Before I talk about caregiver fatigue, I want to mention that my computer was hacked, my facebook page and e-mail were hi-jacked and I could not receive or send e-mails. The perpetrator pretending to be me was asking for money and who knows what else they did. I had to pay a company to straighten things out so that I could get back on track.
Part of our fatigue when we are a caregiver is that we have all the same problems as everyone else, along with our responsibilities to our loved one. Some of us parents of adults with autism are also caring for aging parents. That is why we have to be aware of the stress that we are under and to try to be a caregiver for ourself sometimes.
Fatigue is defined as extreme tiredness from prolonged physical or mental exertion. We become exhausted. We have feelings of anxiety and depression. We feel depleted. As parents of children with autism, we become part of the 65 million Americans who are caring for someone who is disabled or elderly. That is why it is important to be able to ask for help when we need it. We don’t like to ask for help. One of the hardest facts that I had to face was the realization that I would always need help because of my son’s condition.
I tried to go it alone and just five minutes short of me becoming autistic myself, I realized that if I were going to last long term, I would need help. I have been burned out, worn out, washed up, used up, fed up and deep fried. Many times I felt like I couldn’t make it anymore. I had been pushing myself and pushing myself and pushing myself and trying to push PJ (who does not take well to pushing) and realized that I could not go on like that.
That’s how I know that we need a support network. My first support network was my older children who were available (sometimes reluctantly) to help with PJ. If you don’t have a support network, then you really will go through caregiver fatigue. That is why we started the PJ Foundation (pjjraf.org). We can’t do something for everyone, but we can do something for someone. That’s why we say ,”a spoonful of comfort”. A spoonful is the very minimum that we can give and you don’t have to write a book or start a foundation to offer a spoonful of comfort.
I hope there is someone in your life who can give you a little comfort. Whether it is a respite break by sitting with your child for a few hours, cooking (or buying) a meal for your family or helping with shopping and chores. If you are not the caregiver, but know someone struggling with a loved one who needs constant attention, please consider offering them a little respite. A little respite can go a long way.
As parents of children with autism, we are under the extra pressure of trying not to miss the “window of opportunity” during which our child can be taught enough to recover from autism. We need a team of professionals to help with this project and most parents can’t afford this. So then, we have the feelings of guilt that we are not doing all that we can to help our child.
I had to rely on all my Re words. Try to remember the Re words. Relax– restore– repair- refresh–recharge– so that we can recover–readjust–renew– regroup –recreate. If you are under extraordinary stress, you don’t have the energy you need to reach inside yourself and your body can get overwhelmed and this may affect your health. You may need help with this as I did by taking stress management classes and arranging respite breaks.
I will leave you with another of my favorite scriptures: Matthew 11:28, “Come unto Me, all ye that labor and are heavy laden, and I will give you rest”.
Until next time: May you have Respite, Recharging and Renewing time in your life.