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”
Author Archives: TheRealTamara
A poem of our time
I say, “Yes. We are together34 years.” I know to you itFeels like we met yesterday. Yesterday. A new experienceFresh. Who are you? WhichWife? Where did we meet? Questions. Wide-eyed likeYou never asked them, or I Never answered. We met.I am impatient, but shouldNot be. It really is the firstTime you’ve asked where When. Who.Continue reading “A poem of our time”
Paying the piper
The cost of care is astoundingly high. My time has come to get some help with those costs. Fingers crossed. It would be unrealistic for me to try to meet Burt’s needs without the aid of professional aides. I know Burt’s needs will only increase. It’s a scary proposition. Medicaid is an option for someContinue reading “Paying the piper”
You are invited
This is a Save-the-Date Burt turns 85 this November. He had a downturn. Then, the Lewy roller coaster started back up the hill. Sure, there’s a new baseline that has him looking less like the coherent engaged Burton of 2023, but…. Today, he showed gratitude along with his affection. He’s interested in people and activities.Continue reading “You are invited”
Sidebar
On aging In my early 70s, not so very long ago, I was going on [pretty] wild Spin Rides at a gym on W49th. It’s an experience I can’t imagine having now, although I can recall it vividly. The Spin room had a screen on which were projected travel destinations. Some were real and hilly.Continue reading “Sidebar”
On the side
Things happen as we get engrossed and distracted by caregiving. I managed to misplace (a polite way to say lose) our marriage certificate. I feel a lot better about it since Googling that replacement can be done easily and online. Looking for the missing item also gave me an opportunity to sort through documents. The rearrangementContinue reading “On the side”
Where our lives diverge
It’s another one of those losses. We once went to movies, watched TV series, and enjoyed outings together. Burt would have enjoyed The Marvelous Mrs Maisel with me. Now I’m seeing it as respite when he’s asleep. He can no longer follow any plot. He’s way past the point where he would get the humor.Continue reading “Where our lives diverge”
You know the phrase
I love him to pieces. You Know that feeling. You’veSaid it before. Now, I alsoSay, “I love him in pieces.”As he falls away, stumblesIn his mind, loses his way.Reasoning is gone, his andMine; I, too, am less rationalI, too, am lost or losing myPath forward. I, too, am soEmotional that I can cry in AnContinue reading “You know the phrase”
Psychosis
Cognitive function, executive function, bradyfrenia, autonomic system, bradykinesia. There are so many impairments as Lewy bodies take over, and our loved one declines. Psychoses. There’s a scary word. And those are the hardest aspects of LBD to manage. I watch out for falls. Hold onto him for dear life sometimes to maneuver him onto aContinue reading “Psychosis”
Stay calm
My role as a caregiver to a person with [Lewy Body] dementia demands I get acquainted with psychosis. A calm and contained demeanor is preferred to one in which I freak out. In a tour of an exhibit in which art and psychiatry crossed paths, it became clear to me that the psychotic makes meContinue reading “Stay calm”
this is our life 