Caregiver Exasperation

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Every day, every single day, I monitor Andy’s hydration. He doesn’t ever drink anything anymore unless it is handed to him and he’s asked to drink it.

Before I started being the water police, he woke up one morning feeling confused, disoriented and dizzy. He wasn’t able to successfully add 2 plus 3 in his head. His neurologist thought he likely had an infection of some kind and we went to the emergency room at our local hospital.

After every test came back negative and we had been there for many hours, I noticed Andy looked better. His color in his face was normal instead of pale and his eyes looked focused and sharp.”How are you feeling?” I asked him. He put two thumbs up and sat up looking perkier after having received fluids from an IV and laying in bed with warm blankets continually being placed on him. Personally, I felt groggy and had a stiff back from five hours in a hospital folding chair.

The doctor came in and said, “We don’t know what happened but he has no infection or electrolyte imbalance. There was no stroke and everything looks good.”

“I wonder if he may have been dehydrated?” I asked. “He’s acting back to normal after all the IV fluids.”

While the doctor checked him I asked Andy, “What’s two plus three?” He frowned at me with a bit of disdain at the simple question, but answered, “Five.” Before he was discharged, the doctor said to me, “I shudder to think about how many nursing home patients don’t have dementia but are only chronically dehydrated.”

From then on, I’ve filled a large (24 oz.) drinking cup with flavored water, three or four times a day and made sure he drank it all. Andy doesn’t like to drink water, which is understandable because he always coughs and chokes when drinking or eating because of the Parkinson’s symptom of silent aspiration

How do I feel about adding water intake to my list of responsibilities as his caregiver?

He is already dependent on me for eating, bathing, working out, all appointments, travel, driving, entertainment, communication, relationships and health. Water intake is just another item on a very long list.

I’ve accepted this role because he is also the love of my life, the father of our kids and one of the best people I’ve ever known, who I believe would do the same for me if our roles were reversed.

Every morning I fill his cup and give him paper to cough into. As the day unfolds, I do that two or three more times. It sounds simple enough but the plan breaks down when he doesn’t cooperate and I discover the full water cup a couple hours later. It is then that exasperation can happen.

Exasperation: Intense irritation triggered by persistent difficulties and feeling fed up with ongoing challenges.

I stop being nice. “Drink your damn water.” I might shout. And I’d probably shout other harsh things.

And as I’m shouting I’m also hating myself for it. I feel ashamed for being mean to someone who needs help to drink water and in that moment I’m also shouting out my hatred of this disease and what it causes Andy to live with.

I am also shouting to the world,

Does anybody see me?

Does anybody care?

Does anybody know or understand how hard this is and that the only total relief comes when the worst happens and Andy dies?

Where can a caregiver go when she loses it and hates herself for that.

Well, I’ve discovered there is one place that is safe to go and that is into God’s grace.

It’s the same place I went to if I got too angry with my children and where I sent them when they got too angry with me. There is a detailed map back to balance and these are the steps.

It starts not with hating yourself but instead accepting responsibility for doing something hateful, and apologizing. Next comes asking the person you harmed to forgive you and lastly giving yourself God’s grace for being human, fallible, and doing the best you can in one of the hardest jobs there is: being a caregiver to a family member.

This process doesn’t always happen fast Sometimes I need to stew in righteous indignation or even hateful shame, but I know eventually I will get to the rest of the story.

Perspective is freedom.

When I finally kick myself out of that ugly moment and can once again see my entire beautiful life, then the process is easy.

Apologize.

Forgive.

Grace.

It works every time.