Help for Healing

Bitter & Sweet, living daily with grief


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The Christmas Queen

This time of year, I’m known as the Christmas Queen. I hate the thought of Christmas presents, but I love the media stuff. Thanks to my OCD, I am also known more as the Christmas Nazi. That is because I HAVE to do the following every year:

Read every Christmas book I have
Listen to every Christmas record I have
Watch every Christmas movie I own
Listen to every Christmas CD I have
Play every piece of Christmas piano music I have

My friend Darren knows this about me so last year he sent me an external drive with his Christmas collection. This year I got it open and let me tell you, he makes me look like a Christmas Scrooge. He sent audio books, dozens of movies, and about 4,000 Christmas songs!

You can see why I had to start at the beginning of November. There are several things that I enjoy, but wouldn’t particularly want to visit again every year. And I’m learning lots of things, probably only interesting to me.

1- When it comes to audio books, I prefer actual readings vs. additional voices and sounds to dress it up. Patrick Stewart’s reading of A Christmas Carol is awesome, which is of course followed up by watching the movie with him as Scrooge. The exception is The Grinch. Having those fun songs throughout the reading is a definite bonus.

2- When it comes to movies, I was surprised by a few. Curious George and The Smurfs actually have repetitive worthy specials that I thought for sure were going to be on the one-time only list. Tim was particularly unhappy when he came home last week to my announcement that we needed to talk. I told him I still loved him dearly, but my heart has expanded and I am also in love with another man as well. ANDY WILLIAMS! My, what a heart-throb. He is so dang handsome and has the most beautiful eyes. (Well, so does Tim for that matter!) Tim pointed out that he is old as dirt and I pointed out he is still pretty damn handsome with his salt and pepper hair.

3- As for music, I found I am not quite as eclectic as I thought. Darren has brought my attention to all types of genres that I didn’t even know were out there. I found the B.B. King file and figured I would love him but discovered I didn’t care for his style at all. The big surprise was Big Bad Voodoo Daddy, who I had never even heard of and would have thought would have been a big no. Turns out I loved them. Lou Rawls voice is as hot as they come. And my favorite find so far, is Julie London, who I also didn’t recognize. She does a song called, “I’d Like You for Christmas” that is so sexy and sweet, I almost woke Tim up at 2 a.m. to dance with me. He said he appreciated my wisdom on not following through.

While you might think this a monumental waste of my time, I have found a way to make this useful. If Darren can put movies on a disk, then I can too. I can add to the drive and dispense of my DVDs which is consistent with my desire to keep getting rid of “stuff” in any way possible. Plus, any books on audio, I can get rid of those as well. See? It’s such a good use of my time 🙂

This was an indulgent blog about my own quirks, but a non-depressing theme is ok once in a while, isn’t it?


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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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Tired Out

I had surgery on my feet last week so I’ve been on crutches. Mostly, there isn’t much pain. The thing that has surprised me is how much I am sleeping. I can sleep for hours. As I slowly increase my activity, I find after an hour or two I need another nap. Someone pointed out that once I stopped, the last few months may have just caught up with me. I’ve been crashing hard.

My first time driving again, I went to a building complex for folks 62 and over. I have two jobs there I will be starting where I am helping the resident clean the built-up clutter in their homes. Both apartments are going to be quite a challenge. The conversations with the two women in their mid to late 70’s were amazingly similar.

“I’m tired.” Both ladies repeated that again and again. Tired with a capital T. Tired of taking care of themselves. Tired of taking care of other people, which is definitely what most women do for most of their lives. Tired of all of it.

One woman made it clear that she was not referring to “giving up” because there’s a big difference. It brought back floods of feelings and memories of Dad. I spent the last year or so trying to explain to others that exact sentiment. Dad was tired. He was done. But I saw that as completely courageous. There was no giving up, it was an acceptance. Done here. Ready for the next.

I don’t think the women I saw today were necessarily referencing the end of their lives. They are just ready for a change. Needing to simplify. Needing to stop and slow down. Wanting to be taken care of a bit which is the biggest change of all. “I’m tired.”

Later I spoke with one of the managers who asked if I had an initial assessment. I said it was too early to know for sure, but my gut feeling is that neither of them had a mental health issue of concern. They are both just tired. Tired with a capital T.

I’m aware that this week held one of those realizations that once again, God, the universe has brought my life experiences to dovetail beautifully with my work. I was able to understand and relate to them in a much deeper way more quickly than I would have a few months ago. Thanks Dad. It felt really soul-satisfying to hug one of them at the end and hear her say, “You are the only one that is listening. I could kiss you right now.”

My approach to these organizing jobs will have a slightly different slant. I will be emphasizing that peace is coming their way. They can sit in their chairs and direct me and I will do my best to give them rest. The soul kind of rest they desperately need.

My sleep has been more physical, just recovering from surgery and lots of stress. That kind of fatigue is important to respond to, but these women are tired in a much deeper, wide-reaching way. Send prayers for us as we begin our work together that the outcome will be much more significant than a clean apartment. This feels more like a ministry. I’m so glad for the opportunity!


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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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Grief Brain…Again

Once again, I find myself blaming grief brain. I know I’m a bit klutzy and spacey regardless, but when it gets ramped up, I finally remember that grief brain is a real thing. Some things will make you chuckle. If you don’t learn to laugh at yourself, you’re in real trouble. Other things make me cry, though. Perhaps people in grief should just be locked up for six months or so. For everyone’s safety…

The dreaded yearly mammogram came and went without incident this year. Well, almost. The happy part was that I didn’t have to go back several times and try not to freak out while I was waiting. I got that carnation on the first go. I took the flower, my purse, my coloring book, my pencils, and my half-drank tea and said goodbye for another year. When I came back the woman smiled and said, “I wondered where you were going.” Now I like those cute pink robes they give you, but thank God I realized I hadn’t put my clothes back on before I fully went out into the waiting room.

Disaster averted, I go to the locker room and get proper. I am again out of hands so I put the half cup of tea in my mouth. I’ve got this. Except the damn curtain wouldn’t open up. I look up to see where it is caught and that does it. Tea right down my nose. And all over my shirt. And my coloring book. I swear, it’s amazing I stay alive sometimes.

I am particularly proud of balancing two months of Dad’s checkbook. I always do it to the penny, but this time I couldn’t believe I pulled it off. I was so distraught about all the memories as I was doing it, that I kept transposing numbers and putting things in the wrong column. A few sniffles later (or a lot) I balanced it. Phew.

Yesterday I walked Taffy as usual. She’s getting old and more anxious. Right before we got back to the car she took off. She doesn’t have the energy to do it much anymore so she surprised me. When she bothered to come back, she was covered in burrs. Her tail had two massive balls the sizes of grapefruits. No, I’m not exaggerating. She just looked at me with guilty but pathetic eyes. She knew she was in pain…and in trouble.

I brushed her the best I good and a great number came off while I was in the park. Then I got home with her and sat in the driveway with the scissors. All was going painfully slowly but well until I saw the blood on the concrete. I yelled for Colin. (Sometimes I wonder what that man thinks of me. Then I realize I REALLY don’t want to know.) Best we could tell, I nicked the tip of her tail.

Now there wasn’t a LOT of blood, but it was everywhere. On the walls, the kitchen floor, the bathroom shower, wherever her tail flung around. She wasn’t crying but we were freaking out. Any mom will tell you that she would rather cut off her own hand than one of her kids. Luckily, one of my walking friends is a nurse. Thank God she answered her phone and came right over. She thought it was hilarious but she had the benefit of knowing Taffy wouldn’t bleed to death. Colin and I were not so sure.

I finally ran to the neighbors and got some cornstarch. We dipped her tail in it and the bleeding stopped. Then we just had to clean up the blood, which had dried by then. Today I finished getting the last of the burrs out with the clippers. Tomorrow she goes to the grimmer who will fix her up. I thanked Colin for not telling our Florence Nightingale about the time I cut his hair and snipped his ear. That was the last time he ever let me touch him.

Nothing terrible came of it, but I was still sick all night. My head just isn’t in the game. It hurts to miss Dad so much. It might sound weird, but I am taken aback by how much I miss him. I felt closer to Mom over the years, but Dad has become part of my tapestry in a way that I can’t describe. I’m closing with one of my favorite pictures of us. What you have to see is the smirk in his face. That nails the dynamics between us right there.

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Now I’m going to try to stay out of trouble for the rest of the day. Wish me luck.

Got any stories to share?


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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!