You are going to die! Get over it. You are! Like it or not. This is such a horrible and scary concept, but it is one that we are all going to face, so stop pretending. It dumbfounds me that people spend a lifetime not preparing for this moment. And for those of us who are planners, it is still taboo to talk about it. It’s like we don’t want to press our luck, as if luck plays a role in this stage of life.
Being a young mom with not a ton of faith in the people who would have been dubbed responsible to fulfill my wishes, I typed them out on a piece of paper and had them notarized and gave them to my sister to make sure it all happened the way I wanted. So just a sneak peek…if you didn’t take time to see me or spend time with me in life, you are not going to get to do it in my death! My funeral will be fast, furious and fabulous! Honestly, if I could pull off a Vikings funeral at the Inlet of North Wildwood without my friends and family going to jail for abuse of a corpse and probably a string of other felonies, that would really be my final wish. Can you imagine a bunch of intoxicated people standing along the shoreline with flaming arrows in hand? Be still my heart!
It is terrible not knowing what your loved one would have wanted when that time comes. Not everyone is as morbid in planning in this area as I am. The most brutal conversation I had with anyone in my life was the one I had with my husband when he was diagnosed with cancer. I knew he had life insurance and a pension. I also knew he had a plot in Indian Gap through the Army, but I had no idea what and where or how to even access any of it. Even worse was the night I had to say to him, “If this goes south, honey, what do you want me to do, what are your final wishes?” Talk about a sucker punch in the gut. He was a military man for Christ’s sake, why in the hell did I not know this before facing his illness? I promise you, as the day is long, this will be the most horrible conversation you will have with anyone when the issue of death is standing right in front of you staring you in the eyes. Do you want a viewing? If so, one day or two days? Do you want to be buried or cremated? Where do I bury you? What do I do with your ashes? Do you want a mass of Christian burial? Do you have an organization that you would want donations in your name? I know that most people just make decisions for their love ones, because, let’s face it…THEY ARE DEAD, and THEY GET WHAT THEY GET AND THEY CAN’T GET UPSET! How many schoolteachers just laughed at how I used that phrase for an end of life subject? But I have watched families torn apart when everyone has a different view of what their loved one would have wanted.
Not only is the plan important, but how do you choose who will carry it out? My husband is an ICU nurse and I spent the first 12 years of my career in Subacute and Long-term Care. Lots of people have died around us. I cannot tell you how many people had expressed wishes to their loved ones that those people did not honor. Those poor people seriously did just get what they got…intubated, ventilators, feeding, etc.…all the things they explicitly told someone they did not want. The mistake was this…it wasn’t in writing, notarized as their wish, and put in the hands of the person who has the balls to make sure it happens. I hope these poor people haunted their loved ones a bit afterwards as a get back! But in all seriousness, you need to have a plan and a solid person to make sure you plan is carried out. But be warned! If you have that final say over another person’s life, or death to be more politically correct, there is a stiff price to pay.
In 2000, my father started to have health issues. It started out as mini strokes, syncope episodes, and memory issues. The initial diagnosis was Parkinson’s Disease. But after spending a week with him on vacation that summer, I was positive they were wrong. I drug my poor dad to more doctors to be poked, prodded and continued to push to get what would be his final diagnosis…Lewy Bodies Dementia. This is not your typical dementia. It has the cognitive/memory components of Alzheimer’s Disease and the physical components of Parkinson’s Disease however, none of the medications that work for those diseases will help in this disease. There is a severe psychosis that goes hand in hand Lewy Bodies. There are visual hallucinations and severe personality changes that made this amazing man I adored so much, mean and violent at times. The change was so significant and horrifying to him, that he attempted to take his own life on 2 occasions so that the disease would not. I mention this here because if I see one more person share a picture of Robin Williams as a depressed man who took his life I am going to SCREAM!!! He had Lewy Bodies Disease. He could have easily been in a hallucinogenic and psychotic state at that moment. UGH! Sorry, I digress. This is a fast-progressive disease with a typical life expectancy of 5 to 7 years. In 2001, when the doctors finally figured this out, my dad was only 63 years old.
Most of us are in this sandwich generation, where we are raising our kids and taking care of elderly and ill parents. It is a demanding and painful place to live in. I was so utterly blessed during my father’s illness. I did not have to face that task alone. I shared this daunting task with 8 other siblings. (Really 9, but one doesn’t count for the purpose of this story.) And even then, it was not easy. When my dad was first diagnosed, I did what I do best, I took control. There were doctors’ appointments and therapy and I organized things with everyone to see who could be where and when. But there was one task I needed to do myself. I showed up after work and told my parents that we needed to get some things in writing, we needed Power of Attorneys and Living Wills. At first, they both balked at the idea and then I said…” Do either of you really want to do this when you are actually dying? Have you not met the 10 of us?” Besides having the same parents and genes, my siblings and I are all very different in the way we live our lives and our thought process. So, my parents reluctantly answered all my questions as I typed. I asked the same questions as above…do you want a mass of Christian burial, one day viewing or two, etc. We went so far as, “What do you want to wear to your funeral?” At this point, we were having a good time. “I want to wear my brown suit that I wore to Tom’s wedding! But I don’t want them to cut it?” “What do you mean, Dad?” “You know, they cut the suit in half and just tuck it under you?” “Really?” I said? “Well I am just being thrown into the fire naked!” “Naked! And if you don’t want that suit cut, and you feel that tonight might be your night, I suggest you wear that suit to bed!” We found a way to make it fun. My mom wants to borrow my sisters’ shoes for her viewing! As if we will take them off of her at the end! Even when my dad decided to donate his brain postmortem for research, I said, “Great, we can have a Wizard of Oz themed funeral…’If you only had a brain…do doot do doodly do!” I can assure you from experience, when you are facing the real possibility of a death when you are sick, you are not having fun. So, get your asses in gear and get this done!
When it came to choosing a Durable Power of Attorney, the one who hypothetically gets to say, ‘Pull the plug’, it was my mom first, of course, and then me. Why me? “Because you know the most about the medical field and you won’t cry like the others?” Cry like the others? Was that a compliment or was it an insult? When my dad first got sick and started to have these episodes, I was the first person they would call. He made it clear that I was not to call anyone else because they would get emotional. I can recall once he was sent to the ER and I was a distance away. In a panic, I called my sister and asked her to go. On her way, she called everyone else. By time I got there, everyone was around him…crying, petting his head, etc. He took one look at me and said, “You’re fired!” I couldn’t help but laugh. I am clearly the realist and most levelheaded when it comes to death, but that doesn’t mean that it does not completely tear me up inside. Yes, I had the task of POA for my dad’s medical decisions, as my mom sort of resigned her primary role to me. And to some degree, it did cause some ill feelings with others in my family that I was asked and not them. But let me tell you something. This is not a prized role. It is equally a curse as it is an honor and there is a very steep price you pay to be that person for someone else.
My dad was not the first person who asked me to be their Power of Attorney, the first person was my brother’s girlfriend. Her illness was very short, and I had to make the decision to put her into hospice rather than let her go back to my brother. He did not have the cognitive, emotional or physical means to care for her so, she was transferred to a very nice hospice facility where she died pain free and with the amount of dignity that a situation like death allows. I do understand that my brother has a mental illness issues, but the texts labeling me the angel of death was enough to almost make me lose my mind. My dad, however, had a much longer illness, which took a greater toll on my soul.
Although Lewy Bodies Disease has a life expectancy of 5-7 years, we were so educated and aggressive in my dad’s treatment, and therefore, my dad lived 16 years after diagnosis. His decline was painful to watch as he fought it like no one I ever saw fight. Early in the disease, he had watched stories of how Dr. Kevorkian was ending people’s suffering with mercy killing. In what I thought was a joking conversation, my dad said, “If I ever get that bad, promise me you will call Kevorkian and get me a little pill.” I teasingly responded, “You got it!” I never imagined that this conversation would ever come up again, but when my dad started to get very bad, he said to me, “Remember that little pill you said you could get me, I think I need it now.” I literally stood there with my mouth open. How did he remember this? He couldn’t even remember if he ate breakfast or how old he was. I remember stumbling over my words, almost stuttering when I said, “Dad, Kevorkian is in prison, and we do not live in a state where something like this is even legal!” He began to cry. Tearfully, he looked me directly in the eye and said, “You let me down.” Typing these words are just as painful today as the day he said them to me all those years ago. I have a picture of my dad on my vanity and from time to time, when I look at it, I hear those words over and over…YOU LET ME DOWN. I find myself still saying to him, “I am so very sorry Dad” all these years later.
As my Dad’s disease progressed, it became more and more painful to carry out this role as his Power of Attorney. My dad had made the decision on NO MORE HOSPITALIZATION. So, he was a DO NOT RESUCUSSITATE AND A DO NOT HOSPITALIZE. When he fell in the nursing home and cracked his head open, do you think it was easy for me to say, “Stitch him and send him back?” No MRI, No CAT Scan? There was no point because he wasn’t staying. My Dad clearly said he did not want any of this as per HIS wishes. Do you think that when he had a severe change in mental status, I did not want to send him out to the emergency room to see what the hell happened? I simply said, “Make sure he is comfortable and monitor him there.” Do you not realize how hard it was when he stopped responding and was having difficulty breathing to not send him to the hospital to see if we could fix it? Do you not think it was a brutal and gut-wrenching call to say to consult hospice, no IV, no oxygen, no nothing when I could clearly see he was struggling, dehydrating, dying? Do you think that I am not haunted by all of this every single day of my life? Do you not think that it eats at me that my mentally ill brother reminds me that I was the angel of death, twice? Do you not think that the arguing with my family over these things didn’t take its toll on me? It has all changed me. It changed relationships. That is why I warn you that this is an honor and a curse. We all deserve the opportunity to die the way we want. We all need to honor the final wishes for those we love. But my God, it is hard to do!
If you take anything from all of this, I hope you take this. You will die so plan your death day as you plan your birthday. Make it grand because it will be the last party your will be planning. Do this not only for your peace of mind, but for your loved ones because what you do not make clear, will be a nightmare for the ones you love…especially issues like who you want to be with you in that final stage. That is one I never thought of that brought tons of stress to our family. Don’t ask for things that are impossible or illegal. And do not make a promise you cannot or will not keep. It took everything in me as my dad suffered to not take a pillow and just lean in to end his struggle in order to ‘not let him down.’ Make sure your plan is clear, notarized and entrusted to someone very strong. I am not sure in looking back that I was the strongest. But I did the job I was asked to do the very best way I knew how. And finally, if you play the role of ‘pulling the plug’ for another, know that there is a price to pay as well. Ask God to help you find peace along the way, you will need it! Persevere Bitches!