End of Life: Take care of your S__t before S__t happens!
I was doom scrolling through my news feed. I don’t like doom scrolling. In fact I’ve been doing everything in my power to clean up my news feed. Unfortunately, Google will not allow me to get rid of some of the topics that I really hate. I can’t get rid of political topics in my news feed or topics like “war in Ukraine”. Typically these types of headlines are all doom and gloom or filled with negativity. So I try to focus on the topics that I enjoy, mild escapism. Still no matter how many tech, gaming, and music topics I try to fill my feed with, it still feels like doom scrolling as bad news filters through. In this case, the bad news was the death of Harry Belafonte. His politics were a little over the top, but I always enjoyed his music. I was sad to hear that he died, but happy at the same time as he lived to 96 years old. In my book that’s a win. Then while reading the article a little more deeply I saw that he died of congestive heart failure. That hit close to home as I have a close family member who’s suffering from an advanced stage of that same condition. My family member is going to die, and as I write these articles a year in advance, there is a high probability they will pass before this article ever gets posted. What’s unique about my family member’s condition is that they refuse to accept their reality. At over 80 years old and with advanced CHF, they are still acting like they are going to live forever and that’s a problem for everyone involved.
Family is still a wholly unique entity in our world. There are societal norms that most families adhere to, even the dysfunctional ones. When an elderly family member reaches the end stages of their life, the family in question usually, in some way, often becomes the support structure. In my opinion this isn’t ideal as the end of life is a bit akin to the beginning of life. When you first have kids, there is not a lot of formal training in how to properly parent. Even following the parenting script you learned when you were a child, you don’t really know how to handle everything until you’ve been through it a few times. Young parents struggle and stress with their first child or two as they are learning everything as they go. Conversely, If they are the kind of family with three, four or even more kids, then they tend to be able to handle things much easier as the later children arrive. The parents have ‘been there, done that’ and they know how to make decisions and how much emotional weight to give to the various day to day issues that come up.
It’s the same thing when the children of elderly parents are involved with end of life issues. The knowledge on how to handle all the complexity of end of life is all based on what they may have witnessed but there is no mandatory formal training. To make matters worse, it’s much more complicated than childcare in that the elderly parents typically have an opinion, and worse, they have a legal right to act on that opinion even if it’s not in their best interests. As an example, in the case of our family member, they refuse to accept that their heart is so bad they can lose motor skills or pass out at a moment’s notice. So they have chosen to continue driving to the grocery store and local restaurants. This makes them a danger to themselves, the people in the community, and if there is an accident which they won’t survive, they are going to create a massive insurance nightmare for their next of kin.
If a family isn’t really trained or prepared for dealing with elder care, then it’s best to do preparation before it’s needed. As an example, the family member in question needs home care or to be in assisted living for their last few months. Putting aside this family members’ refusal to accept this fact, and starting with assisted living, there is an issue. Assisted living often requires the resident to visit before they are accepted to live at the facility. Our family member is too weak to go travel to assisted living anywhere near her next of kin. They also do not have the mental or emotional capacity to make a decision by themselves for something as important as selecting a facility in their hometown. This is true even if they were emotionally mature enough to accept that this is the period in their life where they need to be cared for. The only other option for the resistant family member is in-home care. Unfortunately, the challenges and complexities of finding quality in-home care are perhaps even more complicated than those of assisted living.
I get it. It takes extreme emotional maturity and bravery to face your own mortality. These are rare traits and I don’t think most people have them. I also think this is why every religion in the world has some sort of afterlife as a component of their belief system. If you are going to go to paradise, be with your god, or get reincarnated into whatever you want to be, facing death is much easier to do for the average person. Unfortunately even this didn’t work for our family member, a devout catholic who hasn’t missed going to church in eight decades. They still refuse to accept their own mortality. This shouldn’t have surprised me. They’ve always been very limited in their ability to deal with challenging emotional issues.
It’s my understanding that the family member in question is feeling extreme anxiety about the unknown. Specifically the loss of their current lifestyle. This intense fear of the unknown is not unique to the family member. It’s a pretty universal human trait. Again, touching on religion, death is the ultimate unknown, so naturally throughout history, people have feared it. It’s not just death. Changing jobs when it wasn’t by choice, moving to a new town, or breaking off a long term relationship are all entry points into great unknowns and can cause fear and anxiety.
Although somewhat unpleasant, breaking up and getting fired from work are things that can happen to us a few times in our life, so we can learn to deal with those experiences. Growing old only happens once if we are lucky, but we know it is going to happen to all of us. This is why I find it so surprising that preparing for eldercare is not really an ingrained part of our culture. Yes, the assisted living companies and the long-term care insurance industry pushes it but that’s not a cultural milestone in life.
If it was simply part of our culture to make plans for your old age, there wouldn’t be an unknown. When I say part of our culture, what I mean is that it’s got to be something that’s celebrated like a wedding or buying your first house. Maybe retirement is a better example. Retirement is something that many people look forward to and discuss openly and with anticipation. They talk about their ‘retirement house’ or where they are going to move to. They discuss the things they are planning to do that they couldn’t engage in as much when they were working. People strive to ‘retire early’.
I’m not an expert on how values are enculturated, but I do know they can be. Smoking used to be universally accepted everywhere. Even McDonalds had ashtrays on every table when I was a kid. Now, for the most part, it’s universally rejected. Imagine if things like getting to create your first will, and picking your assisted living facility was celebrated as much as picking out your china for your wedding registry? What if it was a status symbol? Then it’s not a mystery to be feared or avoided. Just like weddings, everyone, including the sick and elderly family member would be very knowledgeable about what their lifestyle would be like after they left their condo and moved into assisted living. In fact independent and assisted living would become preferable in so many cases I could see where people would probably have already moved as soon as they were able to. This type of enculturation would fix so many challenges that so many families, including my own, face.
Listen, You are going to die. I’m going to die. We all are going to die. It can happen today, it can happen in a year, it can happen in fifty. I can’t change my geriatric family member’s attitude but maybe I can learn from it. I know there should always be some sort of plan that’s put in place long before it’s needed. Maybe by adopting my plan for my eldercare, and celebrating my choices with my friends and family, I can be part of the culture change I’ve called for in this missive. If anything, I think it’d be fun to prepare by having an elder care registry for my assisted living house. Just like my marriage registry I doubt anyone will buy me the 80” TV I put on there, but it’ll still be fun to see it on the list!
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