March 14, 2022

I wanted to share a couple things that Edna has mentioned to me: She said "John is always a gentleman". It's true. He always wants to help, and make sure other people are safe. He gets upset when I am upset, and is frustrated that we don't ask him often enough for his opinions or for his help. She said they often go to the chapel at the church that houses EasterSeals. It's a beautiful room built by a friend of ours. John and Edna go there to pray. They pray the Our Father and the Rosary. And they pray for others. It's such a beautiful picture. Another thought - This one is a quote from Seth Rogan. Seth Rogan is a comedian whose wife's mother has Alzheimer's. They have created an organization called "Hilarity for Charity" that uses comedy to raise money to provide respite for caregivers. He said "There's a disease that's killing our parents and grandparents and no one seems to be doing anything about it. One day it's going to kill us. It hasn't become trendy to care about ... Part of that is because it's really despressing and there's not a lot of hope associated with it." A good friend and coworker of John's wrote a bit about John on Facebook. She wrote about John's job at SCIF and that she knew something was wrong with him. She wrote "HE told people there was something wrong with him. He simply was not behaving in ways that were consistent with what I knew of his character. He was my good friend for 25 years. People who knew him for less than half that time accused me of being too loyal and making excuses for him. He lost his job. I'm still angry and will never forgive the people who hounded him instead of helping him in spite of his pleas for help." Yep. Me too. I won't be forgiving them either. But I'm relieved that he no longer remembers the way he was treated after working there for so many years. It was a job he loved and he considered the people there his family. Clearly that wasn't reciprocated by many of his coworkers. Alzheimer's has stripped John of all he'd been building in his life. It's a disease where its sufferers are left clinging to the barest threads of who they were. And the threads just keep slipping through their fingers. There have been some noticable changes in John in the last month or so. Sometimes he can walk into the bathroom and brush his teeth. Other times he can't figure out how to do it and needs step by step instructions to get the job done. Sometimes he has trouble putting on his socks and shoes, othertimes he just does it. One time I had to tell him 6 times where to throw away a kleenex. As they say, it's the little things that break your heart. Over and over again. Sometimes he gets mad and frustrated with me and says "Go call Susan!" I try to remind myself of an Alzheimer's adage - that he's not giving me a hard time, but he's having a hard time. I wrote once about an article I read about ambiguous loss. Now I've read a couple books about it. Basically ambiguous loss is that weird position where someone is gone psychologically, but is still present physically. It's that weird place where you mourn the loss of your loved one while they're still alive. The author says that the standard for a caregiver can't be perfection, but the goal needs only to be good enough. Dementia caregivers are notoriousy stressed (they die at a rate 63 percent higher than people in the same age group who are not caring for someone with dementia) because the problem can't be solved. You can't ease their suffering. You don't know when it will end. You don't have control of your life anymore. You don't know if you're doing a good job. And there's no end to the stream of losses. However, finding the good things along the way develops resiliency, and resiliency is needed to carry you through the journey. The author (Pauline Boss) quoted a woman who said after her husband died of dementia "Now I was really a widow. Not just a widow waiting to happen." That speaks to the weirdness of ambiguous loss - normally grieving starts when someone dies. With ambiguous loss, grieving begins before death. It's described as a constant state of mourning. Grieving and mourning loss after loss after loss. Well that's enough cheerfulness for one evening!