These are the times that try our souls. In light of the advent of big trouble in our nation’s social and political landscape, I found myself asking Burt for advice. I started by saying I was glad he was out of this and safe. If he were here I would stand silent to avoid anyContinue reading “A conversation”
Category Archives: Decisions
It isn’t but
It feels like betrayal. I know it isn’t, but since I say Love is lovlier how could I? Since Burt’s been bedbound, I felt it was time. Since he’s in such a decline, he couldn’t participate. I met with his doctor to file a MOLST on his behalf. We also opted for a palliative approachContinue reading “It isn’t but”
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”
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”
In the public eye
This occurred to me today: It is not fair that I have violated Burt’s privacy in describing our journey. I have shared his delusions with you; I have lamented his decline; I have exposed his hallucinations; I have described his terrors and his joys. It should be enough that his Lewy Body Dementia diminishes him.Continue reading “In the public eye”
Advocacy
A provider is giving me a hard time over my healthcare proxy. They’ve refused to discuss Burt’s plan of care until they vet my proxy. This morning, while mulling my frustration, I thought oh come on. I have the marriage certificate.* That should be proof enough. [*Side note: a beautiful copy of this docunent arrivedContinue reading “Advocacy”
Proper (med) regimen
We have Emily Dickenson to thank for the wonderful image that gives hope all this lightness. We can always use some feathers whether we are caregiving or not. It was definitely a better choice when I returned Burt to his morning meds first thing. He has, in consequence, returned to some measure of sharpness. TheContinue reading “Proper (med) regimen”
Do as I say…
Out of desperation over difficult mornings, I switched morning meds to early afternoon. I had reservations about this choice but got the approval of his doctors. At the time of my decision, Burt was fighting taking his pills in the a.m. and sleeping late. I needed to get out of the house for my dailyContinue reading “Do as I say…”
Rx for saving
Not really part of my assignment, but I think this might be helpful. I have had great luck in saving on Burt’s prescriptions with Single Care. It’s an app. Or they will send you a savings card. The dollar amounts have been impressive enough for me to want to pass this on.
Decisions
As this disease progresses, the caregiver is obliged to make decisions for her beloved pwd. Mine lost most of his executive function with the first blush of his illness. Nonetheless, he could participate in some decisions I made on his behalf. He refused all medications in the beginning. I felt it was his right. HeContinue reading “Decisions”
this is our life 