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”
Category Archives: Grateful
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”
A day off
Burt was asleep all morning and now all day. His aide and I shared the space, texting and reading on our phones. After an hour and ½ trying to stir him, I decided to make Sunday a respite afternoon. I went to cast my ballot. Called some of my peeps, enjoyed the crispness of theContinue reading “A day off”
News? Not much
My love thinks he met yet one more new wife. Today, this gave him qualms. Briefly. Can I have more than one wife at a time? I said you’re the exception to the rule. It’s ok for you. He is very happy with this one. She’s mostly nice to him; an exception to that wasContinue reading “News? Not much”
The things we still share
Much is lost as LBD progresses. That doesn’t mean we’ve lost everything to this disease. We still exchange affection in words and deeds. We kiss. We hold hands. We express how very very much we love each other. Often. He still says thank you when he wants to show appreciation. More importantly, Burt still knowsContinue reading “The things we still share”
That village
It takes a village. Hillary Clinton on bringing up children but applies as well to how society runs Good neighbors. They have provided continuing support for me. My personal cavalry when, one day, Burt was so agitated about going out to the street that he rammed his walker against a wall. Down he went. AContinue reading “That village”
Help is on the way
As a caregiver, it’s easy (and way too common) to feel alone on the journey. In many ways, we are. The idea that no one is coming to our rescue when we are in the throes of a Lewy episode; the feeling that the worst moments are the ones only we can handle is provocative.Continue reading “Help is on the way”
Superstitious
I am not a believer. I am an atheist. Without a religious allegiance or a belief in a god or an afterlife, you would think I would be free from all other superstitions. In fact, I inherited much of my magical thinking from my mother. She, too, disdained religion, but lord she had a worldContinue reading “Superstitious”
Workshop thoughts
He’s looking good. The invisible burden. He’s doing well, they’ll say. No response to that makes it any easier. Yes, it’s a progressive illness, and we’re doing what we can. He has good days. I’m glad you got him on a better day. Your visit certainly perked him up. In truth, I have rarely hadContinue reading “Workshop thoughts”
Taking it to the streets
We are still scheduled to walk virtually with CaringKind on Oct 19th in CentralPark. You may throw some support to Team Burt here at the link for a fundraising page for sponsorship of our passive walking: https://give.caringkindnyc.org/fundraiser/5610000 Promoting or joining othet walks: The Alzheimer’s Association has walks all across the country. Their Manhattan walk isContinue reading “Taking it to the streets”
this is our life 