The perspectives of people caring for loved ones with Alzheimer’s is “worthy of a show unto itself,” as Krista put it. Indeed, many of the people who wrote to us when we first released “Alzheimer’s, Memory, and Being” articulated the full range of emotions — pain, love, anger, bewilderment — that caregivers can feel. And while this week’s show references the caregiver experience, it’s not at the center of Krista’s conversation with Alan Dienstag.
He’s now in the process of developing a new therapeutic initiative for caregivers called “Ina’s Story,” which is based on the first person account of a former patient, Ina Feidelman. She spent 10 years caring for her late husband Arnie, who suffered from both Alzheimer’s and Parkinson’s.
Here’s an excerpt from that account, titled “Needing Help”:
“People began to tell me that I should get help in the house. My children my brothers and friends were all concerned about me. They were worried that I was ‘killing myself.’
I put Arnie in a day program 2x a week from 1-4 PM. He hated it. He only wanted to be with me. I hired an aide to do some food preparation, to shower him and so on and it was pointless. He would not accept her, and he was angry. He only wanted me. She lasted three weeks. He told me, ‘I know it’s hard honey but I don’t want anyone to take care of me but you…I need you here with me.’
I said, ‘But Arnie, I am being worn down. I can’t do it anymore.’
I was it…
I cried a lot during this time. I used to cry in the shower, it was private time. That was when I let it hit me…
And I was very angry. Why had this happened to us? I actually had the thought that maybe we were too happy, that somehow things were too good and it had to be taken away from us. It sounds crazy now, but that is what I was thinking. I remember discussing it with my brother, he said “Ina, you were dealt a bad hand, that is it, there is no reason.” I believe that is true, but that is not how I felt then.”
Ina’s story is powerful, Dienstag says, because the trajectory she experienced, both practically and emotionally, is so typical of caregivers: “Our hope is that we can use it to help caregivers who are at the beginning of the process that she has already completed.”
He also hopes this new project will motivate caregivers to seek psychological support in greater numbers: “The truth is that many caregivers fear (and sometimes hope) that they will not survive the experience of caring for someone with dementia and, remarkably, many go through this without any help.”
Dienstag and Feidelman are seeking funding for the project while they develop more written materials.