Help for Healing

Bitter & Sweet, living daily with grief


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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


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Is It Me???

As I continue the drama of finding Dad the care he needs/wants, I have been astounded at the majority of medical professionals we are dealing with. I say I know these things, but when I am actually interacting in reality with it vs. speaking theoretically, I can’t believe things are as backwards as they are.

While most people wouldn’t say they believe this, in practice they betray they do. I am realizing that even medical peeps hold to the idea that every person wants to live as long as possible. If they don’t, then there is a mental illness (like severe depression) or they are “not of sound mind.”

Dad has literally been badgered repeatedly even though he has been crystal clear and actually has it in writing on every kind of medical and legal form possible.

Are you sure you don’t want an antibiotic?

Do you understand you may die from infection without an antibiotic?

Over and over and over again. This week’s appointment resorted to actual bullying and attempted manipulation. Dad stood his ground and I eventually exploded at them. The doc responded with:

“This is not medical care in America. American medical care does not work like this.”

I know palliative care is relatively new outside of hospice, but I can’t believe he was serious. He is even young. Uneducated, uninformed and therefore treating patients unethically.

Caring for a loved one with a debilitating disease, eventually losing them, etc. is so unbelievably exhausting and heartbreaking. But dealing with this nonsense repeatedly is beyond maddening. I literally shake with anger and frustration. No idea how to fix the mountain of an issue. How can we change facilities when the doctors don’t get it? And how do we change doctors when they are trained to believe death is failure?

Systemic issues aside, I have my father to care for. Please keep him and my exhausted family in your prayers as we attempt to navigate an incredibly complicated set of diagnoses with treatment options that are Catch-22’s at best, in a system that is utterly broken and unsupportive. What a sentence that was.

One moving, profound (to me) bright spot. Frankie turned 16 this week and asked me a ton of questions to try to understand what is happening with his grandfather. He absorbed the horrible information and asked for clarification that indicated that he indeed understands the depth of the problems and their significance.

He asked if Grace, his and my doctor, would be able to help Grandpa. I said that she is an excellent doctor and would respect his wishes but is unable to take on any new clients. He thought for a moment and said, “Mom, why don’t you and I give her up so she has room for him?”

I cried later in my room. I love that kid. He tries to pretend he’s selfish and uncaring because he’s a teenager. He’s not fooling me. He has an amazing heart.

Give yourself some time to think about these issues for yourself.


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I WANNA SCREAM!!

Sigh.

Heavy sigh.

Another heavy sigh.

My poor dad.  Our medical system stinks and he suffers for it. Being on palliative care is supposed to make his life more comfortable. In order for that to happen, you must have a palliative doctor, or one that at least fully understands what it means. I have literally spent weeks trying to find him one. Guess why I couldn’t find one? Because there aren’t any.

Geriatrics continues to be an under-served field of profession. People don’t come out of school wanted to work in geriatrics. Palliative isn’t exactly the same thing, but you can see why they are closely related. In all of western New York, there isn’t a palliative doctor unless you are admitted to Hospice.

Having nothing to lose, I contacted Hospice. After phone interviews with me and my dad, I get the call back. No go. He isn’t qualified. His Parkinson’s has to be much further along. It’s a horrific disease that unfortunately waits a really, really long time before it kills  you. It just makes you suffer, sometimes for decades, with no hope of getting better. It just gets worse and slowly robs you of any control whatsoever. I listened to the nurse tell me what late Parkinson’s will look like down the road. It sickened me. I cried for a long time after I hung up.

He has had a backache and needs a pain pill. How simple is that? I’ve been running in a Catch-22 circle for four business days, hitting my head on the wall. Can’t get a prescription without making an appointment. I know that is SUPPOSED to be about practicing good medicine. My cynical (but unfortunately realistic) self knows it is more about getting more money from the office visit. What do they need to see? He’s an 86-year-old man with Parkinson’s who is on palliative care. He is supposed to be kept comfortable. Give the man a damn script. I can’t get him into a good doctor for another three weeks. So his three days of pain may turn into three weeks. Of course we can see another doctor in one week, but neither Dad or I care for him. He definitely does not have a palliative medical mind. He either goes to a doctor he doesn’t want (and still waits another week) or waits three weeks.

What pushed me over the edge was the Parkinson’s doctor. She could have prescribed something, at least to get him through a couple of weeks until he sees his primary. The answer came back, “I don’t treat backs, just Parkinson’s. He needs to see his primary.” I told the nurse about the week I have had. Can someone out there please be humane and give an old man some relief?

She said it’s not about being humane but there is all this controversy about pain meds now. Blah Blah. I know, but an 86-year-old man with a degenerative disease is not the person they need to worry about. It’s all so ridiculous.

All of this time, energy and emotional turmoil for me, and all the physical and emotional turmoil for him over a pain pill. There is another even more ridiculous saga over getting him physical therapy. I don’t even have the motivation to write about that too.

I’m an Aging Care Manager. I am supposed to help people “navigate our complicated medical system.” I can’t even help my dad. So frustrated.

Feel free to share any stories you might have. And if I am missing some loophole, for God’s sake please tell me ASAP.


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Guest Blogger

It’s been a while since we’ve had a guest blogger.  Jennifer Scott has written the informative article below. I apologize that her pictures did not translate over!  Her website is http://spiritfinder.org/ if you would like to know more. Thanks so much Ms. Scott!

Improve Your Overall Health While In Addiction Recovery

It was a long road, but you made it. After years of substance abuse and suffering from addiction, you managed to get clean and formally enter addiction recovery. This is a great time for you, but it’s not going to be easy. Although you’re strong enough to beat addiction, that doesn’t mean you can’t use some extra help to make this journey easier.

One of the best ways you can help yourself through the recovery process is by improving your overall wellness. But what does that even mean?

Being Healthy Supports Addiction Recovery

The University of California Riverside lists seven dimensions of wellness as a way of defining wellness:

  1. Social: Having friends and family to socialize with.
  2. Emotional: Cope with stress and challenges.
  3. Spiritual: Having peace and harmony.
  4. Environmental: Living safely.
  5. Occupational: Having a good paying and fulfilling job.
  6. Intellectual: Learning and challenging yourself mentally.
  7. Physical: Being physically fit and well.

These elements are imperative if you want to be successful in your addiction recovery journey.

As samhsa.gov explains, wellness and health are particularly important for people struggling with a disorder or addiction. Chances are, your body and mind were hurt by the addiction, so your chances of addiction recovery go up when your wellness improves.

What You Can Do To Stay Healthy

Wellness is important to you, but how can you improve it? It starts by knowing yourself. You need to understand what helps you socially, emotionally, intellectually, and so on. For example, what type of social activities do you love? Extroverts might love big parties, while introverts prefer small gatherings. As you explore your options, write down what works for you.

Then turn that list into a checklist that you can regularly review. Think of it as a road map to your overall wellness, or at least reminders of what you should be doing. Addictions And Recovery has a great example of a checklist you can use to monitor yourself. It includes items like:

  • Call your friends or family when you have problems.
  • Keep eating healthy and work on getting enough sleep each night.
  • Avoid the “friends” who helped you get addicted in the first place.
  • Engage in hobbies that promote wellness.

You also need to keep track of how you are doing week to week. Here is a great self-evaluation checklist to monitor your progress. By checking in with yourself each week, you can catch any slips before things get out of hand., but you can also see how successful you are, thus boosting your confidence and self-esteem.

Holistic Therapies That Work

As you continue to develop individual strategies to promote your overall wellness, you should also look into holistic therapies. This is not some kind of New Age medicine! Instead, these are treatments that work on your overall wellness — and they can help with your addiction recovery.

The Treehouse explains that holistic therapies can play a vital role in regaining your previous life. Although everyone should have their own personalized plan, here examples of holistic treatments that can help:

  • Acupuncture
  • Meditation or prayer
  • Biofeedback
  • Yoga
  • Herbal therapy

Even just getting some regular exercise can help you get through addiction recovery more smoothly.

Your Overall Wellness Matters

Addiction takes a toll on your mind and body. Although you’ve beaten it for now, addiction recovery is still a tough road to travel. That’s why you need to look to your overall wellness. Examine your life through the seven dimensions and find ways to support those that work for you. Keep a checklist handy, and find a holistic therapy that interests you. And remember, taking care of your wellness is a vital part of your addiction recovery.