I'm a Caregiver and a Wife and a Mother - Here's What I Want

I wish I could say that the new year has started off with a bang - that we're all feeling good and heading into this new decade with smiles on our faces.

But writing that would be a lie.

This month has been hard. This last week has been incredibly trying. Maybe it has something to do with the heaviness felt, especially here in the US, since the tragic helicopter crash. When things like that happen, life for everyone else is supposed to take on a new perspective. Make us feel grateful for the things we have.

And I am. My god, I am truly and deeply grateful for my husband and my daughter.

But even with tragedy looming large, that doesn't mean my family's difficulties are any less. I wish I could sweep our stresses under the rug. I wish I could take off my husband's spinal cord injury like an old worn out suit, put it in the trash, and watch it be whisked away every Monday morning.

But stresses like that, caregiver stresses in particular for me - cannot be discarded so easily.

I've been so angry lately - my emotions so close to the surface. Quick to cry, quick to let out a defeated sigh - with even the smallest provocation.

Jeff spent a week in the hospital in mid-January, and even though he's home now, he still isn't feeling great. He came home with a wound on his rear end from his hospital stay, and it took us the last two weeks to get it to the point where it's almost healed. That's a lot of extra patience for him (he's only got out of bed twice in the last fourteen days) and a lot of extra diligence for me (daily wound care, propping of legs, checking for pressure relief, etc.).

In addition, I've finally admitted that I'm drowning in the administrative side of Jeff's care. And things like self-care, quality time with our daughter, and sleep have all gotten lost in the goulash of life.

Last night I had a breakdown. As a caregiver, as a wife, as a mother. I cried in front of Jeff and Evie. I told them bluntly that I need more from them.

I absolutely hate turning the spotlight on myself. I am acutely aware that I am not the only person in this family suffering. We are all trudging down our life's path, each saddled with more than we can handle.

But one of my jobs is to keep us all on track. And one of the ways I do that is by asking my husband and my daughter every single day, multiple times a day, "What do you need?"

Last night I stood in front of the two people I love the most and told them I feel like a broken record. I am constantly asking them "What do you want? What do you need?" And If I'm not actively asking the question, I'm anticipating what their answers might be, and I'm acting on it.

Then I told them something else. My voice was shaking and my tears were held back only because I was angry too: "No one ever asks me that question."

I sat there in silence for a moment, then said out loud, but really more to myself, "Honestly, I don't even know how I would answer it."

An hour later we all went to bed. But I spent several hours that night thinking about what my answer to that question might be. What do I need?

I immediately thought of the essay "I Want a Wife" by Judy Brady. I first read this essay in college. And my 19-year-old self naively thought upon reading the title that the author was making a statement about her sexual preference. She wasn't. She was making a statement about feminism, particularly listing all of the things a traditional housewife does to keep things running smoothly. The message goes much deeper, but this isn't the post to expand on that. The reason I thought of the essay is that the thing this woman wants isn't too far off from the things that I want.

So as a caregiver, who also happens to be a spouse and a parent, here are the top five things I want:

- I want to stop time so I can catch up on everything that is half done, that's come undone, that hasn't even been started yet. Time is the nemesis of a caregiver, the one who has to be the arms and legs of not only herself, but of another person as well, so being able to manipulate time would be at the top of my list.

- I want five hours of uninterrupted sleep. Just five. I don't want to be greedy and ask for eight. That would probably be too much anyway. I can't imagine what five straight hours of sleep would do for my physical and mental well being.

- I want a clone - an actual physical copy of myself that could do the things I don't have time for. She could schedule and attend my overdue mammogram appointment. Or earlier this month when I was in the hospital with Jeff, she could have kept the follow-up appointment I had to cancel with a cardiologist to check on the status of the fluid around my heart that was discovered on an ultrasound a few months back. She could deal with the stress of this kind of important self-care appointment, then she could come back home and tell me that everything is okay, all while I spend the afternoon tending to my husband and getting him out of bed.

- I want someone to keep me on track. Someone who knows every medication I take, when I take it, and who gives it to me at the right time. I want someone who asks me if my phone is charged before I leave the house. I want someone to remind me to wash my hair. I want someone to tell me when the toilet is going to break and when I'm going to need to schedule in extra time to fix it. I want someone to tell me I need a nap because I've been extra grumpy and could use a little lie down.

- I want someone who worries about me as much as I worry about my husband and my daughter. I want someone who can't sleep at night because they're not sure they're doing everything they can to make sure I am happy and safe. I want someone who puts me first and themselves last because they know they are strong enough to be the engine that pushes me forward.

As you can see, my list is rather preposterous because none of these things exist in my current life. It might be outlandish, but it's true. Because the things caregivers need often aren't tangible. Yes, I can always use help with things around the house, and errands, and dinners, etc. But what I really, truly need is listed in detail above.

Right now though, I would settle for things to go back to the way they used to be. I'm not even talking pre-injury. Jeff and I have fully accepted that his SCI is here to stay. What we'd really like is for things to just get back to him being paralyzed and stable.

This morning as I was getting ready to take Evie to the bus stop, she came up to me and quietly said, "Is there anything you need right now?" I looked into her eyes and smiled. She was listening, and she was trying. I told her, "The only thing I need right now is a hug."

And it helped.

Here's hoping that 2020 starts looking up.