The Caregiver Cancelled…Again

Remember a few years back when CANCELLED was heard regularly on social media and on the news? For one reason or another, it was like everyone was getting cancelled. Actors, hosts, comedians, and politicians were cancelled. It was raining cancellations! No one was immune, but in the world of disability and disability care, cancellations have always been prevalent. I often joke that there would be more commas in my bank account if I got paid every time a caregiver or plans were canceled. Cancellations come with great regularity in the rare and disabled community.

As a Connection Circle Leader at We Are Brave Together, I engage in several groups for moms that are the primary caregiver for their families. Many of these moms are caring for loved ones that are medically fragile or have intellectual or physical disabilities that require 1:1 care. Like Emily, many must be supervised 24/7. They require 24-hour care and constant supervision. In the past week, I have read several disheartening posts from stressed-out, burned-out, and overwhelmed moms excited to get some respite only to have the plans altered or changed because the caregiver they hired to watch their loved one had to cancel. I decided to share some of these stories.

“This weekend is my 18th anniversary. My husband and I had plans to spend the weekend in wine country, and the caregiver just cancelled on us. My husband often has to work weekends, and he was able to get the time off.”

“I can’t remember the last time my husband and I went on a date. We planned dinner and a movie for tonight. I was really looking forward to getting out of the house and getting a break. I miss my husband. He is my best friend, and I miss spending time with him. While I was running around to make sure everything was in order, the caregiver cancelled. I feel so much disappointment.”

“Our family planned an Alaskan cruise with extended family. I finally found a caregiver I trusted to come and stay with my son while we were gone. I just got a call that the caregiver is sick and has to cancel on us. I am devastated and heartbroken.”

“I have tickets for a concert tonight if anyone is interested. Our caregiver canceled so we won’t be able to go. I am not asking for money. I can transfer via Ticketmaster if you have an account. Sure it will be a great show.”

“I planned to get a pedicure today, and the caregiver didn’t show up.”

I could relate to all of these posts, as could most of the moms in the groups. I have so much empathy and compassion for these parents who just desperately need a break. They need a few moments off the hamster wheel. They need time to feed the soul and to pour into themselves. It is also frustrating that consistent, reliable care is hard to find. It is sad that we expect our plans to be cancelled. If the plans don’t get cancelled, we are surprised, overjoyed, and elated.

There are also seasons where cancellations are less frequent. I relish those periods. Right now, we are in a steady and balanced season for caregivers. This hasn’t happened accidentally. I have made it my mission to expand our care circle this year, and my plan is working. There are compromises to be made, and control to release when delegating care to caregivers. Right now, I have a wonderful person coming to do baths and walk Emily a few times a week. She is a bit spacey and scatterbrained at times. If a mess can be made, she and Emily will figure out a way to make it. If there is fun and laughter to be had, they are on that too. Sometimes, the loudness and chaos that ensues when they are together can get under my skin, but then I remind myself that she is reliable, caring, and Emily is happy and her needs are being met.

For all the moms that have posted about caregivers canceling, please do not give up. Keep your home and heart open to additional support. Finding caregivers isn’t easy, and yes, it can be disappointing when they do not work out or cancel, but it is worth the effort. Our minds, our bodies, and our souls need respite. We cannot be on deck 24/7. We must be able to tap out sometimes and let others in. It is healthy for us and our loved ones to expand the circle and never give up on the search for reliable and consistent support.