Help for Healing

Bitter & Sweet, living daily with grief


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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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Screwed Up Priorities

Frankie is an avid athlete. He gives 110% for any sport he plays. Currently, he is a cross-country runner and a hockey player. You can see his effort and passion just by looking at him.

DSC_5798.JPGI have been making sure lately that I am thanking his coaches. When I go to meets or games, I am often appalled by the behavior of other coaches and parents. We have truly been lucky to have had great role models 90% of the time.

At a recent hockey game, I was sitting near a kid who looked like he was in sixth or seventh grade. He yelled on and off during the entire 75 minutes of the game. His mother sat next to him not responding in the slightest. He was belittling the referees by calling them “zebras” and “blind zebras” over and over again. At some point, everyone gets frustrated with refs and yells out, but there is a difference when you are denigrating them. If for no other reason, this young kid should show respect to them simply because they are adults. What is this kid’s future going to look like?

Cross country showed some unsavory characters as well. One coach was screaming at the guys, “You are running against these guys. They are not your friends. Stop running with them.” I can’t give you the intonation in written word, but it was awful. Frankie’s team supports each other and have each other’s backs. They cheer each other on and want everyone to be successful.

The worst was when I was talking to the girls after their race. They were talking about the moms from one of the other teams. She said one mom yelled out to her daughter, “At least you can burn off those calories you ate last night at dinner.” I was proud of our girls for realizing that was inappropriate. Plus, they had seen how that girl reacted to her mom and it wasn’t good. All I could think about was how she was a shoe-in for developing an eating disorder.

Competition is good for us. It motivates us and challenges us. Not everyone can have a trophy. But what I adamantly believe, is that my son needs to be a great human being first, and a great athlete second. Winning is NOT everything. Character IS everything. I’m extremely grateful for the coaches and parents we are surrounded by that seem to agree with that.

By the way, I’m pretty damn proud of Frankie- his skills as well as his sportsmanship. Well done!


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Car Shopping with a Counselor

I’ve heard it more than once or twice that people tend to spill their guts around counselors. Kinda like hairdressers, bartenders, massage therapists. It’s just what happens. I think with me, it’s more because I’m so damn intense emotionally, that it draws it out of other people too. Now, I didn’t say I’m emotional, but intense with emotions. Who knows, maybe there is only a difference in my imagination.

Almost everyone I know hates car shopping. You would think it would be fun and exciting, but it is usually stressful. Spending that amount of money, combined with making a decision that will affect the next eight to ten years of your life, it’s no wonder it feels like too big of a decision. Now add to it that most of us expect to be ripped off. We know they aren’t really going to give us their bottom life offer, even though they say they are.

My dad almost always had trucks, pretty much his whole life. They were his babies. He took meticulous care of them. We had talked about my possibly trading in his truck for a new car and I was worried I would break his heart. He was ok with it, thankfully. But now consider this intensely emotionally person taking her very recently deceased father’s pride and joy to be traded in. Even my boyfriend was like, “Yea, I have to say, this was the most stressful and emotional car shopping experience I’ve ever had.” At our age, that’s saying something.

Let’s just say that after the first three-hour visit with a sales girl, she looked at me and said, “Remember, it’s just a car.” Then I informed her that wasn’t the case for my dad. It was his baby. I started crying with frustration because we couldn’t come to an agreement for a price. Next thing I knew, she was crying too. Oh man!

Two days later, I am on speaker phone with the sales guy I have worked with for decades. He starts to have a mini meltdown with me due to the inability to come to a purchase agreement with me. I talk him down from the cliff and then he ends up disclosing some very stressful personal stuff. Love that guy, but only shopping with me would there be this much emotion spilling over everywhere.

After way too many hours and days, I did finally get a vehicle. I ended up back at the place where I had the woman crying. She was off the day I actually purchased but I got to see her a couple of days later. The employees there have each other’s backs so they made sure she got her part of the commission. She certainly earned that one.

 

IMG_20180912_082546330_HDRIt’s cute, isn’t it? Safe, good mileage, got a decent deal. Honda HR-V Sport. My insurance agent asked if I was having a mid-life crisis. I told her I was just sick of the color black and feeling like I live in the world of death and dying. Besides, Dad’s truck was red. Doesn’t that count for something?

Anyhow, perhaps you can relate to the car buying stress. I wouldn’t recommend taking me with you, though. Just saying.


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Here Again

For a supposed grief expert, I sure forget the basics sometimes. I find myself crying at odd times over odd things and get surprised by it. Then it finally occurred to me that it has only been two and a half weeks since Dad died. I preach to everyone that grief takes a long, long time. I’m not even close to being finished!

Continuing to cooperate with investigations about the fiasco that surrounded his death certainly keeps everything fresh. And it ignites the anger all over again too. I don’t mind spending the literal hours upon hours to do this. But am I going to feel that way if at the end of it all nothing happens?  What if nothing changes?

I’ve said it before and I will say it again. I keep learning new things and witnessing situations where I realize that the level of dysfunction in our medical system goes deeper and deeper. Will it ever get better? Is it even moving in the right direction? And will someone like me even able to make the tiniest difference?

I love the picture I posted last week. Dad looks genuinely happy to have his daughters with him. It is freaky weird to think that was only two months prior to losing him. He looks healthy and full of life.

The first thing that set me off was a form letter I received. I talk about this event ad nauseam every day. Seeing “we have been informed of the death of David Thiel” is pretty straight forward but it knocked me off my feet. I just started crying. Colin made me feel better. He saw it and said that it is indeed difficult to see it in print.

Thanks to the countless  number of you that have sent cards, donations, food, flowers, and just plain old check in calls. So many people knew him and think he was a stand-up guy, just like we do. There is a big empty hole in my gut that is going to be there for some time. Not sure what will start to heal it, but I know time is a factor.

An eerie number of my friends have lost a parent this year. If you are one of them, give yourself a moment to be gentle with your memories. If you know someone who is going through this, take a moment to reach out or say a prayer. It means more than you know.

Yep, that’s me and my daddy.  Darcy, Dad- camping