I write this article to provide an honest insight into a world that you may be familiar with, foreign to, or a newbie. Everyone has a slightly different situation, and my hope is that a few of my suggestions can help your home operate smoothly, provide consistency and most importantly, give respite to the caregiver.
To give you a better picture, here is a little about me. I am a thirty-something mom of two boys. My oldest, Trent, is 12 and Chase is two. I resigned from a fabulous job in Corporate America right before I found out I was pregnant with Chase. I refer to it as a mini mid-life crisis, as I decided to leave my career and upscale community to move to a small college town, further my education and rent a 1930s bungalow! Actually, life was great; I loved the slower pace. Needless to say, I must have been glowing, because soon after, I met a gentleman, fell in love and Chase was born! Unfortunately, his father lives several hours away and the relationship didn’t succeed. I found myself an unemployed single parent in a town where I don’t know a soul, with a baby who was a few months old and barely nine pounds.
September 23, 2010: the day my little blessing came into this big world. Over the course of his first ten months, Chase spent several weeks at our local Children’s Hospital. To spare the details, I will provide the “Cliff Notes” version of our complex health issues. Basically, Chase has been orally averse since birth, which resulted in feeds via an NG tube, now G tube. We are currently exploring various genetic diagnoses, so without an umbrella name to attach, I simply call his needs “complex.” Over the course of the last two years, we have learned that he has vision issues, dysphagia, intermittent brain activity, delayed speech, excessive (daily) vomiting, motility delay, dermatology issues, growth hormone deficiency and hip dysplasia. The good news is that Chase is a very social, active and bright child. He has brought so much joy into my life!
Exhaustion was an understatement. I was counting his every calorie, researching medical conditions and fighting with medical supply companies. He didn’t sleep. No, really, he didn’t sleep. During an average night he would rest 15-30 minutes at a time, lying next to me in a Boppy, hooked up to a feeding pump. For the first several months, if he wasn’t screaming, he was vomiting. I had to leave myself notes to, “take a shower today,” “spend time with Trent,” or “take the trash out.” You know what I am talking about if you have been face to face with severe sleep deprivation. If you are here now, know that I pray for you!
The reason I write this is to inform you about something that for me should have happened sooner than it did. At the longest stretch, I spent 22 days sleeping (with my eyes open) in a recliner at the Children’s Hospital, which was one hour away from my home. Numerous times, nurses would walk in and find me crying. I was scared and tired. Sure, Social Work checked on me, more concerned with my financial situation, to offer a food voucher and see if I was being “harmed” at home. True, these are very real concerns. But, not one person asked about me, what was going to happen when I was discharged, and not one mentioned respite care–the thing I needed the most.
I needed a break. I remember after the tenth admission, I decided to spend one night at home with my older son, thinking to myself, “I’m mentally checking out, I can’t do this anymore.” Obviously, since I had never stayed away from the hospital, I made sure that the staff would be able to get a hold of me for this brief 12-hour hiatus. Months later, after reviewing medical records, it was noted, “Mom is nowhere to be found during rounds,” which was heartbreaking. This entry should have read, “Chase is doing well, Mom told staff she would arrive mid-morning, she is home resting.”
Obtaining Respite Care or Nursing
Now that you have learned of my journey, I hope you agree that respite care is a valuable service to families in need. During one of our hospital stays, a nurse mentioned First Steps, our state’s program for Early Intervention services. Then I was put in contact with the First Steps Coordinator in my county. The idea originally was to get Chase in Occupational Therapy to help with his eating. Our lovely, grandma-like coordinator came by for a visit to start the process. I think she saw the despair in my tired face, and she took me by the hand. She asked who our nursing agency was; I had no clue what she was referring to. Stunned, she said, “You don’t have respite care?”
I thought respite care or nursing was only for end-of-life situations, and was unaware it could apply to my situation. I was then referred to our State Bureau of Special Health Care Needs. This step will depend on a combination of your home state, finances and insurance. If you have private insurance and are seeking respite care, I encourage you to start with the State offices; there are organizations that can offset co-pays for children with special needs. All states receive grants from the federal government to provide respite care, and most states have other Medicaid-based waiver programs that may provide respite or nursing care. Just know that there are options, and don’t stop until you find a way to access this kind of care. Visit ARCH National Respite Network to find resources in your area.
Luckily, I had applied for Social Security with Chase and he was approved and considered disabled. In our situation, having Social Security approval made the process of obtaining respite easier. I was connected with a Service Coordinator from our State’s Bureau. She came to our home, listened to his history, and could tell I needed any help I could get. I think of her often as my saving grace. I was immediately approved for as much care as I needed, up to 80 hours a week, based on his feeding schedule (use of G tube). This was a bittersweet number, as I wanted to have the relief, but also wanted to have privacy and be the primary caretaker in my home.
We started with 40 hours per week, but increased to 80 hours a week at one point (when doing overnight feeds). Currently, we are only doing about 15 hours per week. Hours are based on insurance and physician approval. This has not always been smooth. We had one doctor who didn’t see the need for care, and canceled our nursing care for two months! Shame on her! Our other biggest challenge has been finding a nurse because there is a nursing shortage.
Managing Respite or Nursing in the Home
Chase is eligible for an LPN (Licensed Practical Nurse), which we demand. Some children, based on diagnosis, will be approved for an aide, personal assistant, or patient care technician; others may only receive care from a Registered Nurse. We have had three long-term nurses and six short-term. The short-term nurses were fired by me. We have had nurses who have not showed up for a shift, had guests over, ate our food, fell asleep (while his alarm was sounding), stolen, forged time sheets, smoked and were caught leaving my baby unattended in the bath tub. So, needless to say, it hasn’t been all rainbows and butterflies! But we have also had exceptional nurses who bring joy and laughter to our home.
Now, that I consider myself a seasoned “nurse manager,” I hope that these tips will help if you decide to participate in home healthcare. First, I have a no tolerance policy. If I see any of the above-mentioned issues, a nurse will be immediately terminated. I do not allow excuses or second chances; my child’s health is top priority, period!
I search for the best agency in my area, not the closest, although I haven’t found any that have been great. I look for a seasoned company that is organized and carefully selects their nursing staff. I interview every nurse who comes in my home and personally train him or her for several days before the nurse is left alone. The agency only conducts preliminary selections, and if I am unhappy, then I keep looking.
I clearly give each nurse a range of hours, such as 15-20 hours per week. Then there is no confusion. I respect that this is their profession and if I cut back hours unexpectedly, this will impact their income and jeopardize our relationship. If I cancel a shift, I typically offer a replacement shift to keep the nurses happy. I also provide our holiday policy, since we do not staff nurses during holidays. We provide a schedule a month in advance, as I now work and attend school. Obviously, our nursing is only for relief, and some families may need more intensive round-the-clock care.
Our house is a tight ship! I run things in a very orderly manner and everything has its place. This works well for us, and for nursing staff that spend long days in our home. Even though someone is caring for your child, this is still a professional job; I keep personal conversations at a minimum and focus on the daily care of Chase. Each family’s needs are different; this is what is expected in our home.
We expect our nurse to strictly follow HIPAA privacy regulations and follow our daily/hourly schedule (includes feeds, weights, playtime, hygiene, naps), changing of linens, engaging in therapeutic activity, and excessive hand washing. We do not allow our nurses to bathe Chase, since we have had issues in the past. To make things easily accessible for our nurse, we provide a drawer in our refrigerator for her lunch; cleaning supplies are left for spills or accidents, and instructions are given for use of the washing machine. We have a specific location for coats and shoes (we don’t wear shoes in our home). We provide a nurse cell phone, a large note with our address and contact numbers, and an emergency kit for weather related emergencies. We have a nurse cabinet, where her supplies, stethoscope, gloves, schedule, thermometer, notes and an extra shirt are kept for accidents. We also use a binder, for Chase’s medical information (physician contacts and test results), including vomiting and weight logs that we expect the nurse to fill in.
For me, the hardest thing to get used to was lack of privacy. This depends on your personality; I had a difficult time having a stranger in my home and not being able to hang out in my pajamas. Nursing care for Chase in the beginning was a time for me to sleep; now it is time for me to catch up on household chores and attend work or school. We refer to our nurse as Chase’s friend and we don’t focus on the medical care that she does.
Currently, our two biggest struggles have been the use of television and finding substitute nursing. I am fine with a nurse reading, knitting or watching television while he is napping. And I think one hour of Elmo is fine, but our nurses have used it as a babysitter and left it on most of the day. A battle I have yet to win!
When our nurse is unable to come in unexpectedly, our agency (as with most agencies) is very poor at finding a trained replacement. At this point, I don’t schedule important engagements on nursing days in case I have to cancel.
I have laid out the good and bad when taking the step to include home nursing in your child’s care. I encourage you to play an active role, leave written daily updates and touch base verbally at the beginning and end of shifts. It never hurts to stop in unexpectedly and make sure the care meets your expectations. Remember, it is your home, your child and you set the ground rules.
The Break is Worth It
Each family may look different; you could be working parents, single parents, seasoned parents or first time parents. Your home could include a preterm infant or a teen with a traumatic brain injury. Our families are strong, but many have been strong too long. Respite, a break, may change your entire day and give you strength for the next.
It is my hope that insurance companies and physicians understand the impact that a child with special needs brings into a family. It is my dream that they consider the entire family unit when determining approval of respite care. I am not ashamed to say that nursing care saved me, my sanity and allowed me to clearly absorb the complicated health issues that my child had. My motto: “Care for the Caregiver!”