When the People You Care for Don’t Seem to Care
Jerry & Grandpa
https://www.aarp.org/.../caregiving-dementia-anger-stress...
I came across this great article on caregiving for angry and frustrated individuals the other day and it stirred my heart. The person in this article was caring for her dad who had dementia, and even though our circumstances are very different, I could still relate as a caregiver for someone with autism and mental illness.
During Jeremiah's younger years, when communication was difficult for him and he could not be reasoned with for a lack of developmental abilities to reason, we endured lots of anger and frustration...sometimes downright ugly to be quite honest. And it didn't have to be because we placed a demand on him or denied him something he wanted. It could be because the sun was too bright, the road we were driving on too bumpy, or that the color of his shirt was blue - completely irrational.
Things only got worse when he was 16 and schizophrenia entered the picture. I cannot count the number of times I heard him tell me he hated me or wanted to kill me...and how he would do it. I always carried a bruise or other mark as a reminder from the latest act of aggression and, if dodging things thrown at you were an Olympic event, well...I would have had the gold. As I type this, I can still feel the heaviness from those days weigh me down and make me anxious and I have to remind myself that they are in the past.
Before I go any further, please know that I DO NOT say any of this in order to disrespect Jeremiah or make anyone feel sorry for me. I don't feel sorry for myself and know that every single thing we have been through with him has been used to grow us as individuals and as a family (all five of us who lived with and took part in raising Jerry), as well as for the glory of God.
And I never want anyone to think any less of Jerry for much of what was out of his control due to his autism and mental illness. I try to be careful about what I post about him because, even though he cannot read it, he is a human, made in the image of God, and I never want to disrespect or say anything to strip him of that identity or his dignity. That would just be wrong.
So why the picture and article? This picture is of my father-in-law and Jerry and was taken several years ago. Jerry LOVES his grandpa. He asks to go along with John whenever he can to see grandpa and always asks if grandpa can come over, though grandpa never wants to. He asks if he can come to his baseball games or to his plays and, since grandpa has been in the hospital this past week, Jerry has asked John every single day when he gets home how grandpa is. Did he wake up? Did he eat?
You can see in this picture how alike their mannerisms are. I have sat across a table from these two and seen them exhibit the same facial tics and rub the tips of their fingers together in the same way while they eat. They both have the same speech impediment. For all intensive purposes, Jerry is grandpa's "mini me". There are so many similarities between Jerry and his grandpa that, at times, they have been on the same medications. Jerry has autism and schizophrenia. We believe that, had autism been a diagnosis when dad was a child, he too would have been given that diagnosis. At the very least, he struggled greatly with learning disabilities that resulted in him being bullied in school as a child. As an adult, he suffered a mental breakdown and has struggled with mental illness ever since. Recently, he has shown signs of dementia too.
The similarities end there though. You see, Jerry had a diagnosis. Jerry had early intervention. He had social workers, case workers, psychiatrists, developmental pediatricians, IQ testing, developmental testing, genetic testing, speech therapy, occupational therapy, therapeutic listening, metronome therapy, an astronaut board and sensory sock (among other things) for his sensory sensitivities, modern advancements in autism diagnoses and treatments, and a myriad of medication interventions...not to mention private and charter schools that cater to kids on the spectrum. Dad...he had none of that.
I know what it's like to be a parent with no knowledge of why your child is different from his brothers and sister and to wonder what is wrong, praying in the middle of the night that nothing really is. I know through the eyes of my children what it is like to be a sibling to someone with autism and mental illness. I know through watching my husband what it is like to be the child of someone like this.
And lastly, I know what it's like to be the wife of someone with mental illness because I had the privilege of watching my precious mother-in-law do it for 25 years. Mom worked, took care of her three kids, and took care of dad right up until the day she died. Though she could sometimes get overwhelmed and often got upset with him, she was never ever mean to him, never disrespected him and spoke ill of him to others, and never treated him as an obligation or burden instead of as a human. I believe she understood what I have had to learn over the course of Jerry's life - that dad could not control or help much of his behavior or emotions due to his mental illness. She cared for him with love and respect and never wanted any recognition or kudos for it. And there was not a bitter bone in her beautiful body towards him or over the "cards she'd been dealt". She had joy and she loved her family and her life and her sweet crooked little smile was evidence of that.
She was my inspiration. Reading this article made me think of her. May I do her proud in how I treat her grandson, and in how we all as a family care for and treat dad in his last years on this earth.
"Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me." Matthew 25:40