Imagine you go to work one day, not feeling so well. Suddenly, you are weak, clammy, having difficulty speaking. You can’t stand up. You are terrified.
Your coworkers, frightened and concerned about you, immediately call for the paramedics and wait with you. . .
A few weeks later, you find yourself in a hospital bed in a rehab facility.
The previous two weeks are a haze, you aren’t really sure what has happened to you.
The left side of your body isn’t working.
You know what you want to say but can’t get it out clearly.
And you realize you have a tube in your stomach. What the hell???
A nurse comes in with an armload of supplies and starts talking to you.
Luckily, this is one of the nurses that will try to understand what you are saying in return.
You say, “I’m so thirsty.”
And the nurse says, “I’m so sorry but everything has to go in your tube right now. You aren’t able to swallow and would choke. I can swab your mouth with lemon swabs though.”
She is trying to help. You hate lemon.
As you watch and the nurse talks to you, she puts medication – you weren’t on any two weeks ago – and the can of a brown liquid she calls your food into the tube. She looks you over and covers you with a blanket and says she’ll be checking on you.
Shortly after she leaves, your family comes in to visit.
They all hug you and crowd around your bed. You tell them that you are so so thirsty. Your daughter tells you that you can’t have water until the speech therapist says it is safe. She too offers the swab – as she has been taught to do.
Damn. It.
You are so frustrated.
Your children, your parents, and your siblings are all saying the same thing. And all telling you what to do it seems.
And, when you get them to tell you what is going on, they are talking about physical therapy and insurance and the “first 30 days” and you are so confused.
What about your dog? Your house? Your job?
And what about this infernal tube?
And when can you get up?
Surely you won’t be in this bed in this place forever?
You start to panic. You want to scream. You can’t. You want to leave. You can’t. . .
Many of my patients come to me this way.
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This past weekend at work was a difficult one for me, physically, mentally, and emotionally.
I was – and am still – flaring horribly so my pain level was ridiculous.
While I was trying to work through it, I was at full capacity and running all over the place.
I was also working with a patient who just absolutely rips my heart out.
He is one of the many people who went suddenly from healthy and independent to unable to walk and with a feeding tube. And he is miserable. He begged for water – that I can’t give him or it would kill him – all weekend. I shed some tears over this because it just kills me.
His child – who has suddenly been put in the place of making medical decisions for him – came by often. And he got so (understandably) frustrated and angry with both of us. And we both cried together when she was talking to me alone about it because my heart just breaks for her too.
There are just so many challenges and so much heartache in this situation and all I can do is offer my best nursing care and all of my heart to comfort them both.
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After I got home and got some rest from the weekend, I realized that this is something we need to talk more about as a society. I also realized that I need to talk to all of you about it here.
Unfortunately, the scenario at the beginning of my post happens more often than any of us would like to think about. Because we don’t want to consider it, we don’t take any of the actions we really should.
First, as you hear from me all of the time, please focus on prevention.
Go to your primary care doctor – I don’t give a damn if you hate it. Everybody hates it. – and stay on top of your blood pressure and lipids. Take your meds, of course, and check your blood sugar.
Eat well – real foods (think veggies) – and make sure you are at least walking several times a week if you are physically able. Try to sleep like a normal human (I am the worst about this one).
In short, do the things you already know you need to be doing, because, if you are too busy to do them, your body may force you to take more time off than you ever wanted to.
Second, even though it is unpleasant, think about how you would want a medical crisis, such as a stroke, handled, and talk to your spouse or next of kin about it. Consider putting everything in writing, especially having a living will – to ensure you don’t end up with things you don’t want, should you ever face a catastrophic illness.
And, finally, let’s talk about my primary inspiration for this post: my people.
Every time I look into a patient’s eyes, begging to be understood when they know what they want to say but can’t get it out, it just breaks my heart.
When someone begs for water and I can’t give it to them, I want to just sit in the floor and cry.
When they have months and months of therapy ahead of them and they are so overwhelmed and their whole life changed in a minute and I can’t fix it, it really hurts.
Still, I do everything I possibly can for each and every one of them and for their family members as they struggle as well and I am able to sleep at the end of my long stretches of work knowing I have given my all.
What I want to say to non-medical people is this: don’t run.
If you find yourself in a situation where a family member or close friend is in this condition, I know it’s hard to face. I understand it’s really painful to see them unable to speak to you like they usually do or get out of bed but GO to them anyway. They need you more than ever – and their caregivers REALLY need your love and support as well. I can be there for them but I can only do so much and it is incredibly hurtful when loved ones don’t come around.
And, in the big picture, as a community, families are experiencing these kinds of things every day. And when insurance days run out, they are expected to take their family member home, more or less ready or not (it’s not fair – it’s the insurance business).
At that point, it would be amazing if church and civic groups would step up and lend a hand with meals and extra help with their loved one. It is a huge need I see every day. They need SO MUCH.
I believe with all of my heart that people want to do the right things for themselves and others if they are given the chance.
So now that you know about one of the big big things in my little corner of the world, please do the right thing. Please take care of yourself. And, God forbid you should be faced with a loved one in this situation, please stay close by and take care of each other.
the autoimmune hippie. 