Help for Healing

Bitter & Sweet, living daily with grief


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Yes, I’m Really Gonna Try That Again

Dave has decided he wants to be a personal trainer. We won’t discuss the fact that he thinks he doesn’t need a college education. I just won’t even talk about that part because I GET TOO MAD.

Anyhow, I’ve done nothing but gain weight since a) I have a significant other and b) I had my surgery in October and my foot isn’t even remotely better yet and c) oh yeah, I love sugar.

Recently, I just got told I can walk Taffy three times a week, never two days in a row. I can only go less than a mile and I can’t go in the woods. That is the extent of the exercise my foot gets.

In a moment of insanity, I thought that I could support my son and improve myself at the same time so I asked him to come up with an exercise plan for me. Tim joined the gym a while ago and he is allowed to bring a guest so maybe if I go with him, he will start going too.

I detest the gym. I detest exercise. I really, really, really do. But Dave immediately got into it and planned my routine. We are going to video him doing the exercises because I know I won’t remember how to use the equipment. When I asked him what to blog about today, he told me to blog about this so I guess he’s into it.

Lord help me. I’m not sure when we will start, but I really need to do something. Maybe this plan will be good for all of us in different ways. If you are someone that prays, now is the time to start. I mean pray with all your might because this goes against every molecule in my body.

This is one area where the apple falls far, far from the tree. Look at how ripped this kid is!

I can’t even fathom this is my son!


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To Be Fair…

I’m not sure if I’ve ever blogged twice in one day, but I felt this warranted a P.S..

I was able to speak to the investigator that took my initial complaint. She started by saying, “I thought I would be hearing from you.”

She is a very ethical person and could not say a lot of things to me about the process of what happens. My intuition tells me she would have if she could have. The wording on the letter, while polite, makes it seem cut and dried. All I could think was that doc was having the last laugh.

She was able to verify that my understanding of what is supposed to occur is indeed accurate. There are many levels of investigation and their goal is to correct whatever errors there are. Hopefully, a doctor only needs one complaint in their career to get things in order.

She was also able to let me know that she spent hours and hours on this case like I did. She also assured me that the physician’s that make determinations did as well. I felt heard and that helps immensely.

While I couldn’t get anything specific out of this very ethical (and compassionate) woman, I would dare guess that this went further than a letter. I suspect that while it didn’t go to the very top, there may have been at least one conversation. That is a really big deal in the medical profession.

My goal was never to crucify the guy. I just want him to get what he did. I want him to understand that he was wrong and I don’t want him to do it to anyone else. I am hoping he will change his perspective on what his job is as a professional.

I will never know if that happens, but I feel some relief in my stomach. I feel like he was at least told and informed as he should have been. What happened to Dad was taken seriously. Very seriously.

And if she is just blowing smoke, I give her credit anyway. She did a great job making me feel better about the whole process without betraying any ethics. Thank you so much! I will rest much easier tonight than I did last night.


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Why Do I Bother?

I received a letter that was most disturbing. It literally took the wind out of my sails. I felt my energy drain out of me and within 15 minutes I found myself in bed at 730 pm, checked out for the night.

It was from the Department of Health. It read like this: “Upon completion of the investigation, based on all the information available to OPMC (Office of Professions, my parenthesis), there is insufficient evidence to bring a charge of professional misconduct…”

I couldn’t believe it. And it has thrown me into another existential career crisis. This was so obvious and blatant to me, my jaw (and heart) dropped.

Ignored my dad’s request for help with his pain for four business days.

Refused to order a catheter at dad’s request, in spite of Dad being a serious fall risk due to the Parkinson’s and the nature of his infection. He even went so far as to say, “If you aren’t willing to take an antibiotic, I’m not letting you have a catheter.”

Blatant bullying behavior toward my father with statements like, “You understand this infection could kill you and you still won’t take the antibiotic?” And the most unprofessional of all, “Well, if this is what you want for your life, peeing your bed, going to the bathroom every 30 minutes, you just keep right on refusing the antibiotic.”

Requiring a conversation with the Hospice CEO before agreeing to a catheter, but refusing to read the texts that came directly from that CEO.

All of that is disgusting, but could be stretched to say it’s a matter of opinion if you really want to go out of your way to defend him. But what is NOT debatable, is the professional, ethical and legal responsibility of a doctor to RESPECT A PATIENT’S WISHES AND RIGHTS. Dad had his ducks in a row. He had a legitimate, accurately completed MOLST form. It is without doubt a clear expectation of every medical professional to respect that. So many more details I won’t take the time to write.

This doesn’t get easier with time. If fact, the more times the ball is dropped and justice is not done, I get more and more angry.

Why do I bother? Yes, because it’s the “right” thing to do. Honestly though, I spent hours and hours documenting what happened, filling out the proper forms, and speaking with investigators at length. I was told that this case would most likely go very high up the chain because the behavior exhibited was of such a serious nature.

And now this.

Nothing. How do I not throw in the towel like most people do? Why should I be the exception and continue to fight and never give up? I am seriously questioning if the things I pursue are a good use of my time and energy. I would not apologize for being emotional about my loved one, but this was not about that. There were repeated unethical acts against Dad and something drastic needs to be changed.

But it’s obviously not going to happen. Not on a professional level, not on a state level. And even the facility has chosen to keep him employed in spite of the havoc that was caused by his behavior. And oh yeah, a man more than worthy of an honorable and peaceful death got nothing of the kind.

I’m pissed. I’m disgusted. I’m crying. I’m angry. Disheartened. Wondering if I should even bother anymore. I’m bitter – that grieving my father has been more painful than I could have imagined and now AGAIN, it’s clouded with this utter nonsense.


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Agony of De-Feet

I have been told throughout my life that I have very pretty feet. It’s a consolation for having a stomach that makes everyone and their sister ask me if I’m pregnant. At least my feet are nice. I have to say though, they definitely have taken a beating.

Remember this from 2012?

Darcy's foot xray

That picture was worth re-posting. That was David’s 10th birthday when I stepped on a nail when doing yard work. (No, I obviously didn’t have shoes on. Did you have to ask?)

Two weeks ago I had a second foot surgery. My doctor asked me if my surgeon knew how I was. You know, never stopping or sitting down. I told her of course he did because he did my other surgery. Besides, I’ve slowed down a lot over the years.

Today I went in to get my stitches out. I knew it was going to be ugly because I know what a baby I am. What I didn’t expect was how awful it looked. I had Tim take a picture because I knew you would want to see it too.

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First of all, it makes my foot look ginormous. They are actually not very big. The marker is from the doc when he did the surgery. All the purple though, is bruising. No, it usually isn’t that bad for most patients.

I don’t mean to be a bad patient. I really don’t. I’m not trying to be a hero. I don’t want any more damage to be done. I was pretty proud of myself for being as still as I have been the last two weeks. But the more we talked, the doc just kept shaking his head at me. He wondered why I didn’t actually follow the written instructions he gave me.

The second week, I just assumed things were “as needed” (even though it wasn’t written that way) so no, I hadn’t been taking the anti-inflammatory medicine three times a day. No, I haven’t been icing twice a day. I wonder why the foot is swollen and inflamed?

Yes, I did go to Dave’s cross-country meet by myself, on crutches, in the rain where it was so muddy and slippery people were falling. But I couldn’t miss it, right? And yes, Tim and I painted the bathroom last night and Tim doesn’t do trim so yes I had to be on the ladder.  Oops. Ok, I guess I didn’t do as well as I thought.

By the way, I was only using one crutch for the last week because it was easier. Turns out I was using it under the wrong arm. Duh. I honestly had no idea. That one wasn’t my fault. And it’s just unfortunate that I was using it under the shoulder where I am already in Physical Therapy three times a week for it. But hey, I stopped going to therapy so I could take it easier these last couple of weeks.

Sigh.

I admit it. I’m not the model patient. But if they only knew how good I thought I was being because of all the things I DIDN’T do!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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When end-of-life care magnifies the pain

I’m cheating this week. I am going to post an article in the Buffalo News that I wrote and was published yesterday. I love the title the paper came up with. Care is supposed to diminish the pain, such irony. The response to the article has been amazing. I have gotten emails from people telling their own stories, asking for assistance in guiding their journeys with their loved ones. I am especially excited about one from a geriatric doctor who I will be meeting with to discuss how to attempt to make positive changes in the system. I think it’s worth posting it here for those who aren’t local or don’t read the paper. Please feel free to share your own stories and experiences!

“After losing Mom and my husband, writing books about it, and becoming credentialed as an Aging Life Care Manager, I assumed approaching Dad’s death was going to be the best death I had the privilege to be part of. I know that sounds strange, but I had become educated and knew when Dad switched to palliative care, when his time came, he would not suffer. I promised him that.

I had absolutely no idea what I was talking about.

Over the last decade, I became increasingly involved in his care. He had Parkinson’s and we began the journey of educating ourselves the hard way. After treating swallowing issues and bladder disorders for years, we were finally informed they were symptoms of Parkinson’s. Itchy skin. Blood pressure. Is there anything this thing doesn’t touch? It’s a slow progressing disease that makes life miserable but doesn’t have the courtesy of actually killing you. At least not for years and years.

My family and I helped him “get his affairs in order” over time. He slowly made changes financially and legally to put him in a good position. He sold his house and eventually landed in Assisted Living, just down the street. While it seemed crazy expensive, finding out about a VA benefit made it almost affordable. He would have three meals a day, have his apartment cleaned, and his laundry washed.

We made sure his medical papers were ready. We had lots of discussions about his wishes so I could be a good Health Care Proxy if need be. By the time he turned 85, he had lived a good life and was ready for the next and a reunion with his wife.

In July, Dad starting experiencing pain. Spoiler alert: Two of the last three weeks of his life he lived with increasing pain. I knew our medical system was broken, I just didn’t realize how badly. Medicine has become a for-profit business, which usually means money is more important than patient care. No matter how much I advocated, I couldn’t beat the facility or the medical persons they contracted with. It became crystal clear they didn’t understand palliative care or that palliative and hospice were no longer interchangeable. More importantly, they didn’t want to. Professionals should inform patients of treatment options and expected outcomes. The decision to treat (or not) should be the patient’s, not the doctor’s.

I could not get the administrators to see what was happening. The staff would often shudder at what they witnessed but were powerless. His primary would not prescribe enough pain medication and refused to order a catheter in spite of his fall risks. There was blatant refusal to accept his MOLST (Medical Orders for Life Sustaining Treatment). It finally culminated in them blocking Hospice from treating him. Yes, you read that right. Eventually they were cited by the Department of Health for failure to comply or I can’t imagine how bad Dad’s suffering would have gotten.

I later discovered that about four years ago, regulations were drastically changed. Dying is not enough to gain Hospice care. You have to have a terminal illness to qualify. How do I keep heralding the advantages of palliative care if there is no one to help folks when they get to that point? Hospice can’t be happy about this either.

I will never, ever forget the look in Dad’s eyes when he was hurting and I could do nothing for him. The several individuals who refused to do proper research and care for him appropriately should not be practicing. You only get to die once. Why should a decorated Korean War veteran, after working his entire life in an American factory, and was a volunteer firefighter for 60 years, have to suffer at the end of his life? If you can answer that, please tell me. I would do anything to make sense of it.”


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Eulogy

I’ve been asked to remember to post the eulogy so here it is. I hope that it does my father justice.  Just a couple of pictures to show the bookends of his life.

Dad

David August Thiel was born on April 7, 1932. But that is how these eulogy things always start. Yet for me and my family, it feels like he deserves something special. Something that captures the essence of who he was to us.

I find myself struggling because in truth, it was dad’s ordinariness that actually made him extraordinary. He was a gentleman. A gentle man. Soft spoken. Predictable and dependable. In other words, you could count on him. He was a man who took responsibility seriously.

Dad was a man of honor. He didn’t talk about his time in the military much, but he served during the Korean War. He has a devastatingly handsome picture from that time. His eyes were like a movie star’s. In a confusing time in our country, we are so proud of his service.

He and Mom met at a dance. They got married December 4, 1954. On their 50th anniversary, Mom wrote this: “They say a good man is hard to find—I found one! You are a good husband, great provider, the best dad and we are fortunate to have four wonderful kids and eight delightful grandkids. It makes for a wonderful family. I’ll follow you down that ‘forever path’ …like it or not.  Three years later, Dad lost the love of his life. He lived on the best he could, but some losses in our lives have such a profound impact on us, we are never quite the same again. One of the greatest comforts for us is knowing he is reunited with her.

Working at the water treatment plant at Harrison’s for well over thirty years also earned our respect. He went to work every day and I don’t remember him ever complaining. Very rarely did he take a day off work. Until he retired of course. Then they traveled all over the place, seeing the things they always talked about seeing.  They had camped lots of times in their lives, but it started with new fervor when they purchased a motor home. They deserved that time together.

After working all day, Dad came home to the farm. He and mom sold asparagus for years and raised our own beef. The first cow we had I named Billy. After Billy ended up on our kitchen table, I never named a cow again. My old siblings, I mean my older siblings tell me they remember Dad hunting. I don’t ever remember that, but after the Billy fiasco, I’m not surprised. What I do remember, is snowmobiling. We belonged to a club and of course, Dad was president.

You can’t know Dad without knowing how committed he was to the passion in his life- volunteering at Terry’s Corners firehall. He was honored last year for sixty years of service. Sixty years! His nickname there was “Moses.” There are lots of opinions as to why he was called that, but I assume it is because he was a formidable leader.  He was a firefighter, fire police, fire chief at least three times that we know of. Bingo, drills, installation dinners, gun raffles, chicken barbecues. I haven’t even been alive that long and he has been working hard all that time. Wow.

We’ve learned so many things about him, right up until the fat lady sang. I had no idea my dad was such a charmer. I mean, who would have thought that someone whose high school nickname was “Squeal” was going to be a lady killer. Every doc, every nurse… heck, they would come see him even if he wasn’t their patient. He would get this big smile and be teased about being such a flirt. Nurse Amy didn’t even call him by his name. “Handsome Pants” would get called right across the room whenever he walked into the office. That trend didn’t stop in the end. The last few weeks he was surrounded by his family 24/7.  Sometimes he wouldn’t be able to respond to us and then the cute young thing called an aide would walk in and he would suddenly be responsive. I considered renting a uniform and pretending to be a nurse.  And then there was the scandalous relationship he had with the married woman next door to his apartment. He claims she had dementia and wandered in accidentally but I’m no fool.

Truth be told, Dad was a hot commodity at Elderwood where he spent the last year of his life. Men were outnumbered about 4 to 1. And most of the men there were cranky. Dad’s good nature and good looks caught everyone’s eye. Some would show no embarrassment when they would tell us how the “other” women there were chasing my dad. Every once in a while I would toss out something like, “You know, he IS a stubborn German,” hoping to comfort them but they didn’t buy it.

Also like a good German, Dad could be pretty stoic. He was NOT a man who wore his heart on his sleeve. We never doubted that he loved us. Not because he showered us with hugs and kisses and repeated I love you’s, but by his provision and unwavering presence. His humor would make it impossible to be frustrated for long. We’ve had a running joke with him most of our lives. 99% of the time, saying I love you Dad would be answered by “yeah.” If we challenged him with a louder I SAID I LOVE YOU DAD, we would be answered by a louder YEAH.

The last week of his life, Dad couldn’t leave his bed. He could barely communicate and could only sporadically do so. One of those days, Lisa and I had him trapped. It wasn’t very difficult in his condition of course, but we found ourselves sitting on either side of him in the bed. We both told him we loved him. I held my breath, as I realized that I would have done anything to hear one of those “yeahs” that really meant I love you too, but he seemed too weak to answer. I said, “Dad, aren’t you going to say it at least once to us before you go?” He surprised us when he was able to say, clear as a bell, I MIGHT.

My father was ready. We think it is incredibly brave and courageous to be able to evaluate your life and recognize that you feel finished. That takes humility, which seemed to come naturally with his personality. To grow older gracefully and look forward to what is next to come takes a human of great character. And Dad was certainly a character. Oops, Freudian slip.

The things he stood for in his quiet way are simple. Honest. Hardworking. Faithful. There, year after year after year. The truth is, they just don’t make em like that anymore. In a world where most of us shake our heads in sadness or confusion several times a day, my dad represents a better time, a better person. Our love and connection to him runs deep. He never faltered so the steady confidence we felt with him in our lives was a true treasure and gift. The cavern that is left behind for us is indeed a ginormous one. Please, lets us make a pact to honor his memory by filling that cavern by following his example. Be someone that others can draw strength from. Be someone that others know they can count on.

From Sue, Randy, Lisa, and myself, thank you for being here. Be like Dad and you will do well.

Lisa, Dad, Darcy

 

 


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Hanging On

I’ve been doing a lot of reflecting the last couple of weeks as I’ve attempted (with my family) to help Dad navigate the beginning of a different life – the next life. A life without Parkinson’s and all the other malarkey here.

As I write, he is hanging on. He’s been hanging on for several days. He’s given me a lesson in humility as I keep realizing that no matter how much education or experience I have, no amount of prediction is full proof. After my fourth or fifth “this is it” was completely wrong, I stopped trying to guess.

My doctor asked  me today if I was ready for this to happen. I told her that he and I have been talking about this for well over a year. I want this for him, because he has wanted it so much. What I was not prepared for, was how difficult this has been. Dad did all of this “right.” He filled out his forms, got all his ducks in a row and his affairs in order. I told him the beauty of palliative care is that it would be painless when the time came.

Boy was I wrong. I already knew that palliative care that is apart from Hospice is a new concept. I knew that accepting mortality is a tough idea for people to grapple with. I just didn’t anticipate how ginormous the gap actually is. At one point, I had his primary doctor tell me that medicine is not practiced “that way” in America. He truly thinks I have some wacky idea that doesn’t even exist.

The place where he lives is also way out of tune. I approached them back in January and warned them this would be coming. Of course, they ignored that conversation over the last eight months. The result has been devastating.

I pointed out that Dad is only the beginning for them. As this idea catches on, there will be more and more people. Someone finally asked why amazing, compassionate health care is only found at the end of life. Someone finally realized that patients should be driving their own treatment, not medical staff. Now the movement has begun but it is even more difficult than I could have imagined.

That has been the hard part for me. If Dad has to go, I wanted to help him have it on his own terms. A hard-working war veteran should have the right to end his life the way he wants. And he definitely should not have to suffer because of that decision.

We finally have Hospice, but it was the battle of all battles to get it for him. There is no do-over, no second chances with end of life stuff. I just have to hope he knows how hard I fought for him. We eventually succeeded, but he suffered longer than he should have before he got “comfortable.” Damn it to hell!

Please pray for him. He is tired and ready. He seems to have a hard time letting go. I want so much for him to be able to relax into what lies ahead for him. It’s almost over, Dad. You just have to let yourself embrace it. You so deserve the rest and healing that is waiting for you.

dave (1).JPG