My mom Irene Cohen passed on last week. She was one person in our world but her impact and love for people was absolutely amazing with global reach. The amount of love for her, notes that poured in about her and people who have felt the impact just leveled our family.
I have been thinking about her and learning about the depth of human emotion and feeling. In the past, I have lost people and felt great emotional pain. I have carried these people in my heart for all my life and even reflect often on our loss. In the case of my mother, I felt a part of myself ripped to the point where I felt a pain that I never experienced before. I was desperately reading posts and information about the loss of a parent and specifically a mother to understand if what I feel and felt was normal.
What I have discovered through the reflection of many people, is that the loss of a mother is something that goes beyond natural human comprehension in regard to the sharing of pain and empathy. The loss of a mother in truth is a pain like no other.
I started to think about my future, my life and my legacy in conjunction with the loss of mom. This isn’t about my personal fear of death as much as it is about living my best life. I have spent many years watching and learning from my mother. Her spirit of service to others was one of her most unwavering qualities. As she progressed with her illness and sickness, she was “teaching” and doctors were “learning” from her and this unusual situation. She said that in her pain and misery the good comes from them being able to help others. I wish the good would have come from them being able to help her.
Losing mom means a lot for me, my sister and my family. To write and publicly expose our feelings is a monumental honor of mom. The pain I feel today is more confusing than explainable. How does one express this kind of pain? My beautiful and special wife gifted me with patience and kindness through these past few weeks. The complexity of her kindness is found in her own knowledge of losing parents. She knew how hard this would be and just stood ready to catch me when I truly realized the feelings.
In the midst of all this pain, there is an underlying anger and pain as well.
We are like stars in the sky, we are many and we are unique but we are also easy to miss. If one disappears in the night sky from one day to the next, anyone but an expert or those who pay careful attention wouldn’t know the difference.
Right in Plain Sight
My sister and I will work through the long of the story for a more detailed examination but for today, there is a message. If you have a loved one that is sick and in the care of a hospital or nursing facility, realize that people care but institutions do not.
My mother was ill with multiple contributing factors. She had cancer and a condition called NOH which many people don’t know about or have never heard of. In addition to this, she wasn’t an athletic person and lived a mostly sedentary lifestyle which also contributed to her poor health. Ultimately, it wasn’t cancer that killed her, it was a cardiac arrest as a result of low blood pressure. This was directly attributed to the NOH.
Doctors didn’t choose to give mom any of her afflictions but they did decide what to treat, when to treat and how to treat her. It all wound up being about money, reputation and unspoken decision rights they made.
In a conversation with one of the doctors in moms final hours, I asked if they (the doctors) had a license to kill her as opposed to the oath they took to help patients. The medical system in most of the United States doesn’t allow euthanasia but it certainly supports deprivation. Mom died as a result of being deprived the medication required to raise her blood pressure. While there were other complicating factors including Covid which she got while in the hospital under their care, it wasn’t anything other than a doctors decision to deprive her of the medication required.
The next day, I stood in the cemetery where my mother would find her final resting place, looking at more disturbed piles of dirt I’d ever seen in all my years going there. Many people are dying as a result of Covid even if they don’t die of Covid itself. Doctors are choosing who to save and who not to save based on their availability and exhaustion. It’s not an opinion that these doctors made decisions against what my sister and I wanted. It is a fact.
I have spent time thinking about it with my sister. We went to the cemetery a few days ago and spoke about it. What would mom want? What would she do? What are we supposed to do?
This is an image of mom in a rehab facility. At this point, she was under quarantine for being transported from the hospital. We couldn’t go into see her and this would be the last moments my boys could speak with her. The facility didn’t give her the medication required and she was confused and frustrated. We couldn’t understand why she struggled to figure out how to use the phone. Confusion is a direct side effect of withdrawal from the medication she was on. We were able to find out, they didn’t give it to her.
Mom was a fighter. Unfortunately, she always put others before herself. Stacey and I realize that we must tell her story because that’s what she would want. Let’s start with this here and now. If you have someone in your care, don’t let a moment escape where you find yourself believing the nice person on the phone or at the facility will be able to do what is required to help your loved one. This point is not about the intent of a healthcare person. There are a great many people in healthcare that are wonderful people. The problem is the system itself is so broken that individuals can’t overcome the failings poor decisions by leadership in health care, poor technologies, overwhelmed or overworked staff, and the money machine.
In our case, what we could have, should have, or would have done is all arm chair quarterbacking. We did what we knew to do and we advocated and fought for mom with the thinking and belief that a team of people were in our corner. The last few days of her life unfortunately taught us that our perception of people being helpful and helping was more about them vs what mom wanted. People rushed to get us to move to a “Do not resuscitate.” They told us what they weren’t willing to do instead of what we asked them to do and in the end, they let her go and accelerated her death by deprivation. We asked them to give her the medication just so that we could talk to her, that she would become conscious. They said they would but then chose not to as they decided “she’s way past that.” I understand what this looks and sounds like but tell me please what would you do to extend the life of a parent or a child or someone you love deeply who has made their wishes clear?
If doctors have the ability to literally get away with deprivation, we may need to reconsider euthanasia as a right for patients. My mother planned on fighting, the institution took the ring, her gloves, her water, her face guard and left her with the inability to communicate and on top of everything else, physically separated and isolated from her children, grandchildren and husband.
“Ma, Stacey and I aren’t done fighting and we will have your story told.” – Howie