Sometimes you can’t get help for caregiving, because no one is willing to step in. Even professional caregivers.
We are 68 years old and caregivers for our 40 year old Autistic daughter. She is high functioning and also obstinate and difficult to live with and work with. As we are aging, we are physically and emotionally exhausted and are unsure how our daughter will be cared for when we can’t do it.
She is a “behaviorally abusive” to us, making it very difficult to enjoy her. She can turn a good time for her (or should be) into a nightmare of hitting, swearing, pounding on herself and throwing objects. She is on medications to help, causing her to gain 60 lbs, making her tired all the time and not helping with her with her temper and outbursts.
Many things can trigger her outbursts, including not getting her drink filled to the top without ice. She will go into a rant and show her fists to restaurant servers saying they should be fired. She worries that someone will sit in “her seat” or “touch her stuff” as she works herself into an out-of control state. No words or actions seem to defuse the situation.
As caregivers we are constantly living in a state of foreseeing and correcting her environment to avoid a major outburst. We are emotionally empty and feel helpless. Other caretakers we have had help us will say, “how to you do it? You must have the patience of Job!”
Early on babysitters said our daughter can only be cared for in “thirds”. Anyone having to be with her more than that can’t handle her. Guess what? As parents we are in charge of her 24/7.
Feeling hopeless we are both very depressed. Others around us don’t see this as we don’t talk about it as we would quickly lose our friends.
We have had several psychiatrists and psychologists work with us and with our daughter, but none have been able to provide us with “long term” results. Let’s just say that many traditional methods do NOT work.