions of Caregivers: The Challenges of Mental Health

I am a mental health professional. I am a mom. I parent a child who is considered medically complex and medically fragile. I am also the primary caregiver for my child.

My husband and I learned about my daughter’s issues at 13 weeks gestation, and this is when our special needs parenting journey began. This is also where I propose mental health care for parents should begin — as soon as you know your child’s diagnosis or that your child will have health issues.

Our Story

Pregnancy comes with so many preconceived emotional reactions and societal norms. You’re expected to be happy, excited, open, and anticipatory. What happens when you find out that all the societal norms don’t match your pregnancy journey because of your unborn child’s medical diagnoses?

Initially, I didn’t have any answers, but I knew the benefit of talking to professionals who were familiar with emotions and what was considered healthy. I ended up making a phone call to a perinatal hospice and palliative care program. Now, most people read “hospice” and think no aggressive treatment. However, with perinatal hospice and palliative care, birth planning is interdisciplinary, guided by the parents, and can include life-saving measures. Finding that program was one of the best decisions I ever made. I found someone who had the professional knowledge to tell me I wasn’t crazy.

The counselor helped me sort through this myriad of feelings and let me know that my confusion, anticipatory grief, sadness, anger, and everything in between were all normal. My perinatologist also referred me to an independent program that was closer to home. A labor and delivery nurse was assigned to visit my home and give emotional support throughout the rest of the pregnancy.

My daughter was born and everything the doctor said about her health was correct except one thing: her will to live. My daughter was delivered with a pulse, survived a standard hospital stay, and came home. My maternity leave was spent scheduling and attending doctors’ and specialists’ appointments. I had been on bedrest for three weeks, so I only had nine weeks of leave remaining after my daughter was born. During that time, we had 25 appointments between my daughter and myself. There was no rest for me before I returned to work full-time. I was exhausted and fatigued. My strength started to fade as her care became more complicated. Imagine that one frayed string at the bottom of a garment that gets tugged and the unraveling begins.

I quit working for the first time right after my daughter’s second birthday. The overwhelming fatigue and exhaustion were causing me to be inefficient at home and at work. Don’t even mention me taking care of myself. I started cancelling my own wellness appointments so I could use my time off to attend my daughter’s appointments. My anxiety and depression were increasing. We had some couples counseling and I had some individual counseling during this time, but it was short-lived due to my daughter’s medical care. Our insurance did not cover nursing care for her, and she did not qualify for any other services. I never got a break. The unraveling became worse.

My daughter entered school at three years old, and I was excited because she was finally doing better and I was going back to work. However, my daughter was hospitalized seven times in eight months during her first school year. The hospital stays were LONG and I was never at work. I lived at the hospital with my child having to verify meds, allergies, and medical history. I found myself crying all the time. My hearing was hypersensitive, and everything made me nervous.

I knew emotionally and mentally that the weight of her care was too much. I would ask to talk to the social worker, chaplain, and nurse case manager. They all would say, “You do such a good job with your daughter.” I would explain, “I can type a list of information and answer your questions, but I am falling apart inside. I need help caring for her. I am falling apart. I am about to break.”

I ended up in the hospital two days after that conversation. I didn’t get the mental health help I needed until my daughter was four years old. I knew I needed it sooner, but I put everything and everyone else before myself.

Why Do I Feel the Way I Do?

Parents and primary caregivers of children with medically complex health or who are considered medically fragile are more prone to feelings of anxiety and depression. Parents and caregivers are also more likely to be diagnosed with generalized anxiety disorder, major depressive disorder, bipolar disorder, and post-traumatic stress disorder secondary to their child’s medical trauma. These emotions and mental health issues DO NOT MEAN you consider your child a burden or don’t love him or her. These emotions and mental health issues for caregivers are, most often, a by-product of an inadequate support system and limited services.

Mental health and emotional health are just as important as physical health. The brain is an organ made up of many chemicals, neurotransmitters, and tissue. Just like the pancreas and heart are organs that can become ill and must be treated, so can the brain. When the heart is sick, you visit the cardiologist, NOT the dermatologist (skin doctor). So, when the mind and emotions need attention, there are several professionals that we can visit.

Finding the right mental health professional for your need is like trying on new shoes. Counselors and therapists specialize in certain areas: Mood disorders, Trauma, and Grief are a few examples. Also, if a therapist’s approach or personality doesn’t suit you, try another. Please don’t suffer in silence or try to cope alone. If you were diagnosed with a mental illness prior to having a child with complex health, you are prone to having a flare of symptoms once you become a caregiver due to the additional stress. Don’t ignore your symptoms.

Mental Health Professionals and Support 

The words counseling and therapy are used interchangeably in the mental health profession. One thing you should look for with a mental health professional is some guidance with your point of view regarding your situation. Also seek information to assist with developing positive behaviors, habits, and thought patterns. Beware of the professional who does not plan how your sessions will go or who does not ask you to work with him/her to set goals for your therapeutic experience.

Some of the professionals you might encounter include the following:

• LPC—Licensed Professional Counselor: Master’s degree or higher, professional license by state, trained to diagnose and provide counseling.
• LMHC—Licensed Mental Health Counselor: Master’s degree or higher, professional license by state, trained to diagnose and provide counseling.
• LCSW—Licensed Clinical Social Worker: Master’s degree or higher, professional license by state, trained to diagnose, provide counseling, case management (resources), and advocacy.
• Ph.D. or Psy. D.—Clinical Psychologist: Doctoral degree in psychology, professional license by state, trained to diagnose, provide therapy.
• M.D.—Psychiatrist: Medical doctor with specific training in diagnosing and treating mental illnesses. Can prescribe medicine, rarely provides counseling, but can depending on credentials.

Support Groups

Sometimes a mental health professional runs a support group. Support groups can be general or very specific, but all attendees have something in common. Support groups share resources and valuable information in a safe place. There are some groups that are national or international and have local chapters all throughout the USA and different countries.

What Are You Going to Do?

I know there is a stigma regarding mental health and psychiatric medication. I believe your health is between you, those who love you, and your physician. I don’t think a patient with cardiac disease is weak because he or she takes medicine to keep the heart beating in rhythm. I don’t think a patient with diabetes is weak for taking insulin. Therefore, if you are appropriately diagnosed with a mental illness or mental health disorder and the doctor recommends medication, I would call you BRAVE AND COURAGEOUS. I would think you love yourself and your child.

Not everyone needs medication, but some patients do and that is fine. Ask your doctor questions. Be informed. If you experience side effects, tell your doctor, just DON’T GIVE UP.

Inpatient and outpatient programs are also available. If you feel you are no longer safe or you can no longer care for yourself and your child, you can be admitted to an inpatient mental health program until you are stable. That admission does not mean you will forever be labeled mentally unstable. Your child needs you to be at your best as a caregiver.

Caregivers go to the moon and back advocating for our children, but we don’t fight for ourselves as hard. Do what you must do to get yourself mentally and emotionally healthy. You would be surprised at the number of professionals I have met during my career. I am glad they have come to see me. They are healthy and functioning with their therapy and meds all while making the world a better place.

Self-Care

Everyone is talking about self-care. Is that a dream for caregivers? Self-care looks different for caregivers who have children with complex medical needs. At times, a night out with friends, a date night with our significant other, or a pedicure is perfect. However, often, time out of the house is limited due to caregiving responsibilities.

Our self-care involves an extra helping hand around the house. I learned this tip from a support group: Always have a few things in mind to readily say to someone if they say, “If there’s anything I can do for you, just let me know.”

Here are a few of those things: a gift card to your local grocery store, cook a meal and bring it over, a gas card to the local gas station, an Amazon gift card, help me with laundry, watch the other kids so I can nap, gift certificate for housekeeping, run errands (post office, pick up groceries — text them the list), drop other kids off at sporting activities. You get the idea.

Take care and be well! Caregivers rock!

Denie Sidney graduated from Washington University in St. Louis with a BA in English Literature and African & African-American Studies. She also obtained her MSW at Washington University. She is a mental health social worker, the proud mom of Mattison, and Marvin’s wife. Mattison has Mosaic Trisomy 9, Partial Trisomy 9 with 9q22.1 deletion and Dandy-Walker Syndrome. ALL 3 diagnoses are considered rare. She became a stay-home mom from 2012-2014 and again in 2015 to the present to care for Mattison and now her husband, who has a degenerative neurological condition. She loves helping others and her passion is mental health support of special needs parents. She is a social worker tried and true, so helping with resources, grants, and special needs advocacy fills her with much joy.