Help for Healing

Bitter & Sweet, living daily with grief


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2011

I’ve heard that sometimes silence is deafening.

I have been working for several weeks now on a project that I proudly finished today. My 14,778 photographs are in a photo program that keeps them organized in a way most people would envy. However, my OCD has not let me rest for years because the way those photos are stored was not consistent.

Now who would even care about something like that? It finally got the best of me and I started the maze of trying to swap this for that. Eventually, I contacted my peep in CA from Adobe who told me a much, much, much easier way to accomplish what I wanted. Unfortunately, I had already completed about a third of the collections but at least the rest of the project went more quickly.

It was interesting to walk down nostalgia road. Back in the days of film, photos were much more difficult to date and record. You know how it was. You had a roll of film for a decade or so and then you finally got it developed. If you were lucky, you could remember what you photographed.

I couldn’t help but do that grief thing with dates. Before and after kinds of things. Oh, before Mom died. Oh, after Tim died. They become non-erasable markers in our heads that leave a scar.

Without even meaning to, I looked at those photos and wondered things like, “Wow. That was Mom’s last Christmas but we didn’t know it then.” And all the years that we were careful with Dad around holidays because we learned from Mom that you never knew when it could be your last.

The part that I wasn’t expecting, was when I would get to a collection and realize that suddenly, the photos would drop off. After about the third or fourth time it happened, I realized the pattern. It was 2011. There just were hardly any photographs at all that year. For anyone, it seemed.

In 2010, Tim got his diagnosis. There was our last Father’s Day together. There was his benefit. But in so many sections, 2011 was just gone.

It was a reminder that my entire family and support system grieved right along with Tim’s wife and children. Where did that year go? What happened to us? We must have been swallowed up in grief. Perhaps nothing felt important enough to want to remember. Yes, there were some pictures, but the difference in amounts of photographs between years was startling.

It makes sense. But it was yet another reminder that grief and loss change us in ways that we aren’t even aware of. The aware parts are tough enough, but sometimes the other insights can take years to see. I’m sure decades too, I just haven’t gotten that far yet.

I guess the take-away is this. If you are in acute grief right now and feel like there will never, ever be a smile in your life again, please know that it won’t stay like that forever. It hurts like hell, but the intensity does not stay the same. Thank God.


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Grief Nudges

I’m no stranger to grief, but I still get caught off guard when a wave hits me unexpectedly. I should expect the unexpected, but then that’s an oxymoron, isn’t it?

Just a couple of those moments this week. When they are wrapped in positive things, I am reminded of the bittersweet nature of life. Where you find the sweet, there is also bitter and vice versa.

I have been in meeting after meeting via the phone and computer this week. (It’s a good thing they are scheduled that way because I have been snowed in!) I am thrilled to part of a statewide group that is seeking to make medical changes for the better. It’s intimidating to be chatting with some of the state’s top dogs in the field, but I’m honored.

After one such meeting where I had to briefly describe what happened with Dad, I hung up and went to find Tim. Before I knew it, I was crying again about feeling like I let Dad down because I couldn’t get people to do what they were supposed to do. He was his usual awesome self. I do know deep down that other people’s behavior is not my fault, but I just hate how everything went down for him when he deserved the best ending a person could have.

A couple of days later, Tim and I were at his trailer packing things up and preparing it for going on the market. That’s a positive, exciting step for us. We got to the recliner in the living room which Tim inherited after Dad died. It took less than five seconds for me to start crying. Dad spent most of his time in that chair. It was his favorite spot. Again, Tim spoke up first. That chair isn’t getting sold or donated, it is going in the cabin we are hoping to build soon. I felt much better after that.

Bottom line, I miss my dad. A lot. So there are going to be reminders, everywhere. Expected and unexpected. It’s all part of the grief process.


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Why Do I Bother?

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

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

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

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

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

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

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

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

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

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

And now this.

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

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

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


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Blue Thanksgiving?

This week I was cleaning out my closet to continue my efforts to purge and minimize where possible. It brought me to my two memory boxes of Tim. Every once in a while as I go through them, time passes and I notice that some things that seemed important to keep at first, don’t seem that important later. I think that is a natural part of the passing of time.

This time, I found myself looking with the perspective of having tried to become as paper-free as possible over the last year. This led to a boatload of scanning. I had over 80 scans by the time I was done, the largest one being 25 pages. (Thanks Stef for showing me how to top-load documents!)

Overall, as the days passed, I knew I was melancholy and sober. It wasn’t just reliving my husband’s death, it was reliving the loss of my church family as well. But the deepest wound by far, was finding one of Tim’s treasures he had saved. He had a couple of Christmas tags in Mom’s handwriting that said, “To Tim, From Mom and Dad.” A wave came over me as I said in a whisper, “My God, all three of them are gone, completely gone.”

Today I had to go to the Hospice campus for something. They have done lots of remodeling. Their already nice facility is even more beautiful and more convenience-friendly. But I didn’t even make it back to my car without calling Michelle back and dumping a whole bunch of tears on her.

She asked how I am overall. Lost. I feel lost and orphaned. Both parents gone, a spouse gone. Geeze, I know lots of people are in the same boat, but I’m super in touch with my own grief right now. It’s mine, and it’s intense. Why does this stuff always happen around the holidays? That familiar stomach ache. That familiar hollow feeling I know so well. Only it is carved even deeper now. That feeling like this death aged me another ten years ahead of my time. 

I laugh when I job hunt and I hear dumb things like I don’t have experience with some of this stuff. The hell I don’t. I have gobs of it. Not as much as some, but more than a lot of people. I’m not feeling a pity-party at the moment. Just letting folks out there know that if you are in grief, don’t let anyone tell you there is a time limit to it. You’re allowed the rest of your life. It’s okay if the holidays are bittersweet at best. That about sums up life in general anyhow. Let yourself show the courage to taste both ends of the spectrum.

It can still be a Happy Thanksgiving, even when you’re shedding some tears.


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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.”