Well This is Gonna Be Weird

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Well This is Gonna Be Weird

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So, we've had a physical therapy evaluation that she did not want to go to and was agitated and grumpy about all the way there and while waiting. Yet the woman who can barely get out of a chair, who freezes up at the idea of stairs (using a door - a MOVING door) to hold on to going up or down the front steps AND who damned near over-balances getting out of the care (has over-balanced into the bushes) gets up and down, walks WITHOUT shuffling across the floor, raises both arms over her head (will NOT do that for me to put on her clothes or get clean), and basically is "all better" suddenly movement-wise. And the Oscar goes to...

We also had the barium swallow test this week and that's where the "weird" begins. The doc ordered the test because folks with her disease often have swallowing issues that lead to aspiration, which leads to pneumonia, which is usually how they die. Well she isn't aspirating yet BUT it's close enough to be concerned. Yup, she does put too much in her mouth at once and drinks too fast. So. Constant reminders to slow down, take sips not gulps AND (the kicker) use a thickening agent (i.e. cornstarch) to thicken her beverages to a honey level. Yeah. Right. Sure. Oh! And no more ice cream, jello, milkshakes or anything that starts thick but "melts" to thin liquid in the mouth (body heat) and yeah, you can't effectively thicken wine or beer. Seriously NOT going to be fun.

Monday through Friday, I leave for work before she gets up. So that's morning coffee and lunch time soda (at the very least) while I am at work. The caregiver is here two days a week over the lunch period. One other day she goes out to Optimists -- although the last two weeks she hasn't gone but really won't say why -- but how am I to get that drink "thickened"?

What am I going to do? She needs to drink or she'll get dehydrated. But she isn't supposed to drink non-thickened drinks. But I have to work. And we can't afford more caregiver hours. To have the caregiver in every day would be more per month than her social security (and that's only at 3 hours per day). Double whammy there because she is helping with the household budget to help offset the added expense of her living here - increased utilities (thank you extra laundry, more frequent dishwasher runs, and additional groceries, and WAY more paper towels purchased per month than I thought possible).

It's been a long-ass week. Started with dental surgery for me, which still hurts by the way, and I'm getting sick of soup. Tuesday was the physical therapy. Wednesday she refused to go to Optimists. Thursday (yesterday) the barium testing, Because of yesterday I had to work through lunch today - 9 hour day. Monday will also be a work through lunch day because we have an MRI that day. Oh! and the work through lunch today wasn't enough to cover the time away yesterday so that's another 45 minutes I have to make up. I'm exhausted. To lose my lunch break isn't helping.

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3 Comments

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Lark

Yes. What do you have in mind?

Lark

Oh my goodness! I don't even know what to say and that is saying something in and of itself. I am thinking of you, praying for you and have nothing to say because anything encouraging or upbeat just sounds ridiculous for your post. I honor your journey!