Witnessing a loved one suffer any long, drawn-out illness is painful. Of course, it is. When my mother was diagnosed with pancreatic cancer and given six months to live, it felt like we were embarking on this together. I wasn’t the one who would die, I know, but we faced her last days in solidarity.Continue reading “Caring”
Category Archives: “it’s a brain disease”
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”
Rapid
My sense is that Burt started his path in LBD at an advanced stage. From the get-go he went from a period of apathy to being fully confused in what felt like 60 seconds. Capgras was one major symptom; little people enhabited our home; he needed reassurance that he was home. Meds helped a lotContinue reading “Rapid”
Awareness
In trying to keep a positive attitude over our situation, I also try to find humor when I can. This doesn’t mean that dementia is not a dreadful disease. As it is Lewy Body Awareness Month, we need to stay aware of just how devastating LBD is. All dementias occur as some necessary protein inContinue reading “Awareness”
Who?
I was going to stop posting or post more discriminately. Then… This morning, Burt was doing his who are you little darling routine. It’s his memory game in which I hear about the other wives and often how badly I treat him. Today, we reconciled. I recounted our many years together. So far, all quiteContinue reading “Who?”
Sadness, no Sorrow
We need to grieve our sorrow. So do our sweethearts who are afflicted. I specifically said “sorrow” rather than sadness. It’s a deeper and more encompassing emotion. It seems that as his disease progresses, Burt grieves less. He appears to be less aware of his situation; if that is so, I am glad for him.Continue reading “Sadness, no Sorrow”
Chug chug
The Lewy roller-coaster has taken a small uphill turn. Burt’s no more cogent than he was at the slip down the slope. The change is more to do with his engagement with others. He’s happy to greet those he passes and more interested in being around others. We’re still surrounded by extra wives (now again,Continue reading “Chug chug”
Emotions
I have talked about how emotional Burt has been. Lewy Body Dementia is often described as a roller coaster (hate ’em) because of fluctuating symptoms and variable every thing. It’s also a roller coaster of moods that can shift in a minute or a heartbeat or an hour. For him, I would think those changesContinue reading “Emotions”
The battle continues
Here are some of the things Burt’s lost along the road our journey has taken: The construct of time. It is a made-up thing. He was right about that early on. He would say, “Why is it day or night?” Well, not so much right on that point. Time is a man-imposed measure, but natureContinue reading “The battle continues”
In his shoes
It was a purely serendipitous occurrence. I got up to go to the bathroom in the middle of the night. I leave the lights off, not to disturb Burt. My hand accidentally brushed against the switch. I turned it off again, and the sudden darkness blinded me. I reached for what I thought was theContinue reading “In his shoes”
this is our life 