The jingle about Jello Instant Pudding® is running through my head right now, but honestly this is a serious post about a serious question. The other night, Burt, in the midst of his confusion, was lamenting how “sick” he feels. My response was to tell him that whatever was bothering him, hurting him and upsettingContinue reading “It’s never too late”
Category Archives: #dementia
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”
Sweet
In some ways, he’s more my child than my husband. He seems to acknowledge this on some level when he refers to me as his mother; of course, when he does, it’s part of his confusions, delusions, and hallucinations. When I came back from an unusually late outing in which I enjoyed the hospitality ofContinue reading “Sweet”
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”
On Repeat
This is our life is getting to be a bit repetitious. We manufacture our own excitement when dealing with Lewy but there’s all that shucking and diving, ducking and jiving. And lots of calls to say again. On Saturday I ignored Burt who did not settle down again last night and listened to 2 ConanContinue reading “On Repeat”
This guy
Lewy lou-ie
I can do nothing to make Burt know who I am. I feel like I should be able to force the issue somehow. It is heedless and needless to allow his who-are-you’s to distress me. It’s the disease. Our weekly outings are very exhausting. In the evening, when we get home, he has to askContinue reading “Lewy lou-ie”
Abbrev
In caregiving circles, there are lots of shortcuts by which we communicate. This is not a glossary, just some abbreviations that come to mind: We never seem to shorten (seems right as the work isn’t shortened) caregiver or caregiving. There are lots of symptoms that also maintain their long form. Reduplicative paranesia is a mouthfulContinue reading “Abbrev”
Nod like you mean yes
For the sake of a quieter life with Lewy, I should learn to be more agreeable. It’s a reflex for me to correct for the sake of accuracy. Does it really matter? If he says we should go up there, pointing at the ceiling, for dinner, no long explanation that we live on the topContinue reading “Nod like you mean yes”
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”
this is our life 