Caregiver Burnout- Who Me?

I think I have been tired for three years. Maybe four.

I can never get enough sleep. Sure, there are moments when I feel rested, but it doesn't last long. Whenever there's an evening event or extracurricular activity outside of our normal routine, my first reaction is to question if I will have the energy to go. I talk myself out of many things for this reason.

Why am I so tired?

Sure, I am busy. Many adults with children are busy. While other moms' schedules are full of sports and or recreational appointments, our calendar is filled with dates for medical appointments, insurance calls, and pharmacy pick ups. Weekly, at minimum, there is some aspect of her medical care that requires a phone call or a trip somewhere.

Besides being tired and busy, I feel stressed often. There are moments when my stress is understandable. When my 13 year old daughter with special and medical needs is sick, her care intensifies. On a typical day, I remind her to use the bathroom to avoid accidents. I give her minimal assistance with personal hygiene. She needs help putting on her foot braces, placing her bi-pap on each night, and taking daily medications.

When she is sick, her four nebulizer treatments and two vest treatments a day easily double. My daughter has to be monitored continuously at night via a pulse oximeter and checked frequently throughout the day. I'm on duty constantly in an illness as her breathing can change quickly. Of course, that brings about exhaustion, stress, and anxiety for weeks at a time, several times a year.

A trusted person in my life recently told me, "You have been intensely caring for a child for 13 years. At this stage of your daughter's life, she should be asserting her independence and wanting to spend time away from you. Because of her disability, that isn't happening, and you are wearing yourself out. You may not realize it, but you are burning out as a caregiver."

I had never considered myself a caregiver much less one who is burning out. I see myself as a mom doing things required of a parent. Yes, I feel tired and stressed, but I don't always feel that way. When I read about what a caregiver is (a person who regularly cares for a someone needing help with activities of daily living), I have to admit that maybe I am both. I'm a parent and a caregiver to a child with a disability, who couldn't manage without me. It's my honor to serve her and help her. Still, I must be honest that caring for someone for 13 years has taken its toll on me.

Time for a Change

Things have been different since our trip to Mayo Clinic about three months ago. We met with several professionals there who were not only concerned with Jaycee's respiratory issues but also concerned with me.

A social worker on the team asked, "How much support do you have?"

I didn't know how to respond. Rarely has a professional ever asked about myself. I am seldom asked if I can take on another responsibility for her care too. It's assumed I can manage another step in her care, a new piece of medical equipment, or another medication. It was awkward to talk about myself, but I'm grateful for it. It opened the door for me to really think about what I need to keep going as an effective caregiver.

As Jaycee's parent, I will do anything she needs. I will do breathing treatments every 4 hours around-the-clock, barely getting any sleep. As a caregiver, that's not a great long term plan.

I've done much soul-searching and researching about my daughter's care, my role as her caregiver, and my own health since our appointment.

The Cleveland Clinic website has this to say about caregiver burnout: It is a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are "burned out" may experience fatigue, stress, anxiety and depression.

 These are signs of caregiver stress from the Mayo Clinic's website: 

As a caregiver, you may be so focused on your loved one that you don't realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

• Feeling overwhelmed or constantly worried
• Feeling tired often
• Getting too much sleep or not enough sleep
• Gaining or losing weight
• Becoming easily irritated or angry
• Losing interest in activities you used to enjoy
• Feeling sad
• Having frequent headaches, bodily pain or other physical problems
• Abusing alcohol or drugs, including prescription medications

I don't have every characteristic, but I have enough to be aware that change is needed.

Over the past couple of months, I have been looking at ways to help myself as a caregiver. The changes have been long overdue. I've been letting some things go when I need to rest (hence the longer amounts of time between posts on here). We are in the process of getting actual nurses in our home to help with Jaycee's care. Things in our house are going to look different over the next few months. Change is hard and scary, but it is needed.

I want to be the best parent and caregiver I can be. I'm thankful for the people who have challenged me to be that person. If you are feeling burnt out too, I hope you can make some necessary changes for your health and the person you are caring for. 

You Don't Want to Miss This Life

I remember many things about my daughter when she was a baby.

There were dozens of frilly dresses and cute outfits hanging in her closet. She looked adorable in all of them. I enjoyed dressing Jaycee up and fixing her brown strands of hair.

She made the sweetest little noises and had a weak cry that I never strained to hear.

There were early milestones to celebrate. Sitting up, walking, and climbing steps were each documented with videos and pictures. The milestones all came later than expected but were exciting nevertheless.

My husband and I held Jaycee often and showered her with love like any other baby. Perhaps, we did so a bit more as she underwent two different open heart surgeries before her third birthday. The uncertainty of her future was never far from our minds.

My daughter loved Barney as a preschooler. I got to know many of Barney's hit songs. I also became intimately aware of Mickey's need for Toodles every episode.

Though the years have passed, Mickey and Barney can still be heard occasionally on Jaycee's iPad. Hearing Barney sing about ice cream and cats takes me back. I miss the days when my daughter was little. Those times when she was light enough for me to pick up and spin around while she giggled with glee.

Jaycee is a teenager now. Her clothes are still plentiful and cute, but the frilly dresses are no more. After she chooses her clothes, she rummages around her hair basket and hands me a ponytail or hair barrette indicating her preference for the day. I obey her wishes like a good stylist.

She finds ways to communicate when verbally she can't. There are many gestures, grunts, and signs that I usually decode easily. There are some things through repetition she has learned to say. "Momma's mad like a hippo," for some reason is one such thing. Of course, she knows the lyrics to 'Baby Shark,' much to her brother's dismay. Her speech isn't clear enough to say everything she wants, but she tries hard and keeps making progress. Her cry, which occurs mainly during necessary medical procedures and tests, is now loud and breaks my heart a bit.

We have had different milestones in the past few years: the first time using a razor, first school dance, and first time cooking green beans independently.

Even though she's growing up, Jaycee still loves to be hugged and kissed. She sometimes gestures for us all to have a family hug. When she spots me sitting on my husband's lap, she yells for her brother, "Bubba, pile on dad!" My husband then finds himself holding all of us within seconds of her announcement.

Thirteen years ago, a doctor pointed out everything on Jaycee's newborn body that indicated Down syndrome. I cried about those differences. The doctor gave predictions about her life, and I worried what it would mean for she and I. When I researched Down syndrome, discouragement came with every word read.

In all the information I received, I never heard: "You don't want to miss this life." I would have benefited from someone telling me just that. My life with Jaycee would be great, and I wouldn't want to miss the chance to be her mom. I wouldn't want to miss all the love and awesomeness that lived inside my daughter.

I wasted too much time having negative emotions early on. Eventually, Jaycee's diagnosis faded into the background. She alone was what I saw and thought of, not the Down syndrome. She's more than her diagnosis after all.

If there's one thing I could tell a worried mom of a child with a Down syndrome diagnosis, it would be this: You don't want to miss this life.

It will be different and sometimes challenging. But, it is good. Our family is missing nothing.

October is Down syndrome awareness month. Down syndrome is a genetic condition when there are three copies of the 21st chromosome instead of only 2.