A sea change

Burt’s roller coaster has just been on one dip after another. His being bedbound poses a serious risk.  Today we are expecting a visit from a nurse from VNS to assess the damage. We are treating two sores and the beginning of one on his butt cheek. Perhaps the nurse will have some added wisdom.Continue reading “A sea change”

Best practices

One of my goals for this site is to offer guidance where I can. I want to list some ideas and tips that I have found handy on our journey. 1. Burt had some trouble vis a vis food early on. It worried me. I was feeding him lots of lemon meeingue pie and eggsContinue reading “Best practices”

The alternating

We got Burt an alternating air pressure mattress. [Amazon carries everything, and Medicare waits until pressure wounds are a dire concern before providing this remedy.] He was lifted (as usual, these days kicking and screaming) into his wheelchair so his aide and his OT could set up the bed. I sat with him in theContinue reading “The alternating”

Me me me Time

A Lament Let’s face it, I have me-time even when I sit with Burt. (How do you think these blogs get written?) Most of the time, there are no pressing and time-consuming needs. There’s a little quiet conversation. It’s not challenging or sustained. Often, it doesn’t even include me as Burt’s focused on some fantomContinue reading “Me me me Time”

Changes

Burt seems less restless, even calm, despite the endless chatter. He’ll say he’s scared, but it isn’t urgent. In other words, the prediction that this declining state would be “easier” has come to fruition. His aides can give him water or juice. He’s amenable to eating if they feed him. Burt now entertains himself inContinue reading “Changes”

Xtra xtra read all about it

Today, after resisting when our weekend guy put him in a sitting position, Burt settled into it. He relaxed and held himself up. This was unusual for him as he generally sinks back. Not unexpectedly, he started talking. His narrative ran into unfamiliar territory as he started discussing getting up. We perked up. His aideContinue reading “Xtra xtra read all about it”

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