If you’ve come here directly without a link from post entitled The Interaction of Religious Beliefs and Caregiving, I urge you to go back there and read that page to give this post some context.
Thanks for asking me to answer this question, even though I’ve stopped reading the FB groups much any more.
My beliefs evolved long before I met my wife of 22 years and even longer before she developed FTD. I grew up in a nominally Jewish home. My mother lit candles on Friday night and went to services fairly often. My father considered him self Jewish but worked essentially seven days a week making a low level living as a mechanic in NYC. We lived in a Jewish ghetto, virtually all of out neighbors were Jewish, all of the other kids in my grade school, except for 3 or 4, were Jewish. I never thought about god; god was a given and had these laws and I pretty much followed them. It was easy because my entire world did the same.
All of this changed when my father lost his job and we relocated to a small town in rural New York where he worked for his brother in a print shop. I was the only Jew in my junior high and then one of two Jewish boys in the high school. And I suffered for it. I was called names, beaten up, tripped, even pushed down stairs. All of this was done in the name of whatever their flavor of Christianity was. I had a couple of Wasp friends but, in my senior year, I got disillusioned when they continued to go to parties that I wasn’t invited to ‘because I was a Yid.’
So by the time I left high school, I wasn’t thinking much about god but I really, really hated and distrusted Christians. If whatever god they believed in, let them act like that towrds me, I wanted no part of it. I considered myself a secular Jew, I was proud of my heritage and our concept of morals but the idea of a supreme being in the sky just never made sense.
My college was large enough that I could find a circle of like thinking friends and eventually I realized that a good many of my friends actually weren’t Jewish but were nominally Christians and they seemed OK. I met my wife who left Catholicism when she left home and was so rabid about it that there was just no talking to her about it.
During the time when we had children in school, we attended a Unitarian church, which was as close to being Jewish as one could get on a Sunday. Belief in god wasn’t an issue, just being moral and ethical was.
My wife had always been in poor health, diagnosed with a chronic problem that she seemed to fancy. Her endurance and activity was limited and our social circle became quite small. We grew accustomed to having only each others company because we never found another pair of people where we both liked both partners. I had my good friends and she had hers and, except for occasional dinners with other couples, that worked well.
Her diagnosis was made relatively early in the disease by a local neurologist and then confirmed at a major center. Our two children had been raised to be independent and the unfortunate result of that is that they became independent and each had established successful careers a long distance away. As soon as her disease became obvious and limiting, her friends just dissolved away so except for occasional visits from children, I had no support.
That was the most traumatic time, the initial attempts at dealing with the grief. Even though I knew there was no ‘why’, under the pressure of the actual diagnosis, I needed to understand, to see as much as I could.
At that moment, which lasted for quite a while, I really wanted to believe. I wanted to have some faith that there was something behind this awful trick that nature had played on me. I wanted someone or some thing to blame – or even to believe in. If there was no cause then the disease was just a casual joke of probability and all my life had little meaning.
I went to speak to a Unitarian minister and then a rabbi and from them I got sympathy but no inspiration. I certainly didn’t see any reason or any reasoning will behind my wife’s disease. I am a well educated professional, my life has always been looking at effects, understanding the causes and then looking even further back to establish the chain of events.
When I asked for reasons, I was exhorted to belief because there is reason but it is unknowable to us mere humans. They were saying, in effect, ‘forget what your eyes see, forget what you know, disregard all that and just believe.’
Yeah, that doesn’t work for me.
For me this disease was the nail in the coffin of belief. I was no longer an agnostic; looking at the evidence of history and my senses has driven me beyond that to make me an anti-theist.
I used to be tolerant of casual theist statements, just ignoring them for the sake of getting along. When people said they would pray for me, I would just smile.
I can’t do that any more, and that explains why I no longer participate or even read FB support groups. When people post quotations from their bible or exhortations to believe and things will get better, ignoring all evidence to the contrary, I have to restrain myself from asking how is that working for you? Is your loved one speaking or understanding or even continent? Couldn’t your god hear your prayers and just make them stop crapping their pants? Couldn’t your god just let them die with their dignity and your feelings intact?
I have reached a place of calmness and just accept things as they are.
I’ve filled my life with things that don’t remind me of what others believe. I have a couple of close friends, I’ve learned to cook better and take great satisfaction in making my wife as happy as she can be.