Help for Healing

Bitter & Sweet, living daily with grief


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When end-of-life care magnifies the pain

I’m cheating this week. I am going to post an article in the Buffalo News that I wrote and was published yesterday. I love the title the paper came up with. Care is supposed to diminish the pain, such irony. The response to the article has been amazing. I have gotten emails from people telling their own stories, asking for assistance in guiding their journeys with their loved ones. I am especially excited about one from a geriatric doctor who I will be meeting with to discuss how to attempt to make positive changes in the system. I think it’s worth posting it here for those who aren’t local or don’t read the paper. Please feel free to share your own stories and experiences!

“After losing Mom and my husband, writing books about it, and becoming credentialed as an Aging Life Care Manager, I assumed approaching Dad’s death was going to be the best death I had the privilege to be part of. I know that sounds strange, but I had become educated and knew when Dad switched to palliative care, when his time came, he would not suffer. I promised him that.

I had absolutely no idea what I was talking about.

Over the last decade, I became increasingly involved in his care. He had Parkinson’s and we began the journey of educating ourselves the hard way. After treating swallowing issues and bladder disorders for years, we were finally informed they were symptoms of Parkinson’s. Itchy skin. Blood pressure. Is there anything this thing doesn’t touch? It’s a slow progressing disease that makes life miserable but doesn’t have the courtesy of actually killing you. At least not for years and years.

My family and I helped him “get his affairs in order” over time. He slowly made changes financially and legally to put him in a good position. He sold his house and eventually landed in Assisted Living, just down the street. While it seemed crazy expensive, finding out about a VA benefit made it almost affordable. He would have three meals a day, have his apartment cleaned, and his laundry washed.

We made sure his medical papers were ready. We had lots of discussions about his wishes so I could be a good Health Care Proxy if need be. By the time he turned 85, he had lived a good life and was ready for the next and a reunion with his wife.

In July, Dad starting experiencing pain. Spoiler alert: Two of the last three weeks of his life he lived with increasing pain. I knew our medical system was broken, I just didn’t realize how badly. Medicine has become a for-profit business, which usually means money is more important than patient care. No matter how much I advocated, I couldn’t beat the facility or the medical persons they contracted with. It became crystal clear they didn’t understand palliative care or that palliative and hospice were no longer interchangeable. More importantly, they didn’t want to. Professionals should inform patients of treatment options and expected outcomes. The decision to treat (or not) should be the patient’s, not the doctor’s.

I could not get the administrators to see what was happening. The staff would often shudder at what they witnessed but were powerless. His primary would not prescribe enough pain medication and refused to order a catheter in spite of his fall risks. There was blatant refusal to accept his MOLST (Medical Orders for Life Sustaining Treatment). It finally culminated in them blocking Hospice from treating him. Yes, you read that right. Eventually they were cited by the Department of Health for failure to comply or I can’t imagine how bad Dad’s suffering would have gotten.

I later discovered that about four years ago, regulations were drastically changed. Dying is not enough to gain Hospice care. You have to have a terminal illness to qualify. How do I keep heralding the advantages of palliative care if there is no one to help folks when they get to that point? Hospice can’t be happy about this either.

I will never, ever forget the look in Dad’s eyes when he was hurting and I could do nothing for him. The several individuals who refused to do proper research and care for him appropriately should not be practicing. You only get to die once. Why should a decorated Korean War veteran, after working his entire life in an American factory, and was a volunteer firefighter for 60 years, have to suffer at the end of his life? If you can answer that, please tell me. I would do anything to make sense of it.”


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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.

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Put Your Money Where Your Mouth Is

I have been lecturing on death/dying/end of life planning for four years now. As my dad has been going through medical issues, I find myself on the other end of that conversation. I hear doctors and nurses say things almost verbatim to the things I have said myself many times over. But it has been a good wake-up lesson for me to have it be so personal again. It’s been a while since the information has been so relevant and in my face.

A few weeks ago when Dad was in the hospital, we had to make some decisions. I have been anticipating this moment for at least a year, maybe longer. Yet somehow, I felt shock, blind-sided, unprepared. It was strongly reminiscent of what I felt when Tim passed. I had been at his side for months, thinking I was ready for the moment when he would go. But when they announced his death, I felt my knees literally buckle underneath me. I was shocked. How was that possible? Yet it was the definite reality I lived.

Dad made a decision to go palliative a few weeks ago. It totally makes sense. It’s a rational, reasonable decision. He has Parkinson’s, a degenerative disease that only gets worse. There is no getting better. After seven hospitalizations in 14 months, there will be no more tests, procedures, labs, hospitals, etc.. The decision was made through a very teary-eyed conversation between myself, my sister, and the nurse practitioner. She did an excellent job, just like I would have done in that position. She told us that Dad had spared us making tough decisions but clearly making his wishes known in his MOLST form. It was end of life planning working exactly the way it was supposed to.

Then why the hell is it so hard?

Now don’t get me wrong. Dad does not appear to be in the active stages of dying. But he is ready to when the time comes and wants quality of life until then. He could be around for a long time, no one knows.

My sister and I took him to see his dermatologist yesterday. We updated her on what has been happening. When we were ready to leave, she cried. She apologized if she was upsetting us but I told her it always feels good to know other people love Dad too.  He has a great team of doctors that have taken years to gather together.

Again, my point is just this. While I talk about this “stuff” quite frequently, it is still hard to face when it isn’t just concepts we are talking about, but someone I love dearly. It renews my passion again to help people think about these concepts before they are in the middle of crisis. It’s hard enough to do with preparation! I’m starting the process of figuring out my next career move but I know it is going to have something to do with helping people on this journey.


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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.


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Women

Admittedly, I am more of a glass half-empty person that I am a half-full. I think most people err on one side or the other. If you’ve ever been to one of my lectures, you know my philosophy is that the key to healthy living is to balance both truths.

I have a few half-full folks in my life. They enjoy my blogs and Facebook quotes that are more upbeat and positive. The thing is, I’m a professional writer whose specialty is the topic of death/dying and grief/loss. In my practice, my specialty is relationship counseling, but you can’t talk about any of that without a healthy amount of focus on grief/loss. So my half-full friends, you will just have to be patient with my emphasis on being in touch with the pain in people’s’ lives. It happens to be what I am good at.

Sometimes there is so much happening around me, it’s hard to decide what to write about. (As opposed to those weeks when my mind is blank.) Last week I wrote about some great men. This week I”m going to focus on a couple of women that I know that have amazing strength.

My readers are already familiar with Summer. She was a rock for me while Tim was dying. She is a pillar in her church family and the community she lives in. It makes it hard to be her BFF sometimes because often we only get brief moments to chat every so often. That’s the life of someone who so many people depend upon. The year 2016 has been fraught with challenges for Summer that I can’t even begin to enumerate. I mean it’s stuff that tops the stress chart scales. Day after day after day. The last week she has been working with the hospice team to help usher her 93-year-old father-in-law to his final home. It brings memories of Tim flooding back. Listening to her exhaustion from the roller coaster of that daunting task is about all I can offer her. Her “dad-in-law” is one lucky man to end his life with the dignity that Summer and her family are gifting him with.

The second woman who has recently touched me is Ray. She is only 33-years-old, but I think her soul is much older and wiser. She is one of my students. We still chuckle when we talk about how we first met. She was being a bit overly assertive and feisty along with some of her peers. Our first class together started with my own assertion of myself as the graduate college professor- i.e. I was the one who called the shots, not the students. We laugh because we all have grown to deeply respect each other (and very quickly!) that it’s hard to imagine we had a rocky start.

Ray is a cancer survivor. I don’t know what the details are, but I know that she walked into my classroom already having learned so much about life, that some will never accomplish at twice her age. Ray was just told the cancer is back. Yep, cancer is such a beast. An unfair, vicious monster. This time, it is in her spine. It requires surgery, affording her a whopping 50-50 shot at walking again. Oh, by the way, Ray, did we mention we also discovered that you have MS?

We decided that we couldn’t possibly have our last class as scheduled, because it is the same day as Ray’s surgery. It just wouldn’t feel right. And it isn’t exactly appropriate for us to have class in the hospital. We all adore her, but I’m sure her family would like to take up the space around her. We are having our last get together at my house tomorrow night around a campfire. They are all of age so I told them they could bring their beverage of choice. And we are all praying Ray is feeling up to attending.

My first cohort of students I had for one semester. I still keep in touch with one student on occasion, and another student I talk to regularly, even after her move to North Carolina. This group of students I’ve had for an entire year. I feel the weight of grief and loss already. I try to give them my heart and soul and they fill me up with their appreciation. I’m sure we will stay in touch, but let’s face it. Things are never quite the same.

But I’m never away from the thought that the weight I carry from knowing I will miss the amazing women I have grown to admire over the last year, is nothing compared to the weight Ray carries. She is a rock star in every sense of the word. She has acquired strength and experience that a woman her age should never have to have earned the right to own.

My hat is off to you, Ray. And to Summer. And to countless others of the women I know who are towers of strength. When my life feels overwhelming, part of what brings me back is knowing some of you carry much greater burdens than I, and with such grace and love and power and inspiration. Know you are loved!