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Happy Father’s Day, Part 3: My dad’s final chapter

The following musings on Father’s Day are by ExCS Group Member and Contributor Chrystal. This is part 3 of 3.

As my dad’s condition got worse and worse, he stayed at home. For decades. He did his best. He kept a happy attitude. I think it was the last 2 or 3 days of his life that he finally lost his chipper attitude and gave up. Before that, for decades of horrendous Parkinson’s Disease ravaging his body, my dad kept his cheerful attitude. He was patient. He couldn’t speak, and most people didn’t have the patience to try to listen to him. I was always incredibly grateful when someone kind would actually sit and listen to him. Parkinson’s Disease is a disease that freezes up your body. It stops the throat from being able to swallow, the voice from being able to speak, the hand from doing something simple like brushing teeth or putting clothes on and off frequently (like for using the toilet). My dad could barely speak above a whisper. Each word was either strung together because he finally got the strength to speak it all, and we couldn’t understand, or it was one painfully forced out word at a time. Even in this condition, my dad still told jokes. Thankfully, for most of my life, he told the same jokes, so he would only need to refer to a word or two and we would know which joke it was that he was telling. My dad never deserved ANY of this.

While he was at home “being taken care of” by his wife, his hands turned black from dirt and lack of being washed. His teeth started to fall out from lack of good oral hygiene. (Remember, he couldn’t brush his own teeth anymore.) He couldn’t always make it to the bathroom and needed help most of the time once he was in there. So he often had a “potty jar” near him. (A large jug that laundry detergent comes in.) This was too often taken away from him, because his wife thought it was disgusting. It wasn’t until just a few months before he died that he got a real commode, and someone was hired to clean it out every morning.

My dad’s feet turned black from pacing the floor. His feet were so dirty. I never thought about it, and I didn’t live at home at the time. I was out of college and on my own. I came back for visits, but didn’t think much about all of it. My dad never complained. He was much too nice to complain. But he was being subjected to elder abuse. His wife hired Christian Science Nurses to come in to help. You know what sort of help they gave? They did the dishes. They emptied and loaded the dishwasher. Maybe they got my dad dressed, but I am not sure. They would come in for maybe an hour, 3 times a week. That was it. They were nice people. But were they actually doing any nursing? NO!

I remember my dad hiring a Practitioner to pray. She wasn’t listed in the Christian Science Journal, but was probably working towards that. She agreed to take his case even though he was on medicine. She was nice enough. Her bills were dutifully paid. My dad kept getting worse. (That Practitioner died too young a few years later, after losing her mobility and ending up in a wheelchair looking very frail.) The Christian Science Nurses were dutifully paid. My dad kept getting worse. My dad called other practitioners, even ones who were listed in the Christian Science Journal. My dad kept getting worse. He was on a full array of medicines. He kept getting worse. Every practitioner blamed my dad for his condition.

I remember coming home and seeing my dad’s filthy dirty glasses. I would clean them, and he would mouth, “thank you.” He loved that. A family member saw my dad at a family gathering with his black hands, and got a washcloth to wash his hands off. My dad mouthed “thank you” to this kind family member. Where was my dad’s wife during these things? Ignoring him. She has a never ending “to do list,” and takes daily hour long “prayer walks.” She did everything she could to avoid taking care of my dad. She hired people to come in. If she had to take care of him, she yelled at him constantly. I have yet to ever see a kind bone in her body appear. Oh yeah, that’s right, Mary Baker Eddy says that we aren’t made up of bones, therefore bones don’t exist.

I went to my dad’s house regularly during what turned into the last year of his life. I have never been trained in any way to take care of someone. I was a Christian Scientist at the time. I did my best, because I loved my dad. Another Christian Scientist came in every morning. We were having some sort of (mediocre) care for my dad around the clock at this point in his life. My dad was now struggling with Alzheimer’s and hallucinations. He needed to be watched so he wouldn’t hurt himself, mostly. He fell down all the time. He kept forgetting to use his walker and would launch himself across the room and fall. His falls shook the house consistently.

My dad also started having seizures. At one point, his breathing stopped. I was there at the home with the other person – a Christian Scientist who was hired to take care of him. My dad’s lips started to turn blue. I was basically hitting him and yelling at him saying, “Dad! Dad! Dad! Breathe! Dad! Breathe! Please, Dad! Breathe!” I was getting super upset. I yelled at the other woman to “Dial 911!” I hollered at her over and over. She laughed and laughed. She thought it was hilarious. She thought all of this was a joke. I was panicking and crying and screaming to get my dad to breathe and she was standing over there, laughing and laughing. Oh, I was also holding him up with my arms, because he would have fallen on the floor if I had let go. That’s why I couldn’t call 911, and desperately needed her to do it. My dad did eventually wake up from this seizure. I made a huge stink about this to his wife, and told her we could no longer give him the care he needed. He needed better care, he needed around the clock medical care at that point. He needed to go in to a care facility.

She and I both knew very clearly how much he never wanted to go to a care facility. So, she did what she did best; she controlled the information she gave to him. She was going away for a weekend to a Christian Science Retreat. She told him that she was going to put him in a senior care facility an hour away, and she would come get him in a week. My dad fought the idea, but eventually acquiesced.

After a few days, she visited him. He begged her to take him home. At this point, she had decided this would be his permanent arrangement. She told him in one way or another, “oh, you’re here for now,” or she avoided the topic all together: “I’ll be back next week.” My dad would try to speak as she left the room, “I want to go home,” and she would act like she hadn’t heard him. Finally, after a month of these shenanigans, she made it clear he wasn’t coming home. My dad stopped eating. He nearly starved to death. He was so dehydrated. His tongue was shriveled up, it was so dry. One of his arms was horribly swollen and scary looking. The facility rushed him to a hospital. The hospital staff said he would die within 48 hours.

At this point, it became apparent that we had to tell his dad and my dad’s siblings that my dad might die soon. They all rallied and came to visit him. To say their goodbyes. Because of the amazing medical care, my dad got better. His wife was so excited to see him drinking water. I sat there, seething at her, for having put him in this position. I had no clue what to do about any of it. But he was clearly getting horrendous care at this so called “senior care facility.” My dad drank water and drank water. He was so thirsty. He was released back to the senior care facility. His family came to visit him there. We all thought he would be okay. She thought that him drinking water was a healing. Because, of course it was. No mention of the IVs in his arm giving him fluids and sustenance over night and the medical nurse stationed at the doorway 24/7.

Within a month, my dad was on hospice. He’d made a few more trips to the Emergency Room for either pneumonia, dehydration or starvation. He had a very bad fall and cracked his head open. This required many stitches. I have since learned that when a person has a very bad fall, they may lose the ability to do basic things, like eating. It may not happen that same day, but within a few days, it may be clear that they don’t know how to eat. So people in a good care facility watch to see if someone who has had a fall, is still able to feed themselves. My dad forgot how to eat. No one noticed. He was living an hour away in a senior “care” home. His wife visited him once a weekend, for maybe a few hours at a time. The staff kept such horrendous records that they had no clue that he would go 3 days at a time with no food or water.

My dad was put on hospice. Hospice is actually a wonderful thing for people to be put on. It’s completely paid for by the state. There are no bills that come. Often, hospice buys the person a brand new bed. The bed is made to be as comfortable as possible. Nurses and doctors come and go and check on the person all day long. They read charts and administer pain killer including morphine. They listen to the patient and they will even play games with them. My dad made friends with his hospice nurses. My dad taught his hospice nurses to play Poker. The nurse looked at my dad, as he lay there, on the floor (to keep him from falling), and said, “he says I’m doing it wrong, don’t you?” And my dad smiled with his eyes. He had that happy glint in his eyes, the glint of laughter, even when he was on hospice care and had less than a week to live.

The previous summer, the doctor had given him a clean bill of health, saying he was going to live another 10 years. That was late one summer. By Christmas, my dad was in hospice and died before he saw the New Year.

Through it all, he always hoped to be healed through Christian Science. The last time he interacted with someone was with me. He was in pain, and on hospice treatment. I asked him, “do you want pain medication?” and he shook his head, “no.” I could see in his eyes that he was STILL hoping for a Christian Science Healing of the Parkinson’s Disease he had lived with for 25+ years. He was put on morphine the next morning. He was still a few years away from being 70, and he died.

After he died, I hit heavy grief. Of all the things that had happened to me through the course of my life as a Christian Scientist, this was the final straw that propelled me out of Christian Science completely. My kind, amazing, wonderful, sweet, friend-to-everyone, creative Dad died. His wife and I were talking about 1 month after he died. She was surprised that I was grieving his death. I seethed inside, that she had no pain about his death at all. She just went on with her life, glad to be done with the burden. She brags that she never shed a tear for either of her parents’ death, nor for my dad’s death. The woman is a stepford wife robot. She thinks she is loving and proclaims herself to be so. But all I see is cruelty.

In her surprise, she asked me why I was still grieving my dad’s death (only weeks later) and why was I so mad at Christian Science? I told her, “if ANYONE deserved a healing, it would have been my kind and amazing dad!” I choked out those words, I could hardly speak from the pain of it.

Her response?

She said, “Don’t you think if he had read more Christian Science literature that he would have been healed?”

Victim Blaming. That is clear victim blaming. You can read about Victim Blaming Here and more about it here. Christian Scientists are champions of victim blaming. If a person hasn’t received a healing through Christian Science Treatment, it’s their own fault for “not understanding it enough.” A Quaker Friend of mine who is also a doctor calls this, “the blame theory of disease,” so it’s not just a Christian Science thing.

To my dad:

You didn’t deserve any of this. You didn’t cause ANY of this. None of it was your fault. You were trampled by a horrible mom, then married two women who also trampled you horribly because you were denied therapy to help you understand your own pain growing up in such a horribly unsupportive home. You never deserved to be controlled or abused. If I had known then what I know now (after years of my own real psychotherapy to heal my own grief, anxiety, depression, ADHD), I would have turned your case over to a state agency. They would have inspected your home decades ago and taken you away from that abusive situation.

 

You cleaned up after me when I was a child. You were always kind to me. Above all, you taught me what kindness is, and through this example, I could see clearly what kindness isn’t. Thank you. I love you forever.

After my dad died, about 2 evenings later, I was watching the sunset, and thinking about my dad as I stood there, crying. I felt as if he came to me. I know some people will say I sound crazy, but I’m not the only person who has stories to share like this. If this was my imagination soothing me, so be it. It felt like my dad came to visit me. He was so excited. He was once again the happy man he was when he was between wives, and it was just the two of us living together. He was running around, with his healthy legs, and goofy grin. He was so excited to meet all these amazing historical people in the afterlife. He was talking with all of them and learning their stories. I feel strongly that my dad is now living the happy life he always wanted to – meeting interesting people, and listening to their fascinating stories. I feel like my dad is finally happy, eager, enjoying life. What he found too little of in this material life, I feel he has gained in the afterlife. I still miss him terribly, but I am glad to fervently feel that he is finally happy now.

Now, I’m off to call my dad’s dad and wish him a “Happy Father’s Day!” I am glad that he turned to medical care when he needed it. As a result, my kids have gotten to know him and he is still around to visit with and talk with. He is the last grandparent my kids have, and they love him so much.

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Happy Father’s Day, Part 2: Living with Parkinson’s Disease

The following musings on Father’s Day are by ExCS Group Member and Contributor Chrystal. This is part 2 of 3, part 3 will be shared on Sunday, June 25, 2017.

My dad’s first wife was never ready to be a mom. After she potty trained me (her only child), she left. She has appeared a few times in my life over the last 40+ years, but she has been mostly missing my whole life. My dad and I lived in subsidized housing for years. Then, he met his second wife, who earned a respectable income as a teacher several states away. My dad and I moved. As a child, I felt like she threw away probably all of our possessions except maybe my dad’s typewriter, a lamp his brother had made him, and my dad’s bed. As far as I know, none of my possessions moved with us to this new location. Well, except my favorite stuffed animal, which was later stolen by my bio mom “to remember me by.” (I found it in her possession 10 years later, horribly dirty, ruined and mangled, having been carelessly treated.)

One of the weirdest things I have observed with Christian Science is the control of information. In a future blog, I will talk about severe neck pain I endured as an adult, and how I hid in my house, forbidding anyone to visit me, essentially. It’s a common thing in Christian Science to keep knowledge secret. If you don’t speak out loud what a problem is, then the problem won’t be made more real. So, for god’s sake, keep your mouth shut about anything important. If you tell someone something good, they will naturally feel jealous (what control Christian Scientists think they have over other people’s emotions!), and that makes them break The 10th Commandment, and that will bring “Malicious Animal Magnetism” to your good thing, so it will be destroyed. If you tell them something bad, they will not be able to help you at all, and you have just voiced that a seeming problem might exist, and by breathing words into it, it’s now completely real, and harder to heal.

Listening to Christian Scientists give their Wednesday evening “testimonies,” is quite interesting. They sound quite a lot like this –

“I had the supposed belief of what might have been a cold. [Note: no symptoms.] I prayed to feel God surrounding me. I felt God’s presence open up to me as I read ScienceAndHealthWithKeyToTheScripturesByOurBelovedLeaderMaryBakerEddy. I knew clearly this idea of a cold could never be a part of ME! Because I am God’s Perfect Child, I am made in God’s Pure Reflection. There is no spot where God is not. I knew I was fully healed in that moment. And then, several days later, the symptoms released completely. iAmSoGratefulForChristianScience.”

My dad’s second wife was one of the most controlling people I have ever met. One thing she controls with an iron fist is “information.” If she wanted to tell a secret in front of my dad, she would say it in a secret “language” that he couldn’t understand. It’s similar to Pig Latin, but it’s not Pig Latin. We could teach this stupid language to our friends. It’s supposed to just be a little secret code that kids talk to each other in. It shouldn’t be used to abuse someone by keeping information from them. This is one example of her sense to control. My dad and I could both write upside down, backwards in cursive. Guess what. She couldn’t read it. My dad and I would write little notes about Christmas surprises. Well, she couldn’t read it, so that was banned. But this ban didn’t keep her from using her secret language. She spoke it faster and faster over time, knowing my dad couldn’t understand it if she spoke as fast as she could go. My dad objected when she did this, but she steamrolled over him as if she was more important than he was. Her whole intention to do this sort of thing was to inform her kids of something and have my dad stay completely in the dark on the issue.

My dad’s wife wouldn’t let him use the bathroom in the house to pass a bowel movement. I wish I was exaggerating. I remember my dad running in to whatever place we had just driven to, to go use the bathroom. She said, “you make a mess at home, so you’re not allowed to use the bathroom.” My dad was forbidden to use the bathroom in his own home. Holding toxins in is a horrible thing to subject someone’s body too. Toxins are meant to be released, not held in. (He knew how to clean up the “it’s just matter!” Why not just ask him to clean up after himself?)

It is my feeling that this directly contributed to my dad contracting  Early Onset Parkinson’s Disease that probably started in his mid 40s. At first he tried to treat it with only Christian Science.  

After a few years of trying Christian Science – in earnest – my dad was getting worse. His wife mentioned to their practitioner, “his thumb is still trembling.” Her less than compassionate response was, “he is still dealing with that?” She was exasperated that HE hadn’t healed it yet. Yeah. That’s because Christian Science doesn’t heal. At all. Let alone the fact that as the Practitioner, it’s HER JOB to heal him. Because if HE could do it, he wouldn’t have called her in the first place!

My dad and his siblings were raised in Christian Science (and left it, thank goodness). Two of his siblings and their spouses called my parents when they learned he was struggling with Parkinson’s and that it was becoming worse and worse.

At this point, he was now realizing his all time worst fear – he was in a Christian Science Nursing home. He needed full time care. The disease he lived with every day, had become rapidly worse, thanks to having no medical intervention at all. My understanding is that with early medication, the disease could have been radically slowed. My dad went from a fully capable person running his own business, traveling, speaking on TV, being in the news a lot, reporting on important topics of the day, to, within 2 years, becoming incapable of brushing his teeth and needing to wear diapers. He couldn’t do anything on his own any more. Parkinson’s Disease completely ruined his life. I wouldn’t wish that on anyone. Especially not my loving, kind, caring dad, creative, incredibly smart and funny dad.

My dad’s siblings and their spouses strong-armed my dad and his wife to make my dad go the medical route. My dad was in his 40s and had young children who needed their dad, not an invalid in a nursing home. So, my dad went the medical route. Being a Christian Science family, this was hidden as best it could for a long long time. Over time, my dad’s body froze again, and the Christian Science Church they were long time members at eventually kicked him out of the two activities he loved to do – being a Sunday School Teacher and being an usher at the door.

Because my dad’s comic book collection had been thrown out decades earlier, and he had been raised by a fear-filled hoarder that had survived the Great Depression, my dad was also somewhat of a packrat. He was able to keep it organized until Parkinson’s hit him, though. You might think that someone living with Parkinson’s Disease would be treated kindly and supportively by their spouse. At least most of the time.

However, at one point, when my dad had been dealing with Parkinson’s for more than 10 years and had rare moments when he could see and move clearly and clean up after himself, his wife said to him: “after you die, we are throwing all of this away!” My dad told her, “that’s a really mean thing to say.” He rarely spoke up to her. He rarely griped about her. He was far too kind. He did sometimes tell me that she was just awful and overly mean. This breaks my heart. He never dreamed of leaving her, and out of some sort of weird obligation, or more likely, “look at me, I am such a good person I won’t leave him and will take care of him,” she never left him either. The next blog post will share how “well” she “took care of him.”

Eventually, my dad’s (second) Christian Science Teacher told him not to come back to Association. He was too “distracting.” My study of The Holy Bible says that Jesus called the woman To him. The woman who was bowing down – he called her TO HIM. He didn’t say, “go away, you’re a distraction.”

And He was teaching in one of the synagogues on the sabbath. And, behold, there was a woman who had a spirit of infirmity eighteen years, and was bowed together, and could in no way lift herself up. And when Jesus saw her, He called her to Him, and said unto her, Woman, thou art loosed from thine infirmity. And He laid His hands on her; and immediately she was made straight, and glorified God.

– Luke 13: 10-13

My dad’s Christian Science Teacher did other horrible things, and one of these days I am sure I will get off my duff and write a letter to the Christian Science Board of Education and tell them what this clod did to my dad personally, and what inappropriate comments I heard him say in a Christian Science lecture all those years ago. I haven’t yet, but one of these days.

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Happy Father’s Day, Part 1: It’s Just Matter

The following musings on Father’s Day are by ExCS Group Member and Contributor Chrystal. This is part 1 of 3, part 2 will be shared on Wednesday, June 21, 2017.

It being Father’s Day and all, I would love to tell you about my dad. He was the most kind man I have ever known. He died a few years ago. I think about him all the time. I just woke up from a dream where I was visiting him and we were being goofy together. I enjoy seeing him in my dreams and I wake up from them feeling wistful.

This mini (3 part) blog series is a small peek into his life.

My dad was the oldest of 4 siblings. His mom converted to Christian Science, which is what his dad was. Both of my dad’s parents lived through “The Great Depression.” Grandma was a hoarder and very negative. Grandpa was an inventor and an amazing mathematician. My Grandpa made friends everywhere he went. He is in his 9th decade now, and all of his friends are dead. My dad also made friends everywhere he went. When I was a child, I remember my dad introducing me to what felt like practically the whole town. He knew everyone and they all loved him. He was so kind and funny. How could anyone not like him and want to be friends with him?

My dad collected comic books. All of them. He kept them very well packaged under his bed, in a box, in plastic sleeves. I guess at some point, his mom decided they were “junk,” so, despite her hoarding tendencies, she threw them all out. My dad set about collecting them again, and never got over the fact that she had thrown them out. They were valuable. His collection eventually paid for his first home, and then his second home.

My dad’s biggest hobby was photography. He loved it. He carried that camera everywhere – all the time. He was never without it. If my dad didn’t earn straight A’s in school, his mom took away his camera for a minimum of a week at a time, which felt like absolute torture to him.

Grandma always had a leg problem. She fell while traveling one year, and went to a doctor to deal with it. That shocked our whole family – that the Christian Science matriarch of our family went to a doctor. She had problems with that leg for the rest of her life. At the time, I was told that she eventually died because she fell out of bed & couldn’t walk. She was rushed to the emergency room and died like 48 hours later. (I later learned that it’s likely she had a stroke. This makes sense because as she lay in the hospital dying, she couldn’t speak.)

Grandpa wore contact lenses, and I remember the judgement he and Grandma had for themselves – they both drank decaf coffee at McDonalds and Grandpa wore the contact lenses. As a result, both thought they weren’t great Christian Scientists. Though both served the church as much as they could, their whole lives. Grandma dutifully arranged flowers for the church every Sunday. And Grandpa still ushers, though he is in his 90s and has had a few surgeries and STILL feels guilty for not being “a perfect Christian Scientist.”

Obviously, I am blogging on this web forum, so I am an Ex Christian Scientist. It breaks my heart to see my grandpa feeling “less than.” He is a kind, intelligent, thoughtful, generous gentleman. I would love to help him find his way out of Christian Science. He feels like a failure. But – he’s NOT. He in no way resembles a failure. He’s an amazing person, loved by so many people. (Happy Father’s Day, Grandpa, I love you so much, and my kids love you so much too.)

I would love to see my grandpa break away from the guilt he feels about drinking decaf coffee and the various surgeries he has had over the years due to “not being a good enough Christian Scientist,” but he is in his 9th decade, and I can’t change his whole life now. His friends are there at the church, his security is there, he knows how to drive (yes, drive!) to the church… That seems cruel to me, to get him to leave the church.

Well, back to my dad. He went through Christian Science nurse’s training. Having spent a few years training to be a Christian Science nurse, then actually being one, my dad’s biggest fear was to get put in a Christian Science nursing facility. In his experience, “no one ever left them alive.” Later, my dad was completely terrified of being put in a nursing facility. Not just a Christian Science one.

At one point, while working as a nurse in training, he was asked to clean a dead body. My dad was horrified and very scared to do this. He called up his Christian Science Teacher (who was eventually kicked out of the church due to cruelty), and she said to him, “it’s just matter.” This spoke to my dad somehow. And my dad was able to go clean up this dead body. Over the years, my dad was very good at cleaning up bodily fluids and dead animals on the road and things. It always made him deeply sad to see a rabbit or cat or dog on the road that had been run over, but he would promptly clean it up to save neighbor kids from seeing the animal bloody and dead on the street.

I remember being a little girl, and waiting too long to use the bathroom. I peed all over the floor in the bathroom. I completely missed the toilet. My dad quietly cleaned it all up. It has been probably 40+ years since that happened, and I still think about that. My dad never once yelled at me. He was the kindest man I’ve known. After my dad died, I realized that my dad’s dad is also one of the kindest men I have known. I wish both of them had been able to marry a kind woman.

In my dad’s case, he married two women who were both cruel. Thankfully, my bio mom had the good sense to leave. But my step-mom – everything I have ever told anyone about what she does and how she treats me, looks at me with shock. They are shocked at how cruel she was. I don’t want to go into all of it here. Christian Science women and Christian Science moms, it’s crazy how many stories I have heard of cruel Christian Science moms. It’s heart-breaking.

But, these posts are about my dad.

(To Be Continued.)