Please Let Me Sleep! Chronic Sleep Deprivation in Parents of Kids Who are Medically Complex

empty bedSleep deprivation is no joke, and if you are the parent of a child who is medically complex, you are most likely severely sleep deprived. This sleep deprivation comes from a variety of sources, but the most obvious one is the hours you sit up actually providing care to your child instead of sleeping. For many parents, we do not even have the option to sleep. Instead, we are providing care all night long, while also taking care of our families and working.

The Tale of the 53-Hour Weekly Shift

My daughter was supposed to receive 140 hours per week of nursing, but because our state reimbursed nurses so poorly, we could not find nurses to fill all her shifts. I typically had to provide her medical care for 60 or more of those 140 hours a week, in addition to the hours when we weren’t supposed to have a nurse. I also had to take care of her two healthy siblings, continue working, and coordinate all of her care.

Unfortunately, nurses are impossible to find on weekends and nights, so I typically needed to care for my daughter for 53 hours straight each weekend. Yes, you read that right. A 53-hour shift.

I think it is important to note that in my state nurses are limited to working 16-hour shifts, and in most facilities, shifts are limited to 12 hours in a 24-hour period. As a parent, I have to do a shift that is more than FOUR TIMES longer than what most nurses are permitted to do.

I want to make it clear that we are not talking about a little bit of observation. I did IV infusions, managed her ventilator, suctioned her airway as often as every 15 minutes, drew blood, placed Foley catheters, gave 50 doses of medication a day, gave five nebulizer treatments a day, and gave her five respiratory vest and CoughAssist sessions a day. I also had to assess her vital signs almost continuously — heart rate, oxygen saturations, respiratory rate, temperature, and blood pressure. My daughter was considered too complicated to even be cared for in a regular children’s hospital setting. What I was doing was ICU care.

The first 24 hours of my 53-hour shifts usually were not too bad. All of us have pulled all-nighters at one time or another, and your adrenaline usually pushes you through. It’s not too hard to ensure all 50 doses of medications I prepared were dosed and administered correctly if I double-checked them. I could prepare her IV infusions without too much trouble. Mistakes still occurred — one weekend I found that I had put my kid’s socks in the garbage instead of the laundry — but I could still function reasonably well.

The second 24 hours was another story. By about 36 hours in, my hands usually started to tremble, which made doing IV care or suctioning very hard. Then memory lapses started to kick in. Despite the fact that I color coded all my daughter’s medications and had extensive tables and charts to make sure I don’t mess up, I still made mistakes out of sheer fatigue. Usually the errors were minor — medications or procedures a little late — but the danger was always there, especially when you had a child like mine who took large doses of Valium and methadone and couldn’t breathe without assistance.

One weekend, after being awake for about 40 hours and doing several hours of procedures until 3am, I finally collapsed on the air mattress I set up next to her bed.

I fell asleep out of sheer exhaustion and slept through seven ventilator alarms.

Luckily none were critical, and I always did wake up if the alarms persisted. But after more than 40 hours of providing intensive care level nursing, what can you expect? According to studies, after only 17 hours of sleep deprivation, your cognitive function is the same as if you were legally drunk.

By about 50 hours awake my temper was usually extremely short. I’d yell at my other kids while simultaneously crying, giving a treatment, and monitoring my daughter’s ever-changing vital signs.

By the time relief finally arrived 53 hours later, I could barely stand up. I was known to repeat myself multiple times trying to give the nurse an update on my daughter. I would drag myself up to bed to sleep for the seven hours I had left before we needed to be up at 6am the next morning. I’d fall asleep in seconds.

I dreaded the weekends, hoping that both my daughter and I would survive without any major mistakes. But the fact of the matter was that I had no choice. If I wanted my daughter to stay alive, I had to stay awake for 53 hours straight every weekend.

tired womanEffects of Sleep Deprivation

The short and long term affects of sleep deprivation can be profound. In the short term, you may experience irritability or other mood changes, stress, memory problems, difficulty performing physical tasks, and concentration problems. Some people even experience physical symptoms, such as pain or trembling. Your reaction time and concentration abilities worsen considerably, so that simple tasks like driving a car become dangerous.

In the long term, sleep deprivation may also contribute to a variety of health and other problems. My daughter passed away five years ago, and even though I am now getting more sleep, I clearly have persistent negative symptoms from more than a decade of severe sleep deprivation. I have persistent short-term memory loss, my cognitive abilities aren’t as sharp, and I’ve gained weight. Other people may become more prone to high blood pressure, heart disease, stroke, diabetes, and psychiatric conditions, among other problems.

The effects are severe and often permanent. And for many caregivers, sleep deprivation is simply unavoidable.

Minimizing Sleep Deprivation

It may be impossible to avoid, but there are some things you can do to minimize sleep deprivation. Here are a few:

Maximize Your Home Care Benefits

Make sure you are receiving as much help at home as you should be. If your child receives Medicaid, either based on your income or through a Medicaid Waiver, he or she is entitled to as much home nursing or in-home aide services as are medically necessary. Technically, the way the law reads, if your child needs 24 hours a day of nursing care, your state is required to provide it.

If you aren’t getting enough sleep, have your doctor write for more nursing care hours. If your state hasn’t approved enough, appeal their decision.

If your child isn’t getting Medicaid and your insurance doesn’t cover nursing (as most don’t), see if you can apply for any Medicaid program in your state. All states have at least some sort of program to provide Medicaid in extraordinary circumstances. You can find your state’s programs at kidswaivers.org.

Get Respite

Respite is a short-term break that someone else provides in order to let you rest. It is a critically important service, but it can be hard to find. If your child has a Medicaid waiver, respite may be an included service. Typically, you can get more nursing or aide services at home for respite, or your child can receive respite in a transitional, respite, palliative care, or nursing facility. In some circumstances, you may even need to hospitalize your child for respite if you can find no other option.

States often run independent respite programs as well, though these tend to be staffed by non-skilled providers, and may not be useful for children who are very medically complex. They are a great option for kids who have lower levels of complexity.

It may also be possible to swap care with another parent who has a similar child. Make sure you are fully trained on each other’s children before considering this option.

If you have a partner or spouse, try as much as possible to break up care between the two of you so that both of you are able to get some sleep. Caregiving often strains marriages, and dividing tasks may lead to marital squabbles. Partners often need a push to understand the reality of your sleep deprivation.

Get Help with Other Tasks

If you have no way of reducing your caregiving load, you still may be able to get help with other tasks, such as housework and childcare. While some Medicaid waivers provide this service for adults, it is rare for it to be provided for children. Nonetheless, you may be able to get help through community service programs, your religious community, or even hiring someone to help you out. Don’t be afraid to ask friends or your community for assistance.

Maximize Your Physical and Emotional Health

We’ve all been in the situation where we finally get to lay down, only to have so much on our minds that we can’t actually fall asleep. Try to develop healthy physical and emotional habits so that the sleep you get is actually of benefit to you. Find ways to relax and still your mind, in whatever way works. Some people meditate or pray; others take hot baths or read. Find what works for you and make time for it whenever you can.

When we are doing long shifts, we often don’t eat well, and we typically don’t have the time or energy to exercise either. Try to make an effort to have some healthy snacks available beforehand, such as precut fruits or vegetables, to try to cut down on sugar-binging. And while caffeine is a must for many of us in these situations, try to limit yourself to the minimum you can. Exercise can be harder to fit in, but you should at least try to stretch a bit each hour to keep you healthy and prevent strain on your body from caregiving.

Advocate for Better Home Care

In many states, families are approved for home care but aren’t actually getting it. Other states don’t have programs for kids who are medically complex or have waiting lists for programs. Sometimes the best option is to band together with families and advocates to try to improve the programs in your state and make sure they are complying with the law. For example, in my state of Illinois, we worked with legal advocates to file a lawsuit against the state because a huge percentage of nursing shifts were not being filled. This lawsuit is in the process of being settled, and has resulted in a $10 hourly reimbursement rate increase, among other changes. In other states, such as Tennessee, advocates are working to develop completely new waiver programs to provide home care.

Obviously, it is hard to find time to pursue advocacy when you already aren’t sleeping, but if you can put in a small amount of effort along with the efforts of many other parents, you may be able to make a change. Simply sharing stories like the tale of the 53-hour shift above can make a tremendous difference.

The Reality

I know the reality is that many of us feel that that there is little we can do to improve our chronic sleep deprivation, because there realistically is no other option when it comes to caring for our kids. And, to be honest, this is often true. But it is possible to make very small changes in your life to improve your situation, even if that change is as small as eating baby carrots overnight instead of binging on candy, or asking your friends for help cleaning up your house. It is worth it for your health and sanity.

Author: Susan Agrawal • Date: 10/27/2019
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