Tag: Parkinson’s Disease

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

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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.