Thursday, August 27, 2009

The only constant is change

We have had 65 days of temperatures over 100 degrees Fahrenheit (38 degrees Celsius), and today will make 66. I'd forgotten how ferociously cabin fever strikes during these slow, hot Texas summer months. Just like in winter, we move quickly from the house to the van, from the van to the office/store/restaurant. And we move just as quickly on the return side.

Jordan went back to Illinois just over a week ago, after spending eight weeks as BR's live-in caregiver. It wasn't always smooth, but we did finally find a groove, and enjoyed her company. Jordan spent most days up in her room, which couldn't have been easy given that the A/C was not able to keep up with the heat and temperatures would reach 80-85 degrees each day. Great for beach. Not so good for bed.

We had a neurologist appointment on Monday. We really had only one expectation going in. Both BR and I were sure that he had gained some weight since his last sit on the scale four months ago. To our dismay, he's lost seven pounds. In four months.

131 pounds divided by 1.75 pounds lost per month leaves 75 months until 0.

Tonight was meatloaf night, with salad and heavy honey mustard dressing, black-eyed peas, and homemade peach ice cream for dessert.

The neurologist put BR on a more sustained schedule of steroids. Instead of three grams of prednisone every three months, he's taking one gram every four weeks. The difference in his energy levels, appetite, and comprehension is amazing. Please, no whammies!

6 comments:

Patrick @ Caregivingly Yours said...

I want to come to meatloaf night! Sounds delicious. Do you two deliver?? :)... Steroids always seemed to have that instant kind of affect on Patti. She was trying something called Prednisonne Pulse Therapy for a while.

Caregivingly Yours, Patrick
http://caregivinglyyours.blogspot.com/

steve said...

Meatloaf night really is the best, Patrick. My sister called that same afternoon asking for BR's meatloaf recipe so that she could have a meatloaf cook-off. We haven't heard back, so we can only guess that she is sulking after a humiliating defeat.

We are really pleased with the affect prednisone is having on BR's fatigue an appetite.

Cranky said...

I agree with Patrick - meatloaf sounds great. Unfortunately, our oven is on the fritz and we've been putting off repairing it while there's no need for it in the summer.

Hope all is going well on the aide front with Jordan back home. Have you found a replacement?

Herrad said...

Hi Steve,
Never been keen on meatloaf,but your menu has attracted my interest really liked the idea of meat loaf and salad with honey mustard dressing and black eye peas and home made peach ice cream sounds very good.
Glad to hear BR has an appetite again and is not feeling knackered all the time.
Curious how his pain levels are, hope the pain has reduced.
Big hugs to you both.
Have a good weekend.
Love,
Herrad

steve said...

Hi Cranky - we are taking a break from paid caregivers for a while. I'm feeling much more well adjusted to handling the morning and evening routines day in and day out, and BR is feeling up to spending the afternoons on his own.

But Superman, I am not. So we are now in the market for a twice weekly housekeeper. Someone to keep the laundry going, the kitchen sink clear, and the floors mopped. I'm hoping this is a skill set more common than that of an excellent caregiver.

Jordan has most graciously offered to come back and care for BR whenever I need to travel on business.

No working oven, huh? We had an old Wedgewood in SF that went out on Thanksgiving day. Not pretty. Summertime hasn't really slowed our cooking much, but it has reduced the efficacy of our ice cream maker. I really miss our old one that used ice and rock salt instead of a pre-frozen bowl.

Well I do declare, Herrad. One bite of BR's meatloaf, and you'll be a convert. The only thing better than BR's black eyed peas are his butter beans. Fantastic!

BR's pain levels are still a struggle. As predicted, the opioids are becoming less effective, and since he is pretty much maxed out on the patches, he is taking more of his break-through pain meds.

Cranky said...

Steve - I love the house after the cleaners leave. It smells great, it's in tip top condition.

The caregiver book I read recently suggested making out a table of all the help performed as a caregiver, including the housekeeping activities and tasks of daily living. From there, you can figure out which you'd most like to get help for and which you feel you can or must do yourself.

Sounds like you're doing that in a way. You can't do everything (amen on not being superman, I hear you on that), so what would be best to have someone else do?

On that score, I have a fantasy that we'll someday be able to get someone in once a week who can handle bedtime chores and the next morning as a respite for me. It would be expensive, so haven't pursued it yet, but I hope to within the next year.