Over the next few weeks, I'll be sharing regular posts about how I'm preparing for radiation. I'm hoping these can help someone else, as I struggled to find a conversational source like this that dealt with the subject. For more information on my brain tumor, check out these posts.
Whether because of an accident, serious illness, or natural aging, we will all face the end of our lives. If you're breathing, this pertains to you. Most of us don't want to think about dying though, I know I didn't, and so we put off conversations and avoid thinking about our preferences when it comes to end of life care. Sadly, that can result in our loved ones being put in a difficult position of not knowing what we would want and having to make choices on our behalf, choices that can be difficult or even traumatizing, and may not be what we would prefer at all. How can we avoid that burden being put on those closest to us? By thinking ahead a little and recording our preferences, so that when the time comes, they know what we want and they don't have the pressure of trying to figure it out themselves in the midst of an emotionally challenging time.
Originally, my husband and I did this through drafting wills. We laid out who we would like to take care of our young children in the event we were unable to as well as detailing the provisions we had put in place for them. One of my favorite stories took place about ten years ago when my husband, my Mom and our youngest son were backpacking on the Olympic Peninsula. They had spent the morning exploring the cliffs and caverns, with my husband intent on finding an old mine rumored to be in the area. After a while, my mother was done and ready to head back to camp for a well-deserved nap. My son joined her, but my husband remained to continue exploring. As they were on their way back, they heard my husband yodeling, followed by the sound of sliding rocks. That prompted my son to ask my mother, "Grandma, did you update your will before this trip? Cuz Dad did!"
We've been very transparent with our kids about our wills and intentions, the hope being that communication now would soothe over any potential tensions later. When we found my brain tumor back in 2023, the hospital placed great importance on my having a living will, or health directive, in place and on file with them. As I mentioned earlier, the goal of this was to prevent my husband, or other loved one, from having to decide things for me when I was unable to do so. At first, he feared that this would have to be used sooner rather than later when it took 24 hours to revive me after my first brain surgery, despite intense, even violent effort. But, by God's will, I did wake up and am here, writing to you, today. This health directive was brief, definitely lacking in detail, but it was all I was up for at the time.
The next year, I asked my husband for a detailed, specific list of what I was to do in the case that he died. He was doing a lot of dangerous hiking at the time and with my deeply creative imagination it was not difficult for me to picture being in a place where I had no idea what to do with our finances or other assets. During that season, as well as most of our marriage, my husband was in charge of the finances and I had no idea how much money we had, where it was stored, how the bills were paid, anything. This was not my husband's preference, mind you, it was mine. I had so much else going on in life, and I felt so ill-equipped to work with the finances, that I had put that burden on him for much of our marriage. Then, though, I was feeling the weight and folly of my choices and more than a little afraid of messing everything up if the worst were to happen to him. So, my husband created our "In Case of Emergency" document, and he made sure that each of our children were briefed on it so that, again, they would be prepared and informed in the case of our death.
In the fall of that year, my son had a seizure. That was a both faith-building and terrifying season. While in the office of the neurologist, the same office I see for my brain tumor, we came across a document in the waiting room called the "Five Wishes." I had never heard of this before and was intrigued. We picked up a copy, and I brought it home and scanned it, with the full intention of filling it out, but that never happened. Now, as we look to prepare for radiation, end of life planning and preferences are once again top of mind. With my new awareness of the Five Wishes, my husband and I determined that this would be an excellent tool for us to use to really think through what we want.
Five Wishes
Wish 1
This wish lays out who you would like to act as your healthcare agent in the situation that you are unable to communicate for yourself and make decisions on your own behalf. This should be someone you trust, and you should share this document with them to make sure they are fully informed about your preferences. It might be your spouse or child, or you might determine that in the case of your incapacitation this would be an undue burden on them, and you might pick someone who is a little more removed and able to follow your wished clearly with a cool head. The document also gives you the ability to choose one or more alternates in the case that your first choice is unable or unwilling to serve.
Wish 2
Wish 2 is your standard healthcare directive or living will. It lays out what levels of life support you are comfortable with in different situations. When I created my original healthcare directive, I hadn't even thought of some of these potentials or the different levels of life support available, so I found this very useful. In fact, before I began filling it out, I thought I would definitely want fluids and nutrition administered, but the more I read through, thought and prayed about it, I found that my preferences were different. The idea of those artificially trapping me in my body indefinitely actually became more unpleasant than that of not having them. So, I found a middle ground that felt right to me, asking to be on artificial life support, including fluids and nutrition, for no more than a month if improvement was not expected. Laying out here exactly what you want is a gift to your loved ones, taking the burden of choice off of them and giving them permission to live in the moment with you as you pass.
Wish 3
The last three wishes are what set the Five Wishes apart from a standard living will. Here you think through and decide on personal preferences about the end of your life and how you would like to be treated. The document helps you to consider how you want to be cared for. What type of pain management would you prefer? Do you like to have a cool moist cloth on your forehead during a fever, or does that drive you nuts? Do you want to be kept clean and have your personal care needs, like shaving or nail clipping, attended to? Would you like someone to read to you, and if so, do you have any preferences? I took the opportunity to list here some of my favorite scripture passages that point to my heavenly home.
Wish 4
If your loved ones know you will want something, like to not be left alone or to have someone pray with you, this empowers them to do it and opens doors at facilities where they might otherwise be closed. For example, many facilities do not allow for overnight visitors, but my husband's strong preference is to stay with me. A living will that calls for this would allow him to be with me as he desires. In Wish 4 you can share your preferences on if you want to have people with you, have your hand held, be prayed for and visited by clergy, or maybe, like me, you want to have music played. I actually listed the specific Spotify playlist I would like.
Wish 5
Finally, Wish 5 talks about how you'd like to be remembered. One of the greatest gifts my Grandfather gave to our family was planning out his own memorial service. All of the provisions had been put in place, a casket purchased and burial plot reserved and paid for. He shared what songs he wanted sung and he even wrote his own obituary. I didn't go that far, but I did want to make things simpler for those that would be in charge of this for me, since I won't be there to help them. After careful consideration, my husband and I decided what we would like done with our remains (and we've added making those arrangements to our to-do list before radiation). I wrote down what was important to me that people remember about me. I guess it's a form of an obituary, maybe it will help whoever writes it for me, but in any case, I got to have a say in what is said about my life, highlighting what was important to me. I shared about my favorite songs that I would like played at a service as well as other components that are important to me, like pictures. I put in there a link to a blog post that I would like to be read, sharing the gospel one last time with my loved ones. It even prompts you to consider what you would like done with your social media or other online presences. Boy I wish someone had done this for my family earlier! It was really weird to see my dead Grandpa commenting on Facebook posts because my aunt was using his computer to pay my Grandma's bills and hadn't thought to switch accounts! This is also where you can itemize any donations of finances or the body you no longer require.
Here's the Thing: Filling out this document doesn't guarantee that all or any of these things will be done, but it does make them much more likely. People can't do what you want if they don't know what that is! Many people wait to fill something like this out until they are elderly or have a terminal condition. The thing is, you don't always have warning before something like this occurs. Taking an evening to fill this out can save a great amount of heart ache for your loved ones. Don't you think it's worth it?
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