The Reality of Caregiving: Lessons from My Dad’s Final Months
Happy Father’s Day. To all that choose this honored profession. Without dads, we probably wouldn’t have GoPro’s or half the extreme sports we enjoy today.
If you are not familiar with my story, my dad passed away January 2018 after a 6-month battle with multiple strokes and heart attacks. Needless to say, Father’s Day ever since his passing has not been easy. I’m not sure if time heals or just makes processing a traumatic event easier. Regardless, I thought I would write a post about my experiences, knowledge gained, and questions I still struggle with some 7 years later.
Even though dad was not one to seek or even desired attention, I think he would be proud of the fact I am trying to help others by sharing what I learned as his caregiver during the final months of his life.
Often bloggers like me write posts like that under the umbrella of helping others develop their own informed consent. After all, there is no better teacher than experience. We share our experiences and knowledge as part of our advocacy. The more people we can reach with our story, the more we are changing the world for the better is the logic. Sounds noble right.
Informed Consent. Here is the first dirty little secret about caregiving most will not tell you. Informed consent is a dream, an unrealistic ideal. Caregiving is not about being informed, it’s about doing the best you can at that moment. As much as we might try to gather information, research, and preplan with our parents or loved ones, caregiving is largely based on reacting to a medical emergency under the gun of time.
Let me paint you a picture: it’s the third Friday in August 2017. Dad had been experiencing some “bad” days where he did not feel right and was concerned. Even though he was not feeling good, there was not much change that we could see in his personality. Dad was dad. Sure, dad probably shouldn’t go back to flying jets or be put in command of a military base like he was before retirement, but for an old dude he seemed to be doing fine.
Around 4:20 that now infamous Friday in August, I had turned in my final to do for the week to my boss and was about ready finish out the day on automatic pilot. To put it another way, I was going to check out the Sheriff Department’s arrest report to see if I knew anyone who had been recently arrested.
Around 4:35pm, my phone rang and saw dad’s name on the caller ID. Since dad knew I was at work until 5pm that day, I figured he was calling to arrange a steak dinner (not the first-time dad had called about getting a steak) and wanted to catch me before I went home. My instinct was to let it go to voicemail and call him back as soon as I was off, luckily, I did not listen to my instinct.
Turns out, it was the fire department calling to tell me they’d found Dad lying in his driveway—bloody, barely conscious, and unable to speak. The ambulance was there so they were calling to inform me of the situation. Obviously, my hopes of a steak dinner were gone. I quickly tracked down my younger brother and we meet up at the emergency department at St. Al’s. Dad had experienced a stroke, a bad one. A stroke is not a diagnosis like most people think, it’s a symptom. My brother and I were officially on the clock.
No amount of planning or prep could have prepared my brother and I for that Friday. We were in shock, concerned, confused, and in desperate need of more information. The problem is doctors, nurses, and other providers spend a lifetime studying medicine and often retire with more questions than they started their career with. I was being asked to make medical decisions for dad with real consequences after only minutes of studying.
It's nearly impossible to make an informed decision while in a state of shock and confusion with a doctor wanting to administer a med in the next few minutes. In situations like this, informed consent is basically flipping a coin and accepting the result as medical fact.
Mistakes will be made, get over it and move on. Dad had a long history with kidney issues. He was prone to kidney stones, a couple of times he was even grounded because of this condition. Shortly after moving into his second nursing facility, it was discovered that dad was experiencing a large stone that had to be causing a lot of pain. Unfortunately, he was no longer able to verbalize this, so we have no idea how long he was in pain before the stone was discovered.
On the surface, this would seem like an easy, straightforward medical decision. Do whatever needs to be done to bust the stone up to relieve dad’s pain. Simple, right? That’s what we thought, turns out it wasn’t that simple.
At this point dad’s dementia was bad. He was basically living in his own world of his mind’s creation. We were certain that dad knew he had kids, but he had no idea that they were my brother and I. Due to his dementia, they had to completely knock him out for the procedure. Turns out, anesthesia can and often causes patients to dive deeper into their dementia. A fact we did not discover until after his kidney stone procedure.
Despite Dad’s mental state worsening, we hold no anger or ill will toward his doctors or the system. To this day, I’m positive we would have made the same decision if we had known that dad’s dementia would get worse due to the anesthesia. We made the best decision we could at that moment, learned of the results, and was forced to make new decisions based on this new normal. This is the essence of caregiving; this is the reality of caregiving.
Self-care is selfish, do it anyway. During this time, I got told countless times that I needed to practice self-care because you “can’t pour from an empty cup”. First of all, I’m not a cup—and definitely not cup with limited potential. Second, love, respect, admiration, or some combination of all the above are not finite qualities. We have an unlimited supply of it, it’s not stupid water in a stupid cup. Ok, I’ll jump off my high horse.
During dad’s first stroke around 2007, he would frequently have a nurse call either my brother or I to tell us we didn’t need to come see him, that he wanted us to go have fun. He understood that his life was about the stroke, not ours. Dad wanted to make sure we still had a chance to live our lives to the fullest because he had the same opportunity. As odd as this might sound, that brought him joy.
Unfortunately, we knew early on that this stroke was different. Dad was going to need luck if he was going to recover as well as he did after his first stroke. This meant time was a finite resource. Even though his dementia made any kind of communication with dad nearly impossible, there was a strong sense of guilt if we didn’t try.
After all, it only took 20 minutes to drive to his nursing facility and often 30 minutes would be a long visit. It’s hard to justify taking a “self-care” day when 60 minutes out of our day was all it took to visit dad. That said, do it anyone because life doesn’t end, it only changes to reflect the players currently active in it.
Life. In the past, I have talked about our country’s bizarre fascination with the idea that time equals quality of life. That we have romanticized this idea that if we could have just one more day with a loved one, that the reality of the situation would magically become the ideal. We masked this by claiming it’s out of love, spirituality, or religion when in fact, it’s the purest form of selfishness.
The two biggest take aways I learned from my experience as dad’s caregiver is that not only will death win, but it also takes some pervert pleasure in running up the score. It causes undo suffering, misery, and anger simply because it can. Second, and probably the most important piece of knowledge, is there is a huge difference between life and living. Our health care system can keep us living well beyond our parts warranty, what it can’t do is extend our life.
I know, my statements can be seen as controversial, even insulting to some. Hallmark and religion have taught us all that wanting to spend time with others is one of the purest forms of the human experience, that the reasons for that desire don’t matter that only the want is what is important.
Here is the kicker, for the rest of my life that last memory I have of my dad will be watching him die of a massive, painful heart attack. I feel confident in stating that not only would dad not want that he would take no pleasure or comfort in knowing that my brother and I were in the room when he died. No parent would want that.
Although I can’t give you a specific date, dad died the second he was no longer able to recognize my brother and me. I know from previous conversations with him that he would have been perfectly content with someone putting a pillow over him at that point. Life is so much more that simply breathing and existing in time. Living is what health care works on, it does very little for our life.
This is probably the best advice I can give anyone who is a caregiver, especially those who suddenly found themselves in this position. Spend time contemplating your own definition of life versus living, then apply those definitions to the life of the person you are providing care for. Everything from medical decisions to when to take some self-care time will become clearer, you can figure out the rest from that point.
Dad would be the first to admit he could have been a better father, coworker, human. He was incredibility hard on himself and expected others to be just as hard on themselves which is where I get this characteristic from. For dad, perfection wasn’t an ideal it was the minimal standard of acceptance. That said, dad knew that he had a great life and that my brother and I turned out ok. In the end, there is no life without living—so go live while you still can.
