I thought I would just share what a typical day looks like for Chris and myself. This doesn’t include all the little things that have to be done like housework and bill paying! This is a basic day for us if all goes smoothly.
Generally, I’m up by 6 or 6:30 depending on how well Chris slept through the night. Some nights he’ll sleep for a 4 or 5 hour slot. But most nights he wakes me up every 2 to 3 hours. And there are those nights he doesn’t sleep well at all and I’m up every hour or so trying to change him or get him comfortable.
At 6:30 I prepare his morning bolus (tube feeding) and meds. After I finish feeding him to about 7:30 is “my time.” This is where I pray, meditate and read the Word. I am learning how important this habit really is! I decided to develop it when Ronella was little. I wanted time in the Word before the day crashed in and I’ve been doing it ever since. I know see its value as the Word I put in my heart all those years can’t be shaken. I have found that even the hottest furnace can’t burn it away! It has been a mainstay and carried me during this time of testing. And even those times when I wanted to give up and quit and forget God and His word…it was in me so deep and my heart held His word with so tight a grip I couldn’t walk away!
About 7:30 I eat my breakfast and dress and check the computer. This is when I try to get the blog done as well. I want to have all that done before Chris’ aid arrives at 8. When she gets here I greet her and head out the door! I run most mornings. Then I come back and get my bike and run errands, like get groceries or toilet paper! I am limited to what I can carry home on my bike but I’m getting pretty good at packing my back pack!
I have to finish all my errands and be back about 9:45 as the aid helps me get Chris up and into the recliner. While I am gone she does his laundry and some light house keeping. She also bathes him each morning and gets him dressed. This has been such a blessing for me!!
Chris is up and in the recliner by 10. The aid leaves right about then. I offer Chris some food by mouth. He’s getting pretty good at eating this time of day. Then I bolus him and give him more meds. I then let him rest for a few minutes and I check my email or catch up the dishes.
Chris will stay up in the recliner until about noon. In that time I will do little exercises with him. I have to do an activity then let him rest a few minutes. It’s broken up into little pieces. Each day I just kinda have to find what will work and shoot for what he’s doing best that day. Some days he does well with the legs others with his arms. I usually try to stretch and work on that right hand some too.
At noon I get him back in the bed. I say that like it’s easy but it takes around 20 minutes or more depending on his level of cooperation! Once he’s in the bed I let him rest until about 12:30. This is when I eat lunch or take a shower – depending on which is most pressing at the moment! lol!
At 12:30 we work on sitting and standing. I stretch him again and work with sitting him up on the edge of the bed. Presently we are working on balance and him holding himself up. Then I let him lie down for a few minutes as even the smallest things can tire him out. Then we will do sit to stands. That means he sits on the edge of the bed and stands from the sitting position. He repeats one after another for about 5 is our max so far. He rests another 5 minutes and then we try to stand for our minimum of 4 minutes. We do not always get all of this in every single day. Some days we only stand and some days we only work on balanced sitting. It depends on what works well that day!
By 1 o’clock I generally have the lights out and him tucked in for a good low or no stimulus rest. I give him two hours of nothing! Of course I check on him and see to anything that might need attention during this time. From 1 to 3 is when I try to do writing for Dove’s Fire projects.
By 3 I need to bolus Chris again and give him his meds. After I let him rest a minute and let his food settle, it’s time to get up again! I get him up and back in the recliner. If the weather and Chris are cooperative this is when we may take a walk outside. Then he’s back in the recliner and we do some more little activities off and on, like tic tac toe! By 5 I offer him food by mouth again. This is still hit and miss but he’s getting more consistent.
Depending on when he gets tired I will put him back into bed around 6. He might watch a video or look at pictures or I might just sit and talk to him or read to him. But those are things I do throughout the day as well. We talk about current news stories (although I won’t let him watch the news… don’t need all that negative influence) like the rescue of the miners, or the earthquake we had the other day!
There are lots of other things I may do through the day like skype with a friend or watch a particular familiar movie and such..
I bolus him again around 6:30 or 7 – but no meds this time! Then leave the light on but put up some quiet stimulus like picture boards of friends and family. A little before 8 I turn the lamps on and hopefully he is settling down by then.
During the evenings I do my ptc sites, write articles for pay, discussion boards (I get paid to talk!), and work on any other writings that are pressing at the time.
That’s pretty much our day….