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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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.