My dad died this year (2017), on March 20th at age 71. Just a few months beforehand, my best friend and I saw him at Christmas and had been actively convincing him to go to the hospital due to his massive ascites (fluid buildup in the abdomen). His abdomen was gigantic and he could barely move. He had had essentially a lifetime of heavy drinking and smoking, so we thought that likely had to do with it.
It was clear that when we saw him at Christmas he was scared, because right after greeting him he immediately began talking about his symptoms with my best friend, who is a medical student. She had guessed that many of the major symptoms he was experiencing were due to liver failure, and she ended up being correct. However neither of us felt he was in the late stages of anything.
In January, he finally went to the hospital. It took him a long time to get himself there because he hated doctors and hospitals. I knew it wasn’t going to be good, but I didn’t expect that he would be dead just two months later. He didn’t tell anyone what hospital he had gone to, so when I didn’t hear from him a few days later, I called every hospital in the state asking if they had him there. I finally found him, and had learned that he had had TWO heart attacks in the hospital and was in the ICU.
I freaked out. So much was going through my head at this time. I didn’t yet know what kind of condition this had left my dad in exactly, and what kinds of problems would be permanent vs. fixable. Additionally, my dad didn’t have a good relationship with many members of the family, and he was also often too stubborn to reach out and make amends (as many people can be). I began to realize that if he needed care, I would likely end up being the primary person to care for him.
And I’ll be honest — the idea of this was daunting. I was 32 years old, full-time job, not living in the state, not having tons of money…and even if it wasn’t said, I initially got the feeling that instead of people offering to help, they were pushing me to do everything on my own and didn’t want to be involved for various reasons.
I flew down to where he lived as soon as I could to see him. The minute I saw him, I could barely hold back the tears. At Christmas he had he looked as he always did, despite the ascites. There in the hospital, he looked like he had aged 20+ years. Literally. He looked about 95 years old. He was frail and his eyes seemed to be bulging out of his head. He was sound of mind, yet somehow also much more vague than usual.
However at that moment, any overwhelm, fear, hesitance, whatever else it might be, was overridden by the glaring fact that my father was in an extremely vulnerable situation, essentially alone. Nothing else mattered. He desperately needed help. How was he going to function on his own?
I talked to one of his doctors who told me everything about his condition. He had multiple organs failing, they said he had a few weeks to a few months to live, and he was on a number of medications (primarily diuretics). The doctor mentioned to me afterwards, “this is really a lot to be on your plate at 32 years old.” I nodded in agreement. After that point in time I was continued to be repeatedly asked by doctors, nurses, hospice team members, and so on, “There really isn’t anyone else who is going to be helping you?” I shrugged. I wasn’t sure. All I knew was that if I were going back home at any point soon in the future, I’d have to have a caregiver to take my place. How was I going to afford that?
Luckily, I was able to stay in the state and care for him in his last months as best I could, while juggling full-time work and trying to make it work with little money. It was definitely difficult. But during and after the experience, you see the sweetness in it, you learn things, you grow immensely from the experience, and best of all, you become thankful for it.
In an attempt to paint a picture of what it was like, here are the major things I learned and experienced…
- These types of experiences show you people’s true colors, and what people are really made of. Because it is literally, a life or death experience. You will see who is able to put things behind them and step up to the plate to help, and who isn’t.
- While the above can be some cause for disappointment, it was also incredible to see who did step up to the plate that I never imagined would. Friends messaging me asking if there’s any way they could help, that they would do anything. People who offered to help me clean his house, to help me cook meals, who gave me rides and lent me transportation. It was truly incredible. My cousin was a godsend; he helped me many-a-time on a whim when my dad had had a fall or some other emergency. I am forever thankful for that because without them, it would have been infinitely harder.
- I learned the true nature of hospice teams — when to use them and when not to, as well as the confusion in what part they serve. They are actually fairly limited in what they can do. They are there to make the end comfortable and can easily get you medications you need and offer nurse visits once or twice per week. If you need someone to help care for your loved one, they need a separate caregiver, or two, or three. I tried to get a nurse or even an aide from the hospice team to come visit my father at his home more often, such as 4-5 days per week at least even just to have an extra person to check on him for a few minutes. They told us they couldn’t approve that (sometimes they can!) because he wasn’t “actively dying.” I said what, then, qualifies as actively dying? How do you measure that? In fact, after I had that conversation with them, he ended up dying a couple weeks later. This frustrated me.
- I learned about how to make a house accessible for those who are handicapped. Some of the equipment you can buy, and modifications you can make on your own.
- You learn that you have to really envision their situation in order to understand their world in specific ways. What exactly might happen when they try to walk to the bathroom? Do they need grab bars on the walls? What pathway will they use? Are there things in the way to try to get to it? Do they have pain when they try to sit down to use the toilet? How can they get into the shower, if they have some of their own mobility? Where are the hazards and what in the house has to be altered? Who can they contact if there is an emergency and no one is home, and how are they going to do it if they can’t get to the phone?
- You will sometimes come across people in the medical/health profession who can seem insensitive to someone’s suffering (i.e. little empathy) just because they have no personal connection to them. They are just another patient, and the professional is just doing their job. Lack of empathy is a common problem and I don’t mean to pass blame, but it can be frustrating when you’re in such a difficult situation and you don’t feel they are truly empathetic towards it.
- You witness many people’s attitudes towards the elderly in this country — especially in places like rehab or assisted living centers. You witness how some places really just are places for people to go and die, that elderly/handicapped people are sometimes not seen as people that have any life left, but just a set of problems — in my dad’s words. It’s very unfortunately true, and something that really needs to somehow be worked on and changed.
- Then at other times, you might come across those in the medical profession who are incredibly empathetic and go the extra mile to help when they see such a vulnerable situation, and those people are were like angels to me at that time. They might not realize how much their efforts are appreciated.
- You learn what it feels like to be completely focused on someone else’s life, someone who is very reliant on you. Similar I imagine to those who have kids. I couldn’t go out to dinner or do anything fun without my mind being completely occupied with thoughts on how he was doing, if he was okay, if he had fallen, and so on.
- Every time I got a phone call from him while working my heart would drop with stress, wondering if there was an emergency or a problem; and every morning upon waking up I would immediately have another surge of stress, wondering if he had been okay through the night.
- I learned an insane amount about Medicare, Medicaid, Rehab centers, assisted living centers, home care assistance programs, who qualifies for Veterans benefits and how they work.
- I learned about what equipment you can get covered through Medicare and delivered straight to their own home. My dad’s hospital bed with a trapeze was a life saver and allowed him to get out of bed on his own.
- I learned that you can call the fire department when someone falls and just tell them you need lifting assistance, but no transportation to the hospital, and they are awesome and very helpful (we had to do this about 6 times).
- I learned what it feels like to have to be the strong one even while you’re dying a little inside at any given moment, or witnessing things that just wrench your heart out.
- Funerals are expensive.
Then, the scenario after your loved one dies is a whole other story and process of learning. It’s insane. I told my friend if you are a child and your parents did not leave a will, there should be an entire manual written about rules on what you should or should not do…with the house, with their bills, learning about the probate process (which is a process that often happens when a will is not present, and thus the parent’s belongings are split up among heirs equally by the courts), when probate is needed and when it’s not, etc. I mean really. There needs to be more education on this, because there is so much about the way things SHOULD be done and it feels like you are expected to just know. If you are nearing or are in this situation, please educate yourself on this matter. It becomes pretty important. But this is a topic for a whole new blog post.
I hope if anything you took something away from this article, but the most important point I can make is that in the end, it is a wonderful experience, and despite the difficult times, I look back on it and feel it was a privilege and a relief to know that my father was able to feel cared for in his last months on this earth. And that’s all that matters. It’s all I could have asked for.