Some things I remembered this morning When Burt was in the rehab after a fall in which he broke a hip bone during a bout with Covid, he’d call me with an escape plan. He said we could meet by the front door and sneak out to go home. He’d wake his roommates yelling outContinue reading “Falling”
Tag Archives: #changes
Ides
Beware the Ides of March? Is that the 13th, no 15th, and it’s past. You have passed. I have been beware and aware since you first presented with odd differences. The days we went all over town visiting doctors with an answer to why you were seeing double. We shrugged when you returned home sayingContinue reading “Ides”
Careful what you…
When Burt was newly diagnosed, he was feisty. He was difficult. He was contrary. His willfulness made it hard to divert and redirect him. He would argue, fight, and dispute my plans for his care. I would say (or think about) all those stories I had heard of dementia patients who were sweet and docile.Continue reading “Careful what you…”
A sea change
Burt’s roller coaster has just been on one dip after another. His being bedbound poses a serious risk. Today we are expecting a visit from a nurse from VNS to assess the damage. We are treating two sores and the beginning of one on his butt cheek. Perhaps the nurse will have some added wisdom.Continue reading “A sea change”
Today
He is sleeping more. Some days, he sleeps through a meal. Other times, we skip his night time meds. These are mostly to help him sleep so that’s okay. His constant talk is baffling. It’s hard to tell what he’s saying. He often talks in his sleep, although even when he’s awake I often can’tContinue reading “Today”
Valentines
Speaking of the day of hearts and flowers, and I did mention it, this is another particularly difficult holiday. It’s that love stuff that gets us. Most of us have seen our marriages transformed by Lewy [or, really, any dementia]. Intimacy is not what it used to be. Love, of course, is a resilient andContinue reading “Valentines”
Burt’s ups
There was a decline, and now he is showing a little pick up. A little one but marked by chattiness and some connection. He’s more engaged this week. He appears to know me a little better than he did. And lord, does he love to talk. He is still chatting with his make- believe friends,Continue reading “Burt’s ups”
A treat?
Standing in an aisle at Duane Reade, I realize that I won’t be bringing Burt a chocolate treat. He can’t eat chocolates the way he once could. I’ve been breaking a little piece into littler pieces for him, but he’s not getting the kick out of it anymore. Now, I add dark chocolate syrup toContinue reading “A treat?”
Am I repeating myself
When our podiatrist visited, her shock over the change in Burt over two months became my shock. There is no escaping the fact that a progressive neurodegenerative disease degenerates. It’s the only progress it knows. Those of us who are living with it are serially surprised. It often or sometimes takes other’s eyes to showContinue reading “Am I repeating myself”
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”
this is our life 