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Wednesday, June 1, 2016

Even Less Sugar: Running Out of Respite

Hello, friends.

For the past two weeks, Ian has been working hard at rehab. This stint has looked different than others, as he has had some decline in ability and mobility, but still he has made measurable progress in some areas. 

I don't want to focus on the deficits other than to say: he doesn't walk, he transfers. He doesn't use his right arm/hand, but he can eat just fine with his left 😃 .

The biggest issue is, and will likely always be, his inonsistent braining. Yes, he has declined in this area overall, but its very unpredictable nature has made this quite the experience in navigation. 

Example: his physical fatigue is easily correlated to time of day and activity. Late in the day, don't ask him to stand much. Ok- good, we can work with that. 

But right out of the gate, in the morning, we have a 50/50 chance that his brain will be talking to his limbs. Is he able to follow directions ("move your right foot," "now sit down")? or are we going to struggle with each direction ("Your spoon, hon. Use your SPOON."  And if that's the case, (and this is important), how will things be in an hour?? 

In other words, we're up and down, day to day, as well as within the day. I say things like "good braining day," but that's oversimplifying this web of confusion we live in. 

On Sunday he will return home. He's anxious to do so; hospitals are lonely, and I think maybe much more so for someone who is frequently confused and/or has little short-term memory. (Not knowing what time of day it is, what day it is, who was in to visit, etc). 

Back at the house, I have people helping me getting things more Rev-Ready. An outside ramp is in the works, in-home therapy will begin, and we're still working on that stair glide and shower ... 

In short ... the hard work will begin again, in the home setting. I'm going to call on those who have offered to help so we can maintain sanity and maybe squeeze some normal into our days, at least for the kids' sake. 

(Caregiving burnout is a very real thing.)

2 comments:

  1. Dear Lord, please touch the Maize family with your healing hands. Show each of them how they can support Ian during this difficult time without making it a burden. Keep the family strong and remind them that they are truly loved by many. I pray all this in your precious Name. Amen.

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