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Larrytbm

Distinguished member
Joined
May 13, 2017
Messages
102
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
TX
City
Austin
While I haven't posted recently, I have followed many of the threads. All of the posts are so beneficial and at the same time overwhelming. Anyway after another 8 weeks, I'd like to give an update on our situation. The summer heat and my slow healing foot has kept me from overworking and things are piling up. But I decided to get some PT so my foot doesn't become a limitation in the future.

Our RV trip didn't work out. A 2 day trip to get the whole family together and Eileen couldn't handle the thin air (which was my big concern). Just 6 hrs and we had to get down to a lower altitude. We came back home and Eileen used the Trilogy most of the return trip.

Except for the trip, I have quiet time for myself every day. I'm an early riser, up at 5:30 am and with the Trilogy, Eileen sleeps til at least 7 am. I get a cup of coffee and sit on the front porch, my dog roams the property in the dark (with a lighted collar).

Eileen did get a PEG just before the failed trip. She is tolerating Fibersource HN very well. Otherwise she is eating very little (ice cream, shakes, mac and cheese) but is maintaining weight. Compared to so many CALS, my direct support for her is very minimal, just the feedings, driving her to Dr., etc. and other minor help. I know this will change, later rather than sooner I hope.

But there is the cleaning, laundry, dishes, grocery shopping and cooking. Even if the cooking is just for me, I'm probably the worst husband in this area, so lots to learn and adjust to. Then I still have my regular chores, mowing, cars, etc. I have replaced our pedestal bed with a lower bed frame for ease and safety. Still haven't installed the wall mount sink yet, but actually my next priority is adding a handicapped ramp in the garage and probably the front door.

I have spent a lot of time changing the steps and handrail on the RV to make it safer and easier for Eileen to use the RV as long as possible. Next month we will take it on a 3 week volunteer job just 90 miles away, this will be the best opportunity for socialization with friends from around the state that we have known and worked with for years. Our son also installed a passenger seat lift on my truck to solve the height problem.

Anyway, at this point I don't feel stressed ( except for the failed trip) or overworked, yet.
 
Sorry to hear about your failed trip. It definitely sounds like a hectic 5 weeks. You trip next month sounds awesome.
 
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