end stage dementia food fight

My dad is basically a 5’8” 98lb skeleton.

Over the last two years he’s been losing weight faster and faster as he forgets how to swallow.

Unfortunately, that’s what happens in end stage dementia.

He can barely eat anything at all without getting liquid stuck in his throat. 

Then comes the non-stop gurgling, which is kind of like gargling, and the coughing.

But, What’s most maddening for me right now, is that my sister, mom, and I have totally different ideas on what my dad should eat. 

My Sister's Idea

My sister is insistent we get him some oxtail soup. 

Even though he can’t eat meat, unless it’s minced. And, he can’t eat soup, unless it’s thickened.

Side note: When you forget how to swallow, you have to thicken your liquids so you don’t breathe them in as easily. Thick liquids are easier to control in your mouth and swallow safely.

Anyway, you know how much a bowl of this soup costs at the local casual dining restaurant, Zippy’s?

It costs $27.50! And, If we’re lucky, he’d be able to swallow a couple spoonfuls. 

Why waste the money and time.

Especially since he already gets great meals where he lives, and they’re included in his hefty $12K/mo memory care price tag.

He just had minced shrimp and mashed potatoes for dinner tonight.

And, it’s not like oxtail soup was his favorite or anything.

My Mother's Opinion

My mom on the other hand is fixated on my dad eating ice cream.

My mom loves ice cream. She usually has 6-10 pints of various flavored ice cream in her freezer at any moment.

Anyway, we had a meeting today with my dad’s caretakers and they said, 

The doctor’s not worried about blood sugar spikes at this late date, so he can start eating whatever he wants. 

My mom immediately jumped on the idea, So he can have ice cream?

Well, we don’t have the non-melty ice cream, we only have the kind that melts to a liquid.

Can he have it? Asks my mom

If you sign a waiver saying you’re aware he can choke or get pneumonia from aspiration.

Yes, sure I’ll sign it. When can he have ice cream?

Anytime he wants 24/7.

Oh, that’s great.

Since then, which was just a couple hours ago, my mom has asked me to get my dad ice cream no less than 6 times.

I just ignore her.

My reasoning: I’m not getting him ice cream on my watch.

It’s bad for him, it’ll spike his sugars, and it’ll turn into liquid in his throat.

And, It’s not fun watching him struggle and gurgle the liquid stuck in his throat until he finally coughs it out.

My mom can get him ice cream when I’m not around. It’s not like I can control her or anything anyway.

Ok, so we’ve got the oxtail soup stance, and we’ve got camp ice cream, and then I’ve got my point of view.

My Plan

So, a month ago my dad’s doctor recommended we do comfort feeding.

That means we tell the aides to stop spoon feeding my dad, and we let him eat what he wants, if he wants. 

I mentioned this in episode 2, Stop Feeding Dad. 

As that title suggests, I was and still am onboard with this plan.

But he doesn’t know how to feed himself, my mom says.

Yes he does. He feeds himself every day, I reply.

Which is true.

I brought up the idea of comfort feeding again to my mom last night.

What? No way! was her answer.

That’s not comfort feeding. That’s purposefully starving someone.

We got into a 20 minute heated conversation in the pitch black after we were both tucked in our beds.

Finally there was just silence and darkness.

Of course, neither of us could convince the other that our point of view was the right point of view.

Probably because there is no right point of view.

Agree to Disagree

And, that’s how it stands.

We all have to agree to disagree.

When it comes to the care of loved ones, disagreements are going to come up.

Expect that.

Each person is entitled to their own point of view. 

I find it helps to step back and think, 

Why in the world is this hard-headed person acting this way?

It’s almost always out of concern or fear or love.

It’s almost always because of a tender heart, not just to be contrary.

Everyone is doing what they think is best.

That’s my reason too.

Even if my way might seem coldhearted from a different point of view.

Are you having any caregiving disagreements?

I know I’m surely not alone.

Take care, 

xoxo Lani