'No One Can Care for him Like I Can'
+ Let's Zoom about Puberty.
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Hi there, and happy summer!
I believe that are things that happen in our lives that change us forever.
A missed call. A detour on the way home. A story that seems to be told to us at the exact time we needed to hear it.
This happened to me the other day.
I was at an autism parenting support group meeting. The speaker was from an advocacy group.
She explained to us that there is help out there. Yes, it may be hard to find. And yes, it may feel impossible to get. But it’s out there.
There are good people that want to help.
My internal alarms rang out. “No there isn’t”, I wanted to scream.
“Where are they then?!”
She told us stories of the advocacy she has provided over the years.
From helping a man in jail who was signing forms that he wasn’t able to read to a hospital that could no longer provide the correct care for a disabled individual and wanted to ‘dump’ him in an unsafe space.
And then her most powerful story.
The one that hit me the hardest.
The story of a mother with a profoundly disabled son. His diagnosis was Cerebral Palsey. He needed 24-hour care. He needed to be lifted and fed and bathed. He needed someone to stay awake at night to make sure he was breathing.
She described this mother as the most devoted mother she had ever met. But to a fault.
The mother refused to take help. She refused to allow anyone else to care for him. No nurses were good enough. She had to provide the care.
For a split second I saw myself.
While I would give a limb at this point for help…on some level, I do feel like I am the only person who can care for my son.
What if someone hurts him? What if someone is mean to him? Or abuses him?
He’s happiest and safest with me. This I know. But I also know I can’t do it forever. It’s not possible.
As the son aged, so did his mother. So do we all.
One day the advocacy worker received a phone call. It was from the mother. She admitted she couldn’t do it anymore. She couldn’t go on. And she had turned to drinking alcohol to cope.
When the advocacy worker arrived at their home, she saw a woman who had aged considerably. She hadn’t slept. She wasn’t taking care of herself. She was intoxicated. And the young man’s care had went downhill. He was no longer safe.
As a mandated reporter, she called the police. But not before she explained to the mother that she was going to get them BOTH help.
Her response…’I just love him so much. No one else could love him and care for him like I can.’
Caregiving had broken her. No one wants to hear that. But it’s true.
Caregivers are expected to be saints. We are expected to live this super hard life without complaint. But that’s not fair. And it won’t work.
There are elements of caregiving that are so hard and if we don’t support caregivers AND give them the tools and resources they need…both caregiver and patient WILL suffer.
Take the help. Find the help. Ask for the help.
I know there are barriers. Trust me. I know. I get it.
Finding good help is impossible
Maybe you live in a rural area.
Maybe you make too much money for help.
Maybe your child ‘isn’t disabled’ enough or maybe they are ‘too disabled.’
I get all of it.
But we have to keep looking. We have to keep searching. We can’t do this alone.
I needed to hear that story. It needed to scare me a bit. Because Cooper deserves it. He deserves a mother who is happy and healthy.
-Kate
In my new book, Carrie, Adrian, and I really dive into caregiving versus motherhood and how we support those caring for others.
This week’s zoom topic will be puberty. I will send zoom information to paid subscribers shortly. Stay tuned.
My son is 32. I hate to talk about this, but I “broke” during his early teen years. He was violent, dangerous, and I had two daughters. My country had called, and my husband had gone, and no matter how much help I had, it was not enough. I tried really hard—with help from an excellent school psychologist, I found a “boarding school” (because we’re so rural) and we tried that for 3 years—from 13 to 16. I brought him home (9 hour round trip) as many weekends as I could, and still I developed stress-related health problems. That school, with an excellent reputation, unfortunately was not as “smart” as my son, and they gave up on him in just a few weeks—but I had zero options at that point. Still, I nearly killed myself trying—even to educating a few “aides” (college kids) who honestly and blindly questioned whether it was “good for the students” to have family visits, or weren’t they better off just not seeing their families? (Take a deep breath. I didn’t physically harm any of them. Nor would you.)
At age 16, that same school psych had developed a program (not ideal, but….!) and worked hard with me to find placement. Of 3 “local” agencies, only one bothered to talk to us—and were a Godsend. The story is long, but the short version is, they let me help choose a house for him, his housemate (only 1 other), and have involved me in every way. He lives 2 miles from my house, and his house manager, who has now been with him 16 years, is a close friend. His staff would walk across broken glass for him—even when he had a period of extreme aggression for no reason we ever discovered, and some of them were injured seriously. They (although paid well for the job—it’s tight, and not enough, we all know that) often buy him gifts, or make them, with their own money and time. They extend that love to our family, and welcome us at any time, day or night.
My son’s home is the place I went a couple of years ago when I had a mini breakdown (caring for elderly parents at end of life). Although I was not thinking—at all—and walking through the rain in my socks, in the cold…I wound up there and they took me in and made sure I was OK. Helped me call my husband to pick me up, after a while.
Not only can they care for him (almost) as much as I do—but they care for US.
Sorry for the long post. Caregivers need to know. There is HOPE. There is JOY. There is PEACE. and there ARE friends who will care.
He’s better off now than he was when I was killing myself trying to do it all (that hurts to say.) And as the house manager says, “Never feel guilty. I had to hire 11 people to do what you were doing, alone.”
We take him out for supper and a couple hours in the park, weekly, and share a lot of the things he likes to do (very limited) with him. He’s delighted to see us every time. And he’s always happy to go home to “his” house.
May you all find peace, hope, and joy.
I needed this, Kate. Thank you. Healing up from a back injury that happened, at least in part, from trying to do too much on my own.