It’s my private pain, I avow. It feels a little unseemly to be airing it so publicly. I’ve admitted to oversharing. This daily note-taking and sending it out to all of you – isn’t that major information-overload? It has also felt like I was invading Burt’s privacy. He’s not sharing the intimate details of hisContinue reading “Why do I”
Tag Archives: #challenges
The balance sheet
What’s become easier in Burt’s last decline? What’s harder?
It’s heavy
In my encounters with friends and acquaintances, I feel heavy. Physically, of course, I am. It is the sorrow I carry in my heart that makes me feel weightier. This, I think, at each conversation is not the gravitas I hoped to achieve. I have toned down the impulse to spill it all. I noContinue reading “It’s heavy”
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”
Slipping away
I hear myself saying, “I love you, truly, madly, deeply.” Why am I always quoting, inserting film titles or song lyrics?, I ask myself with mild annoyance at the habit of anchoring my affections in cultural history. I think it’s to acknowledge how normal it is. To love and to care, to adore the manContinue reading “Slipping away”
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”
Expert advice
I am no expert on this disease. I play one around my house, as it were. I am as flummoxed by new behaviors as the next hapless caregiver. We have been thrown under this bus. Each of us. The onset of dementia in your partner can lead to confusion. His and mine. Burt and IContinue reading “Expert advice”
He knows me, he knows me not
«That’s not a very LBD thing,« my support group leader mentions. It’s not, and I resent that. There had been «a promise« that I would not be forgotten. The word was people with Lewy Body Dementia tend to always remember their loved ones. It’s not like Alzheimer’s. Well, Burt knows I am important in hisContinue reading “He knows me, he knows me not”
Redundant
My takeaway from the discussion was that the brain protects itself by holding redundancies. Well, that was one of the points I gleaned from Neil DeGrasse Tyson’s StarTalk with Daniel Levitan (and Chuck Knight) on music as our first language. Why redundancy? It would be a way for the brain to keep and store informationContinue reading “Redundant”
Amazing
In Down down up, I made the case that there was no denying Burt’s impairments. He’s no longer tethered to his Wall Street past, except for his frequent talk of money and time. He doesn’t see the companion of his journey by his side but lives with lots of imagined company. (Let me clarify, althoughContinue reading “Amazing”
this is our life 