*Forewarning, this will be a long blog. If you need a TL:DR- Learn CPR, Have a Living will/DNR, Make arrangements for your last wishes, because your loved ones will need you to*
Oh man. This won't be an easy blog to write.
Then why write it, Kitty? I mean, you're not paid for this. It's not as if you have droves of fans hanging on your every word.
True. But the reason I started writing was as a catharsis. A way to get these things out in a (mostly) organized fashion. This is collection of my fears, frustrations and often pedantic ramblings. A way to cope with my drastically shifting reality.
And brother let me tell you, this shift is gigantic. It's time to let this out into the ether and hope in some small way, it can either provide me some peace or help someone else find theirs.
Sunday, January 24th was a lazy morning. One of those rare days where you've got nothing on your calendar. The kids were at their dad's house and I was still recovering from a fall that had badly sprained my knee. The plan was a quiet day with my leg up on some cushions and some heroic deeds in Thedas. (I've been playing Dragon Age: Inquisition)
I was just shuffling through my kitchen preparing a very late breakfast for me and the hubby when my baby sister popped up on my phone. This time instead of her usual friendly greeting, I was met with mostly unintelligible wailing. My sister is not a crier. This was bad. I could barely make out what she was trying to tell me. Something about.....mom.....heart stopping.....ambulance....I tried to calm her. I told her I'd find out all the details and call her back.
Everything stopped. I was extremely worried but I went into a stone calm. It was time for action. I eventually found where the helicopter from Pahrump (the small town she lived in, about 140 miles from Vegas) would be taking my mom and I went.
I waited at that hospital for what seemed like an eternity. Finally, they told me she was there. I went back. I expected to find my mom, tired, grumpy that we had made such a big fuss, but ok. That was not what I got. She was sedated, she had a ventilator and she wasn't doing well. It was a waiting game now.
That waiting game evolved into a week long waking nightmare. My sisters both came from their homes out of town. It is one of the worst things we have ever faced.
I've always been a terminal optimist. I was SURE that she'd wake up, be super pissed at us for all the trouble and life would go on. We needed her too much for her to go.
It was Mom's wish that she not be allowed to be kept alive, dependent on machines. Eventually it became clear that she was not going to recover, and we moved her a hospice. On February 1st, 2016, just a few hours after the last time I had gone to hospice to kiss her and tell her I love her, she passed away. She never felt any pain. It's the only comfort in any of this that I have.
Since then it has been an up and down ride. Kind of like being on a small boat. I'll be going along and then suddenly the waves will dip and some small thing will remind me she is gone. Then the crying. For some reason, despite watching many families go through this in my job, I imagined I'd cry inconsolably for a week or two and then slowly start to feel better. Instead, for me at least, it has been a lot like normal life, until there is some reminder that she is not there. I'm doing normal things. Trying to keep my normal routine. Then I'll get to the point in my normal routine where I would call her, or text her something. Then it comes rushing back. Then the pain is fresh again. I'm told that's how all this works.
The point of this isn't to simply recount the details of my loss.
I want to also express a few things that have been festering.
First and foremost, learn CPR. Learn it, know it like the back of your freaking hand, know how to do it properly, and use it. My mother could have had a different outcome had anyone in the dollar store where she had collapsed given her immediate CPR. She waited with no blood flow to her brain for at least 10 minutes before the ambulance arrived to the rural area she lived in.
But..but..Kitty, what if they have a DNR, what if they don't want CPR?
Unless they are wearing something clear and visible that says that, or someone tells you not to do it, you are protected. An unconscious victim at the scene of an emergency implies consent. Do CPR. Let them be pissed off at you, let them sue you, you are protected. The Good Samaritan Law in general states:
"Any person who in good faith renders emergency care, without remuneration or expectation of remuneration, at the scene of an accident or emergency to the victim of the accident or emergency shall not be liable for any civil damages resulting from the persons acts or omission, except for such damages as may result from the persons gross negligence or wanton acts or omissions."
Basically, if you know CPR, render emergency care in good faith and with no intention of being paid or rewarded you are protected. It makes me absolutely sick to know that there are people out there that won't learn CPR simply because they don't want to risk being sued. Furthermore, there are employers that will fire you if you render aid to a customer or coworker, because they don't want the liability.
Integrity is doing what is right because it is right. Even if no one else knows you could have helped, you would know. And if you could help and didn't, I would hope any small shred of integrity you had would haunt you the rest of your days for your inaction.
Secondly, if you have specific wishes concerning life support, what constitutes acceptable quality of life after accident or injury, or who speaks for you, should you be incapacitated,
WRITE IT OUT IN A LEGAL DOCUMENT!!!!!!
Guess what y'all, humans by and large lead with our hearts before our minds.
My mother had told my sisters that she didn't want to live if she had any diminished quality of life. I didn't not have this conversation with her. And even if she had told me that, what exactly is a diminished quality of life?
That is a HUGE gray area. Some would argue that my current state constitutes a diminished quality of life. I can't work, I sometimes can barely get out of bed. I live almost every single day of my life in physical pain. Pain that some people would not choose to endure. At this very moment, my arms feel like they are on fire and my fingertips are throbbing with each key stroke. The lifestyle I was used to living is certainly diminished compared to what I had before Scleroderma. Does that clear me to end my life? I don't think for a minute it does, I have people who need me, I am still capable of adding to society and my family, even if it isn't the way I did before. I don't feel diminished in the least. I also have hope that at some point we can find the magic bullet to change my daily life.
Furthermore, I have cared for people who have had no control over their body aside from their mind and their smile. They were not diminished in their eyes. I had to bathe them, lift them, dress them, wipe their face. They had tubes to feed them and tubes to help them breathe. But they also had beautiful smiles, laughter and joy. To them, the things that mattered had not diminished in the least.
I understand that to each person, that is a choice, and you have a right to that choice. I believe we should die with our dignity intact. We should live a meaningful life. So, if you know for sure what you can and cannot endure, what you consider a life worth living, write it down. Don't just tell your spouse, partner, children, ect. WRITE IT DOWN.
Because when you are standing there, watching a chunk of your heart hanging on the precipice of life or death, no matter what you know, no matter how much you want to respect their wishes, you will want to hang on to them more. Your loved ones will feel the same way. It's selfish. But all of us are capable of selfishness when it comes to facing a loss like that.
My Dad always says if he ever collapses clutching his chest, we are to wait 10 minutes then dial 912. I can only thank every power in the universe that if that happens I will most likely be 2000 miles away. Because I don't think I could do it. I know what he wants. He has the right to what he wants. But my heart will die that day. Just like it did on February 1st, when I lost my Mommy. He knows that. So he is going to make sure he has all of his wishes, including his DNR, written out and finalized. So we don't ever have to make that choice.
Finally, as morbid as this sounds, set up your final arrangements. I know none of us wants to think about dying. All of our instincts are built towards survival. But I hate to be the one that breaks this to you kiddies, none of us survives. All of us will die. Every single one of us. You. Me. Our best friends. Everyone. Eventually. And we don't get the luxury of knowing when or how in most cases.
Funeral homes are businesses, just like any other. As much as we want to believe that no one would ever take advantage of the sadness, mourning and sentimentality of a grieving family, guess what? They don't work for free. And again we run up against that emotional attachment issue if you leave it your loved ones.
We walked into the funeral home knowing my mom wanted a simple cremation, nothing more. But I'll be damned if they didn't try to talk us into having her buried in the Veteran's cemetery, "so we would have a place to visit her". We had told him even before our appointment what we wanted, and still he tried to talk us into something more expensive. Even the simple cremation wasn't simple, there are choices of what kind of vessel for the cremation itself, what kind of vessel for after, and the list goes on.
There are services and ways that you can not only choose what you would like done when you pass, but you can prepay, so that your family doesn't have to. Do this.
Whether or not your family honors the kind of service, or lack thereof, you want after you pass, you have very little control over. Whether or not you know if they honored your wishes or not, is a matter of debate that is certainly not a debate to have here.
But you can take care of some of the decisions and cost of your final preparations for the people you leave behind.
Giving them more space to do what they will really need at that moment, which is to learn to go on without you.
I know this was long, and not particularly cheerful. But I feel it is important. Not just for me, although it is good to have gotten this written out and off my mind in a semi organized fashion, but maybe for someone else.
If it helped you, I'm glad. If it made you think, I'm happy. If it bored you to tears, remember, no one is paying me to write this.
