#advocacy – this is our life

Snarky

Thanks to Burt, I have become a kinder human being. Now that he is no longer around to mitigate my snarks, I find myself admonishing, oh shit that’s not nice.

Recollecting Burt’s time in the rehab center today gave me a little relief although the memory was hard. The fact that I could affirm that I stood for him when he needed my protection felt good. The nursing home-rehab was not a good place. I would not have placed Burt there over the long haul.Continue reading “Once upon a time”

What was I thinking

There is actually a name for what your loved one with dementia is going through when s/he first denies the diagnosis. It’s not denial but something like a not knowing. My sincere hope at that point was that Burt would know, that he would understand. If he accepted the dementia, we could work together onContinue reading “What was I thinking”

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”

To care and protect

My mission since Burt’s diagnosis [the big scary dx] more than 4 years ago has been to protect him. Of course. That’s it. I have pinpointed my malaise. I can’t fix this as one of the prompts in my grief writing support group put it. That phrase sums up my frustration in the most succinctContinue reading “To care and protect”

It’s not imminent

We all die alone; it’s our ownPersonal drama. Noone should Take our spotlight. I will stayAs witness. I will not let him goAlone. I will be the chorus to hisAgamennon, the Fool to his Lear Burt’s decline, as I have mulled it over and over, is a dark time for me. It is also darkContinue reading “It’s not imminent”

Advice from self

“Stick to your knitting” might be apt in these moments where my anxiety over my husband’s condition runs headlong into my feelings of patriotism and citizenship. I think I can do both. Worrying is a well-honed skill. I am more than capable to juggle the two. Neither is a small concern. There. I have interjectedContinue reading “Advice from self”

Relieved?

It was a relief of sorts to realize that Burt’s decline of yesterday was due to a raging fever. The fever, after a night with Tylenol, is in a more manageable range. I am ashamed of myself for being so angry and impatient over Burt’s inability to get out of bed. How unkind of meContinue reading “Relieved?”