Dear Reader,
My mom recently indulged in some much-needed respite time! It was not nearly long enough, but she was able to hand over the care of my sister to someone she trusts (a group homeowner we have used over the years, and my sister likes) so my mom could reconnect with her own interests. It was good for my sister and me too!
Although, the time was not nearly long enough to do all she had hoped, I hope this recent respite establishes a rhythm she will create for herself more often. Knowing my mom the way I do, I think she needs more frequent times away from her caregiving duties. But ultimately, primary caregivers must make those decisions for themselves.
I’m only the person who watches and assists with my sister when needed. Most of my assistance is emotional, practical, and logistical, we are blessed to have a part-time paid caretaker a few days a week who helps with transfers and the more physical responsibilities.
Because I’ve been a person needing caregiving after my own health crisis, I feel like I understand my sister to some extent. I know how it feels to be trapped in your mind and body. Unlike my sister, I also know how it feels to be a burden to my mother and others. I hated that feeling because it made me want to give up and pass on. My sister, praise God, does not seem to have any of those My sister, thankfully, doesn’t seem to have any depressive thoughts. thoughts. She is most happy to be cared for and increasingly asks for help with tasks like removing the gum from her mouth after she’s finished chewing the sweet out. Lol!
But on a serious note, I’ve seen firsthand how easy it is for caregivers to disappear into their responsibilities and to resent it. And then feel guilty about their resentment.
My mother loves my sister fiercely. But love doesn’t erase exhaustion, pain and boredom. Love doesn’t replace friendships and vacations. It doesn’t eliminate the need for connection and intellectual stimulation. Sadly, it just doesn’t.
That’s why respite matters. It’s #4 on my list of seven ways to best reconnect.
And respite is more than a desire to get away. Because caregivers need opportunities to also reconnect—with friends, family, community, and even themselves. Without being squirrely.
I pick at my mom because it’s hard for her to focus on one thing when her caregiver-mom antennas have a heightened frequency for all things my sister—a creek, a smell, a cry. If my sister is nearby, my mom might as well be right there with beside her. I find myself taking on the same characteristics. I’m always listening and hoping not to miss anything that could be consequential to my sister’s health.
It takes time to empty yourself of that constant anxiety and demand to be present for the person you care for. A few hours. A weekend. A moment to breathe. It’s different for everyone.
However long it takes, it is necessary to remind caregivers that they/we are more than our caregiving duties. We are more than list makers, Ubers, cooks, nurses, pharmacists, personal assistants, etcetera, etcetera.
That’s one reason I’m passionate about helping caregivers find support and community. No one should have to walk this journey alone.
We need the encouragement of friends who get us and will say to us: please take a break and here is how you can make that happen. Friends with referrals. Friends who are also resources.
In Florida we have places like APD and Elder Care who offer respite services, as well as private pay centers like TLC. These are especially good options for caregivers who want to keep their loved ones at home.
Here’s a photographic sample of my family’s respite story.
Now that I’ve shared, please tell me what’s one thing that helps you (or helped you) stay connected to yourself while caregiving? Have you ever used respite services? What was your experience?
Your truly,
Leah
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