Last night, I was angry because it was late and because I was tired. I vented on my personal Facebook page by sharing the following post:
"OUCH! This may hurt to read, and chances are it will disappear once I really think about it being posted, but for this moment, it stays. I have been searching for means of support for non-traditional caregiving roles in our area. There is simply not enough information available."
As a caregiver mom, some things are difficult to share. They are not for conversations that take place in the local grocery store aisle. They are not for the rare night out enjoyed with a friend. They are not things you discuss over the phone with your parents who are several hours away. These burdens often aren’t shared, and at least for me, when I do discuss them, I feel exposed. I really want to be understood.
So I share these things a little at a time. Sometimes with a cracking voice that whispers, "I am struggling.” And at other times the frustration pours out by yelling over the simplest thing gone wrong. Recently it was when Taylor decided to use the bathroom I was in the middle of cleaning. I lost my cool with him because he needed to pee. Not my best caregiver moment.
Caregiving is hard. I find myself wanting to scream when people ask, "Don't they have services for that?” or "Can't you get so and so to help you?"
Please understand that we are grateful for the things that are working. However, we are also exhausted from running on the treadmill of parenting an adult child with special needs with minimal outside support.
I feel furious. Actually, I am furious. The lack of support for adults with brain injury (in our area) is ridiculous. The second Taylor attempted to return to work he lost all services associated with his injury. Quite frankly they were poorly executed services at best. So while the loss stung, it didn’t leave a gaping wound where something wonderful had been. The hole was already there.
There should have been more. There should have been programs worth fighting for. But there never was. So I didn’t fight. How heartbreaking.
When you have someone who cannot be left alone, not even for a quick run to the store...someone with endless needs for emotional and physical support, someone who requires far more care than people either want to admit or realize; it is wearisome. Here’s the kicker...when a person suddenly becomes disabled as an adult; you have no network in place. There isn’t a built-in support system. You have only a vague idea of what it is you are supposed to be doing to make sure things run smoothly. This can feel defeating.
At times it feels like you are left with criticism, rejection, misunderstanding, isolation, and unwelcome judgments. When you look around, it appears as if others are doing the whole caregiving thing better. More times than not, they are struggling, too.
At the beginning of our journey, the following phrase was shared countless times with us, "This is not a sprint, it is a marathon." I even purchased a bracelet as a reminder of this truth. I wanted to keep running. Now I question the wording. No marathon lasts for this long! A new phrase is needed. Marathons don’t take place over thousands of days. At my last count, we were at 2,259.”
I deleted the post within twenty minutes. I wasn’t ready for my friends across the blue screen of Facebook to read my frustration. It was one-thirty in the morning. In the twenty minutes the post was up (in the middle of the night) I heard from four caregivers.
The first wrote, “Everywhere I turn it feels like rejection.” Another expressed, “No one knows how hard this is.” A dear caregiver in Canada thanked me for my courage in speaking out.
So I sorted things out in my head and heart first. I did some editing not only of my words but also my emotions.
For those who love a caregiver, I want to ask you to remember the lyrics, “What would you do if I sang out of tune, would you stand up and walk out on me?” As a caregiver mom, I am going to sing out of tune. It may come in the form of extreme irritability. I may cry at the drop of a hat. I may not respond the way I used to, or the way I want to. Or I might seem indifferent, hypersensitive, edgy—it depends on the day. I hope you won’t walk out on me. Because I do indeed “get by with a little help from my friends.”
For the other caregivers reading this…the ones who go to the emergency room at 10:30 p.m., just after putting on pajamas and getting settled in for the night, and then stay for the long haul. For the ones who live out moments no one else imagines, and the ones who observe the pain, the frustration, the giving up, the giving in, and then the fighting back…yes, you. I see you. And I honor you. I hope you take this moment to honor yourself. I hope you feel through these words of a simple blog aimed at telling the truth…that it is okay to be angry. It is okay to fall apart. It is okay to retreat. To drawn inward. To do what works for you and yours.
However, after you fall apart, I hope you will allow yourself the joy of coming back together. I hope you will somehow, some way share your truth, instead of letting it fester. I hope you will forgive yourself and others for the times you felt rejected and defeated. I hope you will reach out. I hope you will look ahead. And I hope you know beyond the shadow of any doubt, that you are amazing, right where you are.