We are not only primary caregivers for Tim but also his parents. This has been a path of growth for both of us over the three decades we've been together and it is not always easy to let go of being a parent and transitioning over to letting him be an adult.
I imagine it might be easier if your child is able-bodied and able to do things for themselves. They can get a job, move out, start a family...but that is not how it is for us.
It's a precarious balance. On the one hand, we have to provide care for Tim's needs. We have to protect him, and I mean that literally, as he can't really fend for himself without being watched over such as being out in traffic, getting stuck somewhere without help for feeding or bathrooming, even just getting his chair stuck in a rut...someone's pretty much always got to be with him to keep him out of trouble or from getting into it.
On the other hand, we need to let Tim grow up and be an adult. He's intelligent and able to make decisions for himself. We have avoided the 'conservator' or 'legal guardian' route because he is of age and has the mental capacity to think and reason his way around things.
Since Tim graduated from college and reached adulthood, I've been striving to treat him as an adult, to let him know he's an adult, and to know that I am no longer in the role of raising him to adulthood. Yet, we live together and out of necessity have a very close working relationship with each other.
As you can imagine, sometimes that leads to frustration and one of the other of us losing our patience with each other. Tim may lash out at something and, out of habit and frustration, I will slip back into parent mode and snap back.
It's not something I'm proud of and we have both been working on it for awhile now.
While I strive to clamp off my parental instincts, it's not always that easy but I do work hard to see him as an adult and treat him as one. I also remind others sometimes that, yes, Tim is an adult and you need to see him that way too.
Independence is another big hurdle for us. At this point, we know that Tim will never be fully independent. Even without us, someone will always have to be there to provide care for him. That being said, we still strive to get him to be independent as possible. Try to get him to go out by himself to see a movie or other excursion; let him be alone in the house for a bit while we go to the store...things like that.
Those periods of independence work out pretty good but we've still got to remember the five hour rule...Tim can only go so long before those needs that need caring for bubble back up to the surface.
Another thing I try to do is not hide anything or sugar coat things from him. We've talked about the inevitable mortality of my wife and I and what he'll need to do at that time. We've worked with him on achieving a financial literacy so that he will be able to manage his money once we're not around anymore. What he needs to do in an emergency. I've even trained him on how to get out of the house by himself if there's an emergency and we're not there to do it for him.
At the same time, we do try to provide a loving and caring environment for him. He knows that he's welcome to stay with us forever and we'll be his caregivers for as long as it's physically possible. He knows that we love him and that we see him as a valued family member, not a burden.
And, yes, sometimes we'll snap under the pressure but that we'll take a breather and talk it out until we reach a resolution. We'll admit our mistakes, and work on ways to try to remember...we're all adults here.
Darryl Musick
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Thanks for sharing your story.
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