Death is a bastard so be nice to yourself..
Some 10 years ago, plus or minus a few for this exhausted writer, dad had his first stroke. Actually Dad had a few transient ischemic attacks (TIA), or stroke like events, the 10 days leading into his stroke. Being stubborn as a mule and tough as a horse, dad only went to a local “doc in a box” for help which couldn’t do anything because he was always there well after the TIA attacks. Then the stroke hit! At the time my brother was working full-time at a local coffee shop and I was working through finals for my second degree in Accounting. Dad, being a good dad, didn’t want to bother either one of us at work and school so he drove himself to the hospital during his stroke.
Yes, you read that right! Dad drove himself to the hospital during his first stoke. Apparently he felt perfectly comfortable in the drivers seat of his Jeep Wrangler, a manual transmission mind you, but was utterly confused the second he got out of the car. According to the E.R. that night, dad gave a stranger in the hospital parking lot his wallet and was incoherent with his speech so the stranger led dad to the E.R. Better lucky than good, thank you stranger for not robbing dad blind and, more importantly, for helping dad get to help!
Fast forward to August 2017. This time dad was not able to drive himself to the E.R. Ironically, a different stranger found dad laying in his driveway and called 911. Thank you again stranger B! I got a call from the Boise Fire Department on a Friday saying dad was bloody, confused, and mostly incoherent. This time dad would not recover from massive multiple strokes. Dad finally got to rest on January 8th, 2018. RIP DAD!!!
My brother and I’s caregiving experience regarding dad has been complicated at best. Being the oldest, dad gave me the honor of having Power of Attorney. During this time period, Grandma Cake or dad’s mom, passed away. Dad’s first stroke left him with severe speech aphasia along with some personality changes but he had no physical symptoms. That stroke led to the discovery of dad’s heart disease which required a triple bypass in order to extend his life. You try helping a retired Air Force pilot, their ego doesn’t alway lend itself to asking for help, even during health scares :)
Now, I’m not sure what qualifies for someone to be an expert “caregiver”. I’ve shared with you only a partial story of what my brother and I have done as far as caregiving for dad and grandma goes. I don’t know if you have to be a caregiver for more than 3 months, 6 months, a year before being able to be considered qualified to write a post about caregiving? Frankly I don’t care. The following is a list of ideas and thoughts my brother and I have gathered in our caregiving story. My sincere hope is that by sharing this story I can open up a space for someone smarter and brighter than I to create the ultimate caregiving model. Until then, this is my way of fighting through the grieving process in the hopes of healing my drained soul.
1. Death is undefeated and a real bastard of a poor sport.
Ever since and The Big Bang Theory, who knows probably before too, death has always won. Stars explode, planets are destroyed, time dies, asteroids crash, and so it goes. No human being has ever lived longer than 130 years. Dogs, who deserve to be immortal for their unconditional love, die way to soon. Plants must die or we would not have oxygen. Even brilliantly written and acted t.v. shows, like The West Wing, eventually die due to poor ratings.
Yes, I know we all know that death is one of the only constants regarding life. However, I wanted to reinforce this constant of life because we all (humankind) have become arrogant in our belief that we can defeat death. We take great comfort and almost demand that every doctor and nurse believe that they can fight death and win. As caregiver’s and in this story, adult-kid caregivers who were not ready to say goodbye to our dad, we expected technology and precision medicine to do their thing in order to give us our dad back. After all, dad was only 76 when he died. In a country that has sent men to the moon, decoded our DNA, built monstrous buildings and damns just because we can, and has more money than it knows what to do with, dying at 76 is almost unheard of anymore unless it is at the hands of a gun.
St. Al’s, supposedly one of the best stroke care hospitals in the country, showed almost no care and compassion towards my brother and I as caregivers. From switching his room and floors without telling us on multiple occasions to giving us almost no information regarding dad’s true condition because we were at work, decisions around the idea of dad getting better, despite the hospital knowing better, were our standard operating procedure. Emerson House, a local memory care clinic, promised the world to us in regards to dad’s quality of life. This promise became even greater once they found out dad was a highly decorated retired one-star general. In the end Emerson House almost killed dad to neglect and incompetence. Valley View Rehab was the first component of this healthcare story that finally talked to my brother and I from the point of view that dad was going to die soon. Unfortunately my brother and I had already deduced this for ourselves and had begun the insanely odd process of accepting dads fate. We should not have had to come to this conclusion by ourselves, this process should have started in the hospital once they knew the extend of dad’s brain injuries.
Thanks to the wonderful care and compassion of Keystone Hospice and Valley View Rehab, my brother and I were in the room when dad took his last breathe. We got to dad about an hour before his last breathe. It was obvious by his blank stare and labored breathing that he was already gone. That said, I don’t think I will ever get the image of dad’s last 4 to 5 breathes out of my head. Although he went quickly and quietly, dad looked like he was in tremendous pain right before he left. The desire to call for help versus knowing death had won was almost literally tearing my insides apart from the stress of that moment. Death didn’t care that my brother and I were in the room to try and bring dad some comfort and acceptance, nor did it care about all the work we had done leading up to that moment, death took dad as it saw fit.
2. You can’t do anything in healthcare without paperwork. Mistakes will happen, bills will be lost and not paid on time, and you will fail at least once at the paperwork game. You will feel guilty and stupid, it hurts like hell too!
I have 2 degrees, one in Political Science and one in Accounting. In my professional life, my employer would like to remain anonymous, I routinely sign paperwork requesting or authorizing millions of dollars in payments. I’ve won 2 Director’s Awards in my professional career in the 7 years that I’ve been employed by my current employer. Much of my success has come from my ability to pay attention to specific details and multitask in million dollar stress situations. That said, I completely forgot to pay my mortgage in October of last year. Kind of a big mistake!
Due to my education, professional life, and with having Power of Attorney, it was only natural that I took dad’s financial life over. Dad’s house and car’s are not flashy or exotic by any stretch but they are incredibly well-maintained and paid for. He does own property in a Idaho resort town called McCall, which is also paid for, but outside of that dad was pretty much middle-class personified. Dad’s financial life was not complicated but when combined with my own financial life, I basically had a part-time job running both our houses.
Please don’t get me wrong, I’m not making an excuse at all for missing my mortgage payment. I’m simply telling you the story of life these past 7 months. Mortgage payments are due the exact time time each month and in my case, are the exact same amount every month. I’m smart enough that I could have set up automatic payments but haven’t yet. In the end, I made a mistake that cost me financially and mentally. Along with my credit score taking a hit, my ego is still smarting too. Paying bills is an easy caregiving win, wins are so important in a caregivers life that missing even one will cause pain.
Mom, friends, other family, and Hospice have tried to comfort me in explaining that mistakes will happen, just get over it. They are correct in theory, but in actuality they need to shut up. Paying a bill, especially when money is not a factor, is one of the simplest aspects of caregiving. It takes 2 minutes, requires little to no mental energy, and is usually a process that happens every month at every time. That said, it hurts like hell because the exhaustion makes you start to questioning your own capabilities as a human. It is the paper cut of life, in the grand scheme of the situation minor at best but it hurts like a son of a bitch. By trivializing the mistake my support team was pouring more salt in the wound. All I can do is use the hurt to make sure I don’t make the same mistake again in November.
3. The confusion and anxiety the day of the funeral is almost paralyzing.
Dad’s gravesite service was at 3pm at the Idaho State Veterans Cemetery. Dad hated pomp and circumstance, especially that which came with being a General. He was a pilot in his heart and soul, flying was what he enjoyed and wanted to do in his career. With that in mind, we arranged for a A-10 flyby for the service which was the only pomp thing we had. Otherwise, it was a basic and simple affair, just as dad wanted.
I was doing o.k. mentally the day of the service until about noon that day. Noon was when I figured I needed to turn the t.v. off and start getting ready. It was also the time the tears started! As childish and immature as this might sound, my mind decided if I didn’t get ready that the service would not happen and therefore dad was not really dead. My feet felt like they had cement blocks and my eyes were so watery I could not see. I was not done fighting death nor did I want to admit that we had lost to the bastard.
Since I had received that phone call from the Boise Fire Department, my brother and I had been running a stressful sprint against the bastard in regards to dad’s care. We were in crisis mood for half a year straight, there is no day’s off in crisis mood. The day of dad’s service was the first time we realized that the crisis mood we had been operating in was finally over. Our body’s and mind’s were finally relaxing, but in this case relaxing did not mean a smile on a beach with no cell service. Relaxing meant the gravity of the moment was finally greater than our ability to sprint.
4. Self-care, yeah right!
I absolutely hate this term right now. When I hear it uttered by others its like fingernails on a chalk board while listening to the idiocy of President Trump’s military parade idea or his utter lack of human respect for women. Self-care is the ultimate buzzword used by others when they have nothing else to offer in the way of tangible support or ideas regarding caregiving. You may express your anger at my self-care thoughts in my comment section below.
Why do I hate this term you ask?
First, during crisis mood my brother and I had little to no idea what we were doing. We were coping the best we could based on what dad would have wanted, our physical and mental well-being at any given moment, and with whatever resources were available at the time to us. I could not plan on working an 8 hour shift, spending 2 to 3 hours with dad, 1 to 2 hours on paperwork, then working out for 1 to 2 hours. Our healthcare system does not give a damn about my time or work schedule. Today’s healthcare system is excellent at robbing time from its patients and caregivers and is not open to change.
Second, my brother and I tried to spend as much of our non-working time with dad as possible. We were with him during nights and weekends as much as he would allow us to be. One of the awesome things Valley View Rehab did for us was encourage my brother and I to take time off, they promised to have dad’s back. This was greatly appreciated and needed for my brother and I’s health! That said here is the secret that does not get talked about, I still felt guilty as hell for not spending my free time with dad. Guilt was just as much of this experience as the paperwork. Not exactly the mindset needed to head to the gym or go skiing or for smiling for longer than a few seconds.
Once Valley View Rehab took over, my free time consisted of going to Subway after work for a steak and cheese sandwich, pj’s and tv by 6:15pm, ice pack on my neck by 6:16pm, and hopefully asleep by 8 or 9pm. Self-care was the fact that my cell phone was only ringing for absolute emergencies, not the day to day operations of caregiving. The simple peace of being home after only working an 8 hour shift was amazing and hard to articulate. Enjoying a rare moment or two of simplicity is all that caregiving would allow us.
Finally, as I look back over this story, practicing “self-care” as it is commonly preached would not have made me a better caregiver or a healthier chronic pain patient. Self-care would not have prevented me from missing my October mortgage payment or would have helped my brother and I get more accurate information while dad was at St. Al’s. Getting up each and every morning and trying to help dad was the only thing that made me a better caregiver and chronic pain patient. In this part of my story, self-care meant not giving up on dad or my sprint with the bastard death.
5. “Be nice to yourself” - Joanne.
“Be nice to yourself”, this piece of advice comes from my wonderful and amazing friend Joanne. Joanne lost her mom in 2017 to the bastard known as cancer. As is the case since I first meet her online, Joanne has been an excellent friend and source of great support, she has also been an amazing mentor during this story with dad.
As I sit here in Starbucks finishing this post, I now know that “be nice to yourself” is the only way to truly piss off death. Being nice to myself is the most powerful tool I have against dad’s death. It would be easy for me to dive into a deep depression because I felt guilty for not spending more time with dad before he died. I could spend my time regretting a medical decision I signed off on or go down the path of “what if I did x instead of y?”. This is what death drives us too.
However, if we all realize that part of the human condition is being flawed it is much easier to be nice to ourselves. Dad was a great human being who contributed much to my life and to the life of others. He was powerful individual that accomplished much! Dad was also full of faults and demons. For much of his last years, I think dad finally realized how to be nice to himself which energized him to still want to be a “dad” to the very end for his adult children. His metals, star, awards, and success in his professional career was something to be proud of but seeing those closest to him smile was much more important to him than anything.
I’m full of faults and demons too. The staggeringly large number of people who called me an assh*$@ last year alone would gladly attest to that. I’ve treated people poorly and have regrets just like most everyone else. That said, I’m starting to accept that I’m actually not an assh*$@, harasser, or anything else that I’ve been called recently. I’m just a human being who continues to try to become better than I was yesterday, nothing more or less.
I tried my best to be a comfort and positive influence for dad before he died. Yes, today I can say I could have done that job better but that is only because I’ve lived through the experience once already. Best is best, be nice to yourself and that becomes a deeply more profound statement than it appears on its surface.
Good luck to all current and future caregivers! You have my unconditional love and respect. To all past caregivers, please please please realize you did the best you could at that particular moment. You have earned the right to rest proudly for what you have accomplished.