My daughter had been in the hospital for weeks on end. I was sleeping bed side and working as I was able. Each day as the doctors rounded, they’d look at me, still dressed as a professional, and comment on “how together I was,” or “what great support I must have.” And don’t get me wrong, I was lucky to have the support of family I did, but chronic illness is hard. And it had worn me down. It had worn me down so much I couldn’t tell you the day of the week, if I had eaten, or if my socks matched. But because I wasn’t in pajamas and I could tell them what meds she was on, what therapies she had and what treatments she still needed in their eyes I was doing alright. And when it came time to take her home there were no offer to set up home care. I was a “Rockstar mom,” capable of operating machines, administering meds and running on caffeine.
And, I did. But it took all I had. Which meant laundry piling up, dishes going undone and floors being left unswept. And it’s not that I’m a slob – I hated myself for the condition of my house, I just couldn’t clean it. Physically I didn’t have it in me. Then my fridge broke. And I didn’t have the energy to do anything about it. It was under warranty, but I didn’t have the fight left. So, we did without. We did without until my in laws replaced it.
We were living with trauma. And it was taking a toll. But I still made her daily therapy appointments, weekly follow ups and monthly hospitalizations for treatment – so we were “doing alright.”
Then, nearly a year later a seizure took my daughter’s mobility. And she became physically reliant on me. And within weeks I tore both rotator cuffs. But the mama in me said “carry on.” And though the doctors worked with us to get equipment to help her – nobody offered information on respite care or equipment to help move her. I didn’t know these resources existed, and they assumed I didn’t need them. Then, while my daughter was in the hospital receiving her 27th overall transfusion I was overcome by chest pain. I asked someone else to sit with her while I went to urgent care. I explained the situation and asked that they see me fast, so I could get back to her. They obliged. The doctor who saw me asked what she was inpatient for. And in a nutshell, I explained the hell that the last two years had been. And in response she said, “but you seem to be doing well!” And I didn’t have it in me to respond. It turned out my chest pain was just strained chest muscles that resulted from me trying to avoid using my shoulders when lifting her. But again, because I wasn’t falling apart there were no resources.
For me the last straw came last week. I had driven two hours away for her third appointment in 4 days. I showed up there with the wrong set of notes, which I’d stayed up all night writing and without the pre-registration paperwork. They said they mailed it. And they probably did. But the truth is I’d long stopped opening mail from medical providers, as most were bills I can’t pay. And when the doctor came in and asked, “how are things?” He got an honest earful. They’re awful. For her, for me and for our family. THIS is not working. We need more help than what we’ve been receiving. And by the way, I’m scared she’ll outlive me. Because she has nobody else. THIS is not how it’s supposed to be.
He looked startled, but he took it in stride. Then he referred me to a case manager. Who could chase down referrals and records. And connected me with a billing specialist to fight the financial battles. And he pointed me towards the local Board of Developmental Disabilities for resources. And he said, “you’re overwhelmed.” Which was both an understatement and a relief to hear.
And I didn’t put my white flag of surrender down when I left the office. I waived it to friends. And to family. I said, “I need help. Help with my daughter and her brothers.” I hired a housekeeper. I subscribed to “shipt.” I stopped trying to do everything. And my world isn’t suddenly perfect… but it’s manageable.
And tomorrow – I’m getting a manicure. Not because I need it. But Because I want it. And because I want the 20 minutes of silence it will bring. My point here is “caregiver burnout” is as much of a thing as “mom face.” And sometimes we need to reach out for help – or to those who need help. Even if their world or ours hasn’t yet fallen apart.