I am awakened from a deep sleep by the familiar sounds of intense vocal stimming, the click of the hallway light being flicked on and off repeatedly and the harsh strumming on the wooden window blinds. “Shit it is only 4 am,” I say to myself. “So much for extra sleep on the weekend.” I so want to throw the pillow over my head, turn on my side and ignore it all.
I head upstairs with brain fog and sleepy eyes to start the same routine I have been doing daily for nearly twenty years. Thankfully I am greeted by a smile; today is going to be a good day. Other mornings it is evident from the minute of waking that things are not right in his world and no matter what we do, nothing will appease him. No amount of snacks, videos or car rides will make him happy and we will have no idea why or what is causing the unhappiness.
The routine is the same, I could do it in my sleep (which is good because some days I am barely awake). First step is the Bathroom, and if we are lucky back to his bed for another hour or so of snuggling. Once he is up he is ready for breakfast number one. Breakfast one typically consists of pancakes or scrambled eggs, his juice and morning medications. If he is up too early, the meds have to wait. Once breakfast is done he is ready for car ride one. Mike and Zach go every Saturday and Sunday morning to get a bagel or breakfast sandwich and coffee then return home for breakfast number two. By now it is eight or nine am and the remainder of the morning is spent watching videos, and roaming the kitchen. Zach has a pattern in the kitchen: Open the fridge and freezer, open the cup cupboard and take out a cup, walk over and try the pantry, then he checks to see if he can get out the slider door into the backyard. This pattern or being upstairs then roaming the kitchen is repeated over and over and over.
Soon it is lunch time and time for car-ride number two. Then the afternoon is spent on the upstairs/kitchen pattern, car ride three, dinner, car ride four, more upstairs/kitchen roaming all interspersed with trying to get into the bathroom to turn on the water or grab someone’s toothbrush, rattling the blinds or jumping at himself in the mirror or with grabbing shoes and keys for yet another car ride with no particular destination in mind.
Finally it is shower, snack and bedtime and if all goes well getting him to sleep takes no longer than thirty minutes. The time is now 9:30 (hopefully). Tomorrow will be a repeat performance, as will the next day and the next and the next. My life is Groundhog Day.
While reading about Caregiver Stress and Burnout I came across the following from an article on the webpage: http://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm
“The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout. When you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why making time to rest, relax, and recharge isn’t a luxury—it’s a necessity.”
Oh I know the above statement is true, and I am lucky to have a partner to help with the daily duties. When Mike is on a business trip I definitely notice the difference! Thankfully, I have a wonderful caregiver that has given us many opportunities for a night out or a break. Before we had Beth, we were at the breaking point. The sleep deprivation and Zach’s self- injurious behavior and mood swings had made any semblance of a “normal life” seem so far out of reach. Every day I think of my friends that are single parents with awe and admiration. This is tough with a partner let alone doing it on your own. But to say making time to rest, relax and recharge is most times easier said than done, many, many times parents are not afforded that “necessity”
I am the first to admit I worry far more about everyone else in my family…including the dog. Are they eating right? Feeling OK? Getting enough exercise? Are they happy? But when it comes to me I do not do all I should to make sure that I am healthy and happy. I am way overdue for the gynecologist, dermatologist, endocrinologist, a physical, a mammogram, and God help me now that I am 50 a baseline colonoscopy. Want to know my reasoning for avoiding those appointments? I need to lose weight first….
I do not blame Zach or Ring 22 syndrome or autism for my lack of healthy habits, overeating as a way to deal with stress or anxiety has been my mode of operation for many years. Being raised in a dysfunctional family and some other life events that happened during that time fostered the bad habits that I still have in adulthood.
Now obviously the stress of being a parent/caregiver of a child with special needs has not helped my anxiety or stress level. Everything you read talks about the importance of sleep and healthy eating and exercise in both physical and mental health. Some days I am just too exhausted and drained to even consider hitting the treadmill or doing an exercise video. When a day starts at 4 am and ends at 9:30 pm, I just want to sit down with a pint of Ben and Jerry’s and watch mindless television.
Here are the signs of caregiver stress and burnout listed in the article:
|· Anxiety, depression, irritability
· Feeling tired and run down
· Difficulty sleeping
· Overreacting to minor nuisances
· New or worsening health problems
|· Trouble concentrating
· Feeling increasingly resentful
· Drinking, smoking, or eating more
· Neglecting responsibilities
· Cutting back on leisure activities
- You have much less energy than you once had
- It seems like you catch every cold or flu that’s going around
- You’re constantly exhausted, even after sleeping or taking a break
- You neglect your own needs, either because you’re too busy or you don’t care anymore
- Your life revolves around caregiving, but it gives you little satisfaction
- You have trouble relaxing, even when help is available
- You’re increasingly impatient and irritable with the person you’re caring for
- You feel helpless and hopeless
One thing that helps me from feeling helpless and hopeless and that helps me from feeling increasingly impatient and irritable is talking to friends. My friends both in real life and online help bring me up when I am feeling down. It also helps to know that I can help someone else too through a joke or message of support.
Laughter truly is the best medicine!
I may not be able to avoid caregiver stress but I do my best to avoid caregiver burnout by spending time with friends and by writing my blog. Monkey Business has been the best therapy I never had to pay for! I am working on taking better care of my physical and mental health, it is one of my goals for 2015. I am learning to take things one day at a time and not to beat myself up if I have an off day. Caregiver stress and burnout is a very real battle, it doesn’t matter what “functioning level” your child is, when your whole life is about taking care of someone else and there is no end in sight for that care you need to take care of yourself too! So I guess I better get scheduling…looks like it’s going to be a busy year catching up!