Oversharing, longer answers than the question called for is the hallmark of my current convos. A neighbor asked how I was doing. She was sincere, but I tried to be brief. Midway to just saying, “we’re ok, thanks.” I proceeded to add, “we just got him a hospital bed, so that’s a whole new levelContinue reading “I did it again”
Tag Archives: #challenges
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”
A question of time
Recently, a kindred caregiving spouse wondered how many hours of care she should consider for her husband. She had been going it alone, and with all her heart and love. Anyone who’s been there knows how intensely draining and lonely this can be. There comes a time on this journey when caregivers need relief. ForContinue reading “A question of time”
I am so relieved
Now I really am relieved. The fever Burt was running appears to have hit normal. The thermometer stopped its red scream and went to a peaceful green this morning. His head was cool to the touch. We haven’t heard what the picture that XRay Tommy took in our home looks like yet. But Tylenol seemsContinue reading “I am so relieved”
Fears
Paranoia is a frequent visitor as we age. I think it’s because the old know they [ok we] are vulnerable. For those with dementia there’s a greater feeling of susceptibility. Your p.w.d. may seem unaware of having a malady, but s/he senses that there is something off. Paranoia seems like a way to protect ourselvesContinue reading “Fears”
A deep dive
In the abstract, I am fascinated by the mechanisms of Burt’s disease. In reality, the manifestations of Lewy Body are overwhelmingly sad. Trying to deduce patterns is part of my close study into all things Burt. I want to see what prompts his irrational conclusions and how his fantasies develop. There probably is no pattern,Continue reading “A deep dive”
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”
What is slipping away
As Burt’s Lewy Body Dementia progresses There is no logic, so Burt has odd explanations of how things – even in his own body – work. Being able to define tasks, follow through, and find order go out the door with logic. Things he knew and understood are forgotten. This is not memory loss it’sContinue reading “What is slipping away”
Food’s still an issue
It’s never one-and-done with Burt of course. He’s returning to the not willing to eat phase. His dinners are mostly pureed in an attempt to ensure they go down smoothly. Sometimes it works, sometimes he needs to get sweets to fill him up. Desserts tempt him. He ate half a pineapple cake* with his aideContinue reading “Food’s still an issue”
Equivocal grief
I have been doing my shareOf grieving lately. I say shareAs if it were an apportionedAmount. A pinch of salt, dashOf cardamon. Measure yourGrief in a beaker, a basket, byThe pound or a bushel. I doNot even know what a bushelIs. There’s the song, “I love youA bushel and a peck,” it adds”A hug aroundContinue reading “Equivocal grief”
this is our life 