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The Weight of Care

Feeding and drinking became dangerous. A sign that Bob's body was failing him in a slow but consistent glide downward.

Let me back up. I honestly don't remember when it started to happen but over time, Bob couldn't stand upright. I used to describe my mom as a human question mark because of the way she stood, bent over. When I get Bob out of bed, he walks with his face down, parallel to the floor. I try to get him to stand straight, taking a cue from one of our previous physical therapists, who said, "Show me how tall you are."

He tries to straighten but his bones are stiff from inactivity. As suggested, we have hired physical therapists but his failing heart, caused by a thoracic aortic aneurysm, makes him breathy and weak. Activity, outside of our walks back-and-forth from the bed to the bathroom or stairlift, is about all he can handle.

Circling back in my mind, we took our last walk in April of 2020 at the peak of Covid. So, his posture issues must only have been for a few years.

But then, eating and drinking became difficult. This happened within the last two years or so. When Bob drinks, he drinks from a straw because he can't hold a cup. I make sure he is hydrated in this manner. But he kept choking. When he chokes, he sometimes aspirates and when he cannot clear his bronchial tubes, he gets pneumonia.

When we made a emergency visit to the ER for an unrelated problem, they gave Bob a mini-swallow test. He failed. He choked. They suggested I get a thickener. We now use what is called Thick-it in all his beverages. Even in wine and beer! Although, if you put it in beer, watch out! You get what can only be described as a kid's lab experiment. The beer bubbles up ferociously and reminds me of a volcano spewing out white lava.

Up until then, I had doubts that he had dementia. However, coupled with everything, I'd have to exist in the land of DeNial to think otherwise.

Which brings me to the mind and heart of the caregiver. The following is a list of my neuroses (you're welcome):

  1. I don't know about anyone else but I am constantly second-guessing what's best for Bob. Should I be doing this or that?

  2. I feel guilty about, well, everything, like having the urge to socialize with friends, but don't because Bob can't participate;

  3. And going to the store is my own special nightmare. I have a self-imposed 45 minute schedule for trips from and to home;

  4. Simply resting causes agita. Unless I take a nap, I constantly berate myself for taking time off.

  5. I feel guilty that I should be doing, well, more for him. I guess that's the same as item 1. See?

  6. I should be hanging out with him more in his bedroom--more than my usual six-to-eight hours I already spend with him in face-to-face contact.

  7. I feel guilty right now while I write.

And this list shows only a slice of the second-guessing I do throughout the day about what I should or should not be doing for and with Bob. I end up explaining myself to him.

"I just got finished with laundry." Or, "I just got some writing in." Or, "I just got home from work." On workdays, I get up at 2:30a so that I am at work and back home when Bob is still asleep. I impose this upon myself so please don't feel sorry for me. Anyway, I don't think these feelings of doubt and inadequacy are unusual.

I recently corresponded with a woman who was a caregiver for a loved one but who ultimately had to relinquish responsibilities by putting her loved one in a nursing home. Her story is heartbreaking and yet, at some level she felt responsible for the loved one's passing even though the loved one's care grew outside her abilities and out of her control. Her heart didn't outgrow the care but her strength, finances, and medical knowledge shrank under the weight of care and caregiving.

Trust me, I've heard horror stories too about people who took advantage of a family member who was failing cognitively and mentally. These stories curdle my blood. It's the sort of thing Stephen King might write about. I hope God has a special place in hell for people who take advantage of the aging and senile. But I digress.

The caregiver can be taxed beyond imagination. But they can also be inspired to the moon. The pendulum between taxed and inspiration can swing wildly and often. I find my solace in prayer. Others find theirs in therapy. That's good too.

If you're a caregiver reading this, whatever works for you, do it. You need your strength physically and emotionally to fully help your loved one. And if you're struggling and you find you cannot perform the duties you need to any longer, then it means your loved is struggling too and possibly it's time to relinquish your duties.

I pray that I never have to make that decision but if I get to the point when I can't help Bob by ensuring his dignity and treating him the way I would want to be treated, then I will let go of my promise to care for him at home so someone more equipped can help him properly.

I pray every day we will be together until the end and know this prayer might not get answered.

God bless you all.

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