Help for Healing

Bitter & Sweet, living daily with grief


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Dying in America

I have been reading this mammoth 506 page document referenced at the end of the blog. I admit some of it I read and get the general gist but I couldn’t parrot back the details.

Other times, I feel like I am reading the biography of my father. All of the death experiences I have had with loved ones as well as my own dealings with the medical system certainly resonate too.

It’s strange because I’ve built my business, lectures, etc. around my hard-learned life experiences. I’ve probably said a thousand times that our medical system is broken and I would have no idea how to fix it. Now, reading this work that was published in 2015, it is all there in black and white. I understand slightly better WHY it is broken. I understand a teensy bit HOW it might be fixed.

But mostly, even though it is incredibly validating to read that I actually do know what I am talking about, it is beyond maddening that this stuff is real. It is so lacking in common sense, it is incomprehensible things are allowed to exist the way they are.

Reading on the Kindle platform, I am able to highlight things as I go. I am also able to add “notes” that store in the relevant sections of information. I am like a broken record in my notes when I start with, “This is the like the time with Dad when…”.

There is a plethora of research to back up the usefulness and credibility of end-of-life care. Yet the statistics keep bearing out that most folks don’t die the way they wished. And those that get palliative care only get it briefly at the very end of their lives. Getting it months sooner would be ridiculously more beneficial to the patient and their families. And the big whammy? That actually costs much LESS money.

I have had so many clients and close friends lose people dear to them. Even though they know what I do, most people think they understand what is happening and what their rights are. I hear the horror stories afterward and I want to scream out loud. It didn’t have to be that way!

Yet this will continue, probably throughout the rest of my life on earth. My business won’t make it and my heart will keep breaking because folks (medical and lay) don’t understand death, and don’t understand there are other ways to let things happen than the way they normally fall out. In part, because we still just don’t want to talk about it or deal with it. And we definitely don’t want to feel like we have failed our loved ones in any way.

Even recently when I was at the statewide palliative conference, as I told my story those folks were saying things like, “How did you even know to call the Department of Health?” It makes me sick to think of how many people, every single day, are bullied into choices not in their best interest. And worse yet, they don’t even know they were bullied.

I just took a deep, deep breath as I was writing this. I guess I am equally as crazy, because even though I know all of this, I am going to keep going. I will keep trying and fighting and learning and reading. I’m not even sure why, I just know my passion for this doesn’t seem to be dying.

Pun intended.

Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. https://doi.org/10.17226/18748.


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He WAS there!

It’s funny how sometimes the “facts” of your life can change as your perspective and experience grows. Maybe a little growing up too. I remember when I was initially immersed in therapy in my 20’s and I was doing the whole evaluating my family of origin thing. Mom and I were in a lot of conflict at the time. I had this “aha” moment when I realized that I disagreed with her a lot, but it was because she was “there.” Dad just wasn’t. At least that is how it felt at the time.

I’ve mentioned before that Dad was a good, stoic German. He was not very demonstrative with his emotions or affection. It made him uncomfortable. That’s why there are lots of pictures of me sitting on his lap or my sister and I kissing him when we were older because we just kind of forced it on him (lovingly). You see his smile though, he liked it!

Progressive-Lisa, Dad, Darcy

But I was laying in bed the other night and one memory after another popped into my mind. I am rewriting my story. Dad WAS there.

The first time that comes to mind, I’m not really sure how old I was. Maybe five or six? Dad played softball at the fire hall. I think he was the pitcher. I was sitting on a blanket on the sidelines. Don’t know what family I was with but it wasn’t my family. All of a sudden I got hit hard in the head with a baseball. I was dazed. My vision was blurry but I looked and saw Dad running to me. He was there. I remember being home that night with ice on my face and Mom saying, “Poor baby.” But Dad came running, literally, when I needed him.

Next, fast forward to fourth grade. My grandma died. She and I shared a bedroom so I was very close to her. We had this ugly, brown, upholstered rocking chair, but we had it for years and years. I remember being curled up in Daddy’s lap in that chair and just crying. He didn’t say anything, just held me. He was there.

Right after I graduated high school I went on a mission trip to Europe for six weeks. I was in the driveway saying goodbye to mom and dad and we were hugging. I remember looking up and being shocked to see Dad crying. I mean tears, streaming down his face. He didn’t say a word but he didn’t have to.

In 1990, we had a huge tragedy in our family. My niece was killed in a car accident at only 10 years old. Dad was directing traffic as a firefighter and had no idea who was in the car. That tore him up. I remember him talking about it. And I remember our family going to the private viewing at the funeral home before everyone else arrived from the public. I am pretty sure it was him that stood next to me with his arm around me as we all sobbed.

In 2010, Tim was diagnosed with cancer. Our cat was too. Oreo was put on steroids and had another month where he functioned normally. Then the day came when he couldn’t walk and we knew what had to happen. Of course, the irony of knowing what lay ahead for Tim didn’t escape any of us. We were all in the bathroom as that was where we found Oreo unable to walk. It was Tim, David, Dad and me. All four of us cried. Dad was right there with us. No words were necessary.

I will never forget October 14, 2010 as long as I live. After his five month battle with cancer, Tim died at the Hospice facility. The room was full of loved ones, but it was Dad that stood next to me as the nurse examined him and looked up at us to tell us he was gone. Crazy thing about a terminal illness. You know the end is coming. You wait for it. You plan for it. But when it happens, you are shocked anyway. My knees literally buckled underneath me. Dad caught me. He literally held me up because my body wasn’t capable of it.

My story is rewritten. I had two amazing parents. As we all kept vigil as Dad was living out his last two weeks, my boyfriend Tim carved out some time alone with Dad. He told him that I wouldn’t be alone anymore. He promised to take care of me. He promised to take care of David. Even though he wouldn’t articulate it to me, I know that helped Dad to let go more peacefully.

As I had foot surgery this week and have had to sit still (which is almost impossible for me), Tim has kept his word. He has held me up, literally and figuratively. I remember him telling me that he knew he would never replace Dad, but he would do his best to be there for me.

Thank you, Dad. Thank you, Tim. And thank you God for all of them.

Graduation June 22, 1985 (3).jpg


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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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The Usual

I’ve been staring at my screen for a while now. I’m trying to think of something creative or clever. Funny is my favorite. I know this blog was started around grief and loss, but I try to mix it up.

But alas, it has been more of the same. The universe hasn’t shifted much this week. People are still being born. People are still dying. No one has learned to live forever. It’s the usual cycle of life and death.

Yet, I know for those folks that have been touched personally, their lives are anything but usual. Their worlds have been turned upside down. They are either slowed in a fog or frantically keeping busy every moment of the day handling “stuff” which also serves to shield them from the full impact of loss.

My neighbor from where I grew up died recently, much too young. There was a benefit for her just days before her passing. A terminal illness battle.

A dear friend lost her father. He was the same age as my dad, also a Korean vet. His story reminded me of my mom. Three fast, confusing weeks of illness with little or no answers and suddenly you have lost a parent. Devastating.

My current neighbor lost her mom. I read her texts as things developed and my heart ached for her as she waited, unable to do anything but accept the inevitable outcome.

This weekend my family will attend a memorial service for Mom’s twin, a woman who was at one time so very close to our hearts she was like a second mom.

So the statistically normal thing will just keep happening. But I know that for many, many families, “normal” will be changed forever. My heart hurts for all of you and I offer my love and friendship if wanted or needed as you go through the painful days ahead. If you know someone enduring a loss, take the time to make a call, send a card, or offer a hug. It will mean more than you know.


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Endings

If you want to read the precursor to this story, check out “Shut Out.” The end of the story is not a good one and I wish I could say it isn’t so.

One of the days that Ed had texted and asked me to visit him and his daughters asked me not to come, I reached out to someone at Roswell that I had met who worked with “family engagement.” While I wasn’t sure what that is exactly, I wondered if my situation would fit in. I forgot that I called him, but a few days later he got back to me.

I told him that I had decided not to go to the hospital, but I said I would be interested in knowing what his opinion on the situation would have been. He went around a few times, but actually called me back later and said that the bottom line is really about the patient’s wishes being respected. While we both understood that accepting death is difficult and some families just refuse to go there, it wasn’t about that. It was about Ed. He suggested that he talk directly to him and find out what his wishes were. If he indeed wanted me to visit, then perhaps the social work department could get involved to help the family shift their thinking about how best to support their father.

I cautioned him by reminding him that the family believes they are doing the right thing for him so this would be an extremely delicate situation. It would have to be handled ever so carefully. He agreed and said he would get back to me.

He didn’t. Instead, I got a scathing text from one of the daughters that was addressed to me, and copied to the other siblings. It spoke of how disappointed she was when a social worker approached her because her dad’s counselor and called to complain that his family was keeping her from seeing him. She told the worker that I was not his counselor, etc.. She also went on to talk about my creating nonsense at a time when they are focusing on his well-being.

I was stunned. And angry. I texted them all and said that it was not true and that I had their father’s well-being in mind at all times. I told them I would like to sit down and talk with them and straighten things out because it’s much too important to text about.

I never heard from any of them again. I texted. I called. I left messages. I texted and called Ed but never got responses. I didn’t know if his phone was being monitored or if his family had told them I lied to the hospital and they all hated me.

I thought and thought about how to let him know I cared. I have several cards he’s sent me over the last few years where he called me his best friend. I would dare say I might have been his only friend. This was horrible. I decided to send a card to the hospital.

Only he wasn’t there anymore. I started looking for him in various rehabs that we had talked about as possibilities for him to go to. I peppered the search in between the calls to him and his daughters.

This weekend I found out the truth. I found his obituary. He was gone. And his wake and funeral were over as well. I reached out again to the family to ask where he was buried. No response.

To say I was devastated doesn’t really describe it. It was such a complex ball of emotions. Of course there is the loss of a very, very dear friend. There was shock that this family despised me this much that they wouldn’t even let me know about the wake. I know in my heart I absolutely did not one tiny thing wrong to deserve their hatred. Not one. And now I’m also experiencing a great deal of anger. I’ve had boatloads of loss in my life and I absolutely did not need to have a loss that was the result of a bad ending.

And then there is the anger at myself. Because I have been so depressed lately, I chose not to go to the hospital because I just didn’t have the strength it would have taken to stand up to the family and honor his wishes. If I wasn’t so depressed, I would have taken my strong patient-advocate self. But instead, a wonderful man asked me to come and he died thinking I ignored him.

I have always said beginnings and endings are crucial in life. You can’t have one without the other either. I was thinking about how sometimes people behave badly and then at the end of their life, they make peace or say they are sorry. The ending changes everything. Maybe it shouldn’t, but there has been lots of forgiveness that happens at the end. And I say hurray for that.

I realized that I assumed the reverse is true. If the ending is bad, it negates any good that happens before that. Darren reminded me that is not the case. He said the months and years before this ending, I was a good friend to Ed, and he was a good friend to me. Good enough for him to call me his best friend. The ending was only a small space in comparison. When he was lonely and sad when his wife was in the nursing home and then eventually died, that is when I was there for him. I mattered to him.

Thank you, Darren. You are so right. The reverse is absolutely not true. While the ending was sad and unfair, his daughters can’t take away the years of our friendship. All of the walks, talks, hugs, fires, and pool parties meant something. I love you, my dear friend. I am just sorry I wasn’t able to tell you one more time.


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At 50?

I can’t believe at age 50 I feel like I’m back to square one. I know I’m not alone in this. Who would have ever believed that the big questions like career and partners would still be up in the air and a struggle when your life is more than half over?

I did a presentation this week about two hours away. A whole group of us participated in a death/dying conference like the ones we had done in Buffalo. It went great. Almost every speaker was dynamite and the audience seemed receptive and even enthusiastic.

I was the last speaker of the day which was tough because I knew everyone was tired. It went over extremely well though and I knew I had reached people by the feedback. The problem was, I didn’t make a penny.

So frustrating. I know I possess a good skill set. I can speak and I can write. I can do them both very well. The other panelists all came from companies or hospitals they represent. They are getting “paid” because it is part of their salary. I’m the only lone ranger in that sense so if there isn’t a speaking stipend (which 90% of the time there is not) then I can only hope I sell books.

I didn’t sell one book. I watched the woman next to me sell about 10 books. Same topic, different angle. Both of us good speakers. WTF?

This is not new. This is the scenario 99% of the time. I am well past the point of being able to write/speak simply because it is helpful to others. My heart is there, but my pocketbook is not. I am the sole breadwinner in my house. I have a family to provide for. And my social security is being cut in half in less than a year. Holy crap that is scary.

I’m going to have to reinvent my career and I have no idea what to do. Well, actually I have tons of ideas, but knowing which path to follow is confusing at best. Add coping with severe depression on almost a daily basis now, and it is beyond overwhelming.

What do I want to be when I grow up?

I thought that was settled years ago. I even had a brave moment this week and attempted to go on a date. I got stood up. I know it isn’t personal because we hadn’t even met yet, but cripes. Stick your toe back in and find out the water is frigid.

That’s was scary about being so depressed. You have to take risks in life and be proactive if you want to meet your goals. But if you are already down and out, you can’t afford to fail. At anything. What a freaking catch-22.

For the moment then, I will just stay stuck. Not sure what the heck to do with myself. I know I can’t stay this way, but I’m terrified to do anything else, with any of these areas of my life.

Maybe 80 is the new 50. Maybe I just have to wait another 30 years and things will fall into place. One can only hope :).


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Shut Out

I am presenting next week as part of a large panel and am going to attempt to integrate Power Point for the first time. I know, I’m behind the times.  They are very simple slides, but I’m long past due for getting a more polished look for my lectures. Same topic as usual. Why is it important to confront the uncomfortable concept of death and dying?This presentation is going to be a little different in that besides talking about my experience with Tim, I am also going to talk about a current situation.

I met a very, very dear friend after Tim died, who has become in some ways like a second father. He’s just a couple of years younger than Dad and bears some physical resemblance to him as well.  He has actually met my dad a few times. He has been in the hospital the last several weeks. I have visited when I can, but recently the family has requested no visitors outside of family. I certainly would not ever want to offend the family, especially in such a stressful situation. The problem is, what is the family wants something different than the patient.

My friend had reached out to me and said he wanted me to visit. I even double checked to make sure I understood correctly. That is quite a dilemma. Why would the family not want me to visit? I don’t know, but I can attempt to make an educated guess.

Things can sound quite sensible in theory when you are talking about them outside of your personal experience, or especially outside of an actual acute situation. When you choose a health proxy, for example, many people think the appropriate person would be the person you are closest to. Actually, much more important than that, the proxy should be the person who is most likely to honor your wishes. Sometimes what we want for our loved ones is not what the actual patient wants. When the time comes, you might find it difficult to do what your loved one wants if it is different from your own desires. If you are emotionally in deep, doing the “right” thing (in this case what the patient wants) can become very cloudy.

My often mentioned friend Darren articulated something that really struck me. We were talking about this situation and in general about how I often am trying to do the right thing and somehow end up “being the bad guy.” He said it is because I bring light to the dark corners of the room that haven’t been swept out yet, because I’m not afraid to go to the difficult places. I loved that. Not sure I deserve that much credit, but it felt really great to hear.

One time when I was visiting my friend, he started to open up to me about what I loved “end of life stuff” such as how his illness was affecting his family. Then there is the big question of why is this even happening? That is the one I always say I don’t think there is an answer to. Why do we die? Because humans don’t live forever. We all have to die at some point. Every one of us. Because there are cancer cells we can’t control. Because there is disease, violence. Because people make bad decisions sometimes. But sometimes it is just because we are mortal.

I did my best to work through the labyrinth with my dear friend. In the background, one of his family members was bustling around saying things like, “Don’t worry. This is just a bump in the road,” or “You will be back to normal in no time.”

I cringed. He has stage IV cancer and there are no treatment options left. No, this is more than a bump in the road. This is nearing the end of the road. No, he will not be back to his old self.

I think he must know deep down. I think that is why he wants to talk to me. I can handle the conversation. I wonder if deep down he understands he can’t really talk to his family member. But now it feels like I’ve been shut out.

I don’t know how it will play out. At this point, he has changed his mind about visitors. Was he told that I am acting crazy? Or is he just not up to company? All I know is that at one point he specifically asked me to come and I couldn’t go. Well, I could have but I would have greatly upset the family. That is certainly not my goal.

It’s all heart breaking. I dream about him and I keep thinking if I don’t get a chance to see him again, I am at least relating to him on that level. I just don’t want him to think I have abandoned him in this very fragile time of his life. He has given me hugs and hand holding many, many times when I’ve been down and out.

Keep him in your prayers, and the family as they grapple with accepting the upcoming loss of such a wonderful human being.