Twenty Questions

Well roadside adventures, tornadoes and blizzards kept me away longer than I liked, but I finally arrived in Missouri last night to lend a helping hand. Chester was delighted to see me and was able to crack a joke basically about me being scary but he could handle me. He also was able to verbalize about the possibility of last sunsets. Unfortunately, those two times have been the only times when he could string words into short intelligible sentences since I have been here. His increasing frustration with his inability to form the words he wants and our instability to decipher his stock words and phrases like "all the way back", "all the way home" and "oh god" exhaust him and all that try to assist him. He continues to confuse yes and no, "acceptable" is a more accurate barometer of when we get something right for him. We finally hit on playing "Twenty Questions" as a more effective way for him to express his needs. His understanding is keen and he can nod or say acceptable if I ask him simple yes or no questions like "do you need me to get you something?", "do you need me to do something?" Once I get an affirmation on get or do, I can ask a series of simple yes or no questions until we ascertain what he wants. Asking him a lot of questions may seem like a lot of work, but he is actually really relieved not to stuck saying words that no one understands. I have framed it as going with his strengths right now which is his understanding and not forcing a weakness which is his speech. The look of relief on his face with figuring out a systemic way to communicate, because you know with Chester there is a PROPER way of doing things, has really made my day. You know how his whole face just lights up when something works?

With some headway on communication, my next focus is keeping him clean, dry and comfortable. He hasn't wanted to get into his chair today and last night he went to bed right after dinner. He is so tired that he not only needs help getting his legs into the bed, he also needs help moving his hips to get him aligned in bed. Right now, I am hopping over him and using the pads to get him aligned in bed. Tonight, we will rearrange his room a bit so I can get to both sides of the bed to position him. The family really wants to keep him at home until he passes, I am committed to staying here for the duration to make that possible. We will have to make a few adjustments to make it doable. For example, I can roll him by myself to change the pads but not enough to change his bed until we move it out from the wall. He opted to just have me change soiled pads instead of him getting into his wheelchair so I could change the whole bed. A small rail would help him be able to sit up at the side of the bed, this morning I have had to pull him up into a sitting position to use the urinal.

Hospice was initiated last week as his doctors have told him there is nothing left that they can do and there is no reason for him to return back to them. Several hospice personnel will come by later today to check in on him. I will be talking with them about the little things that will help us take care of him here and protecting our own bodies. Because you just know what Chester would say to us if we hurt ourselves from improper body alignment and support!

They tell me his computer has been acting up and I know his network is down. Later on today, I will take a look at it and read him his emails tonight or tomorrow. Even if he is no longer really able to communicate you in writing or verbally, he does cherish and take comfort in your thoughts. Nancy has asked me to keep you all updated and I will post on the blog. Feel free to call me or email me if you have any questions. The house phone does wake him up, but he seems to sleep through the ringer on my phone (206) 321-4414.
Bean