Supported was a tangent that derailed my intention to discuss support groups. These have been a vital life-line on my side of the journey. Early on, his first neuro team at Mt Sinai guided me to regular sessions with their social worker. What a gift that was. The social worker from his current neurologist’s officeContinue reading “Support groups”
Author Archives: therealtamara
Supported
Burt has me and his excellent aides as his support. He gets visit from a very caring OT and PT team. He also has a fantastic crew of doctors and nurses from Weill Cornell Center on Aging to keep his well-being on track. It’s not easy maintaining his quality of life at the best itContinue reading “Supported”
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”
Love is lovelier
Oh dear. The second time around. 🎼 For me, the second time is really the years after diagnosis and the symptoms. I am the second wife, but Burt is my first. And only. I know, I am laying it on with extra schmaltz. There is something to what I heard from a recently widowed LBDContinue reading “Love is lovelier”
To care and protect
My mission since Burt’s diagnosis [the big scary dx] more than 4 years ago has been to protect him. Of course. That’s it. I have pinpointed my malaise. I can’t fix this as one of the prompts in my grief writing support group put it. That phrase sums up my frustration in the most succinctContinue reading “To care and protect”
The honeymoon is over
It’s not for me. I am saddened and relieved that I am no longer the most important person in Burt’s life. No, there isn’t anyone else, although during Lewy’s tenure, he’s had infatuations. Early in the journey, he asked our lawyer about divorce so he could date one of his caregivers. Why not? She wasContinue reading “The honeymoon is over”
Collateral damage
Burt is in the line of fire as Lewy takes more and more of his self. I feel for his losses as I do for my own. He spoke of himself in the third person today. “Does Burt know?,” he asked. I don’t understand so much of what he utters these days, but I heardContinue reading “Collateral damage”
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”
Time passes
A gratitude Time is an ironic boss. It passes. It moves so slowly that it’s as if someone forgot to release the break. At the same time (or by the same token), it rushes past us in a blur. In those instances (in those moments), we are caught off guard by the whirlwind. We sometimesContinue reading “Time passes”
Me me me Time
A Lament Let’s face it, I have me-time even when I sit with Burt. (How do you think these blogs get written?) Most of the time, there are no pressing and time-consuming needs. There’s a little quiet conversation. It’s not challenging or sustained. Often, it doesn’t even include me as Burt’s focused on some fantomContinue reading “Me me me Time”
this is our life 