End of Life Quality of Life
This is not going to be a happy story but it isn’t a sad story either, it’s more a chapter in ongoing story called life. It is a chapter that continues to play out as I sit in this Starbuck’s writing. The characters of this chapter include my dad, younger brother and yours truly. While reading you will discover issues surrounding the idea of care giving, family dynamics, healthcare, and hospice care. However, with some luck and hopefully good writing on my part, my hope is that everyone reading this will spend some time today contemplating your own definition of quality of life because that is ultimately what this chapter is about. How do you define quality of life?
First, it is important to point out that dad is only 76. He is still young to be having all of these health issues. That said, my brother and I are still considered young to be a caregiver to our dad. Due to economics, neither my brother nor I are anywhere close to being financially able to retire right now. We still have to work unless my Powerball ticket was a winner last night.
For those of you that don’t know, around 4:30pm on a Friday afternoon in August 2017, I received a phone call while still at work from Boise Fire regarding dad. Someone found him; we still don’t know whom, on the ground in his driveway. Dad was almost nonresponsive, bloody, and severely dehydrated. Long story short, dad was in bad shape.
The ambulance rushed dad to St. Al’s. Now, St. Al’s has a reputation has one of the best hospitals in the west for patients who have strokes. Turns out that multiple scans and MRI’s showed that dad had several new massive strokes along with renal failure since his first one roughly 10 years ago. Going to St. Al’s was the right choice for him it would seem.
Dad’s first stroke 10 years ago left him with moderate to severe speech aphasia along with some changes to his overall personality (he finally learned to relax). Luckily, he experienced no physical side effects of that stroke. Now I would be remise if I did not take this moment to point out that a stroke is not a disease or diagnoses, a stroke is actually a symptom. In dad’s case, his stroke was a symptom of a clog carotid artery, undiagnosed heart disease, and undiagnosed diabetes.
Up until that August, dad was still successfully living alone. He managed his finances, kept his house almost spotless, and his yard could still win awards today. Cars and driving were a huge part of his life, he loved to jump into one of his 2 cars and go explore or stop by his kid’s homes just to check in. The old man was also heavily involved with helping me take care of my house as I battle multiple arthritis and chronic pain issues. As I write think I think dad had a strong desire to revert back to being a “dad” again. He took a lot of pride and made a huge effort in helping me through countless procedures, surgeries, and doctor’s appointments for my health issues despite his age and own health problems.
When not being dad, he is a retired 1-Star General who flew the F-102, RF-4 Phantom, F-4 Wild Weasel, and the A-10 Warthog before retiring. He led multiple deployments to the Middle East and spent time in Norway flying reconnaissance missions around the Soviet Union during the height of the cold war too. Needless to say, dad has a healthy ego that took a huge hit due to the speech aphasia. Most of the time he would think it was funny when he could not find a word or say the wrong word for the conversation, but he was also profoundly embarrassed by it too. Perfectly understandable, and as any chronic patient will attest too, this is not something that is easily shakable from ones mind.
Jumping back to his current strokes. As my brother and I would quickly find out, these new strokes were a level of seriousness that St. Al’s did a piss poor job preparing us for. These new strokes got the entirely of his short-term memory among other areas of his brain. For example, early in September the hospital gave us a 4-hour pass to take dad back to his house and hopefully to our family’s favorite restaurant the Stagecoach. Dad was terrified by the time we got him back to his house because nothing was familiar to him, I mean absolutely nothing! Once we got him into the elevator at the hospital he did not recognize nor had the skills to process all this new information at once. There were several experiences at his house that my brother and I witnessed that still bring tears to our eyes when we think about them. Our dad was now a dependent child, which happened in a matter of hours. Life…
Chapter – Life
As Tyler and I have found out the hard way, dad no longer has the ability to eat dinner and make conversation with us at the same time. He gets incredibly frustrated and mad when we try. This is unfortunate since Tyler and I still work full-time and can’t get to his facility until dinnertime. Right or wrong that means the only time during the week that we can spend any significant time with dad, without running the risk of upsetting him unnecessarily, is on Saturday and Sunday. This creates considerable guilt with Tyler and I but it’s the best we can do considering our lives right now.
This Saturday, Tyler arrived at dad’s skilled nursing facility at roughly 1:30pm. I was being lazy due to severe neck and lower back pain during the week so I was still a few hours away from making it to dad. According to Tyler, dad’s skin looked waxy, he was unresponsive to him, and appeared to be twisting and pulling in an attempt to get himself out of bed. (More and more, Tyler and I don’t think dad recognizes us anymore but that still doesn’t ease the pain of ones dad not knowing who his kid is.)
Tyler tried for as long as he could to spend time with dad but had to leave for his own mental health. As he was leaving I received the following text from him, “I hate this so much.” Perfectly sums up my feelings too!
I arrived at 3:15pm to see dad. Not much had changed. Dad did say, after I asked, “he was doing ok”. Those were the only words I got from him in my 45-minute visit. As much as my kid side wants to believe dad was still trying to protect me from his pain, I’m almost entirely positive he would have said the same thing to you. Part of the reason dad was so successful at his job was because he was 10 times smarter than everyone else. He knows that if he talks about pain or discomfort that he will get medical attention, dad is more like a dog, he would rather just go off on his own when the time is right than receive treatment. Dad loves dogs!!!
For my 45-minute visit dad was spending all his energy on twisting and pulling in an attempt to get himself out of bed, just like with Tyler. As a well educated so called e-patient, I would have gladly helped dad out but he no longer has the necessary strength to stand up by himself without assistance. No only that, I don’t have the training to transfer him into his wheelchair. It is easy for me to say that now but the truth was dad’s look and condition had taken me aback too. I was not caregiver Alan at that moment; I was the oldest son Alan seeing his dad at a new level of weakness and vulnerability. As my brother and I have found, more often than not, our care-giving hat does not always want to work with our “we want dad back” hats.
Like Tyler, my mental health had to leave after 45 minutes. I talked to the front desk on my way out and they told me it was about time for his methadone shoot anyway which usually and hopefully makes him sleep. I say hopefully because I’m sure dad was only a few minutes from becoming angry dad which is still a profoundly scary experience for the help and us despite is declining health.
After leaving dad, I went to pick up some prescriptions for myself then stopped by dad’s house to check in on everything and pick up the mail. We still haven’t decided what to do with his house, it needs work, but neither my bro nor I have the strength or will to tackle that project right now. It will have to wait.
After stopping by Hugo’s Deli for dinner, I arrived home around 6:15pm completely exhausted and ready for bed. While eating my sandwich, the phone rang. It was dad’s facility calling to inform me that at 5:40pm dad was finally successful at pulling himself out of bed. Due to his weakness though, he actually fell out of bed instead of getting out like you and I would. The nurse reported that they had thoroughly examined dad and found no new bruising, injuries, or any other troubling signs of a problem from the fall. Dad was back in bed and seemingly calmer.
As a caregiver, my first reaction should have been worry for dad’s safety. It wasn’t though. I was actually proud of dad for continuing his fight to get himself out of bed for at least 4 straight hours. When was the last time you fought for your own quality of life for 4 straight hours?
Dad is still one tough dude!
As an educated epatient, I understand the facility’s reasoning for keeping dad in bed. They can’t have someone with him 24/7 without charging Tyler and I a mountain load of dollars. I also know that a small fall, bump, or sitting or sleeping in an awkward position could be instantly fatal in dad’s current condition. Their job is to prevent such things from happening so nature can do its thing. Per dads will he does not want any effort to extend his life, just let nature do it is his wish. That said, as his oldest son and not his designated caregiver, I am proud of dad for what he accomplished. He wanted out of his bed and no one was going to stop him. Healthcare needs a reminder that it’s our body, time, and health. Dad might not know who Tyler and I are, but he is still leading by example I like to believe!