Is it possible that we are watching too closely? We see declines. We worry. We are concerned with their comfort. We look to manage this disease. We know we can’t prevent the inevitable, but we look to head it off at the pass. Sometimes, when we pay so much attention, we give ourselves more worries.Continue reading “Paying attention”
Category Archives: Lewy Body
Feels like a job
It’s a new revelation at my end of the caring experience. I started thinking of my often funny, sometimes difficult honey of a man as a job. I hate myself for that, but there it is. He is work. Many of us thrust into this kind of role feel unqualified. I am ill-suited to beContinue reading “Feels like a job”
Partners
The loss of a partner is a difficult loss. When your love has dementia the loss is kind of on-going. He can’t provide the support he once did. He can’t be the partner he wants to be. Burt is constantly saying “if you have a problem, come to me.” He is sincere, but he can’tContinue reading “Partners”
One day at a time
This cliche of better living is a caveat not just for members of the 12-step community but for anyone wishing to enjoy a more balanced life. Ironically, it is in the throes of my husband’s difficult diagnosis that I found a way towards “living in the moment.” At first, I was thrown by every changeContinue reading “One day at a time”
It’s sad but clear
We are preparing to let our loved ones go. It’s impossible to predict if we are headed to a long-term care facility. It’s hard to tell how long we’ll have with them once the disease starts. It’s even hard to guess where and when the next phase will take us. As I started my journeyContinue reading “It’s sad but clear”
Resistant
My guy doesn’t make it easy to help him. Some two years ago, he had trouble swallowing. He was limited in his eating for quite a while, yet he mocked “the chew doctor.” Instead of working on the issues, he resorted to a diet of lemon meringue tarts. I practically did a dance when heContinue reading “Resistant”
Inspiration
There is plenty of help along the road as we journey with Burt’s dementia. Teepa Snow, whom I have dubbed “the dementia whisperer,” offers priceless online advice and interactive sessions for caregivers. YouTube is an outlet for her superb videos. You can find Careblazers there as well, with Natali Edmonds providing lots of guidance forContinue reading “Inspiration”
Respite
It’s frequently a piece of advice which some caregivers have come to resent. It is given in a spirit of concern, but some of us feel it is de trop. “I know I have to take care of myself,” one of my confederates said. “I don’t need to be reminded.” Take care of yourself. IfContinue reading “Respite”
Burt’s p.o.v.
The last couple of days, he’s brooding over how long he has left to live. He says 28 but means 2028, which is 8 years after his dx in 2020. I say no one can predict, and 8 years might be an average. My husband is a brooder. Before his diagnosis, he tended to beContinue reading “Burt’s p.o.v.”
From the other’s perspective
It’s easier to speak of the “job” we do as caregivers and how hard things are for us. It’s more of a heartbreak seeing things from the point of view of our beloved. Dementia is very hard on them. My husband explains that he has a brain disease to people he knows. Sometimes, he isContinue reading “From the other’s perspective”
this is our life 