serendipity

Playing Doctor

My mother's recent hospital stay, for a severe allergic reaction and medication interaction, was nothing short of terrifying. She was so far from acting like herself that at times I wondered if she would ever be herself again. Things are better now, but she is still not what I would call Mom 1.0. She's more like Mom .9

Almost Mom. Not quite Mom.

The experience, though not over, has already taught me some valuable lessons about how to care for someone who cannot care for herself, a lesson I will no doubt be honing into a skill over time. My parents, my children and I, we are all of us getting older. So in no particular order, this is what I've learned so far:

1. Show up at the hospital every day. With HIPPA laws and shift changes, this is the only way you will truly know what's going on. Nurses and doctors will tell you everything they know face to face, and very little over the phone. 

2. Show up at the hospital every day. It's the only way you'll be able to tell hospital staff critical information about your loved one and know that it is actually shared with the right people - because you shared it.  Hospital care is a deadly game of telephone: you tell the doctor, they tell the nurse, the nurse tells the assistant and the physical therapist and so on...TODAY. Then, tomorrow, when there is a new doctor, new nurse, new assistant, new therapist, etc., they learn everything they know from the chart. So if that person is busy, or interrupted or simply scanning the chart, they might miss something important, like oxygen.

My mother needs oxygen 24/7. It's not recommended, it's not simply a good idea, it's mandatory. But several times - including today when she's been in the hospital for a week -  I entered her room to find that the nurse/assistant/therapist/whathaveyou didn't know that oxygen was required and had let her fall asleep, do physical therapy or GO FOR A WALK without oxygen. And sometimes she can do this and still have reasonable vital signs, other times her pulse ox measurement plummets from 95 to 80. This can lead to hypoxia and is very dangerous. 

Show up so you can play the hospital telephone game from scratch, with new players, every day.

3. Show up at the hospital every day, but don't stay there all day nor all night. Unless you have a real reason to believe she might die, you need to treat this care like a marathon, not a sprint. Being in the hospital, waiting for something to happen, is both physically tiring and emotionally draining. You need your strength to last so you can successfully take care of everyone and this includes you. Don't make yourself a prisoner of the hospital. You are free to go outside, eat non-cafeteria food and smell the proverbial roses. Which leads me to:

4. Take care of yourself. You already had a lot of responsibilities before this happened and you are probably feeling the weight of obligations left suddenly unattended while you protect her from the hospital. Eat well, sleep, go home and hug your children, dog, cat, or fish, super tight. Watch something you like on Netflix and for a good, long moment, pause to appreciate the fact that this is not happening to you, and to appreciate your good health. You are not in the hospital because you are ill, but you can make yourself ill if you insist on staying there night after night.

You are no good to anyone if you make yourself sick by over-caring for someone. As much as you feel like you have to stay with her all of the time, to make sure that everyone knows everything they should all of the time, you can't. There is usually a whiteboard in the room, use it to put your phone number and critical information like "Needs O2 24/7."

5. Trust the hospital to do the right thing. No, they aren't perfect and yes you do sometimes need to step in, to make decisions and share information and you're doing a great job of that. But you also need to realize that these caregivers are some of the smartest and most caring people you're going to find anywhere. Most of them are sincerely nice and all of them are working to make her better. Trust that they can do so.

6. Keep a diary of her symptoms and tests. After days of hospitalization, it can get hard to track what's important. If eating is an issue, log it. She's not sleeping? While that can be normal in hospitals, log that too.

7. Use the buddy system. If your sibling, like mine, lives far away, use Skype or FaceTime to include them. My sister and I did many meetings with Mom's care staff as a team. It made my sister feel less helpless, and me less alone. You may not realize it, but you need help to get through this in one piece. Accept the help that's offered and ask for it if it's not.

8. Be prepared for setbacks. People get better and then sometimes relapse. The relapse doesn't always mean they are getting worse, it just means they need more time to get better. Stay positive and strive for an even keel. This is a bumpy ride we're on and there can be ups and downs and sharp, unexpected turns.

9. Try not to read too much into any particular test result or even what happens on any given day. We're looking for trends, markers that show we're making progress in the right direction or that we're not getting anywhere. One of my mother's doctors explained the concept to me like this "Don't just do something, stand there!" The idea being that the feeling we should always be doing something, trying something to make something (anything?) happen, is ingrained into the American psyche. But the phrase "Time heals all wounds" is not just for heartbreak, it's also for being sick. And if you constantly do something (anything?), you interfere with Time As Healer. Worse, if you keep doing stuff, you may be interfering with the stuff you just did. Sometimes you just have to stand there and do nothing. 

10. Be sure to keep an eye on the big picture. If her test results are better overall, don't let the fact that she is still sick take away your optimism.

11. Celebrate the little improvements. 

12. There will be days when you just can't go to the hospital. Can't take another day. Need to run away or scream or have a massage or retail therapy or pound some sand. Do it.

This is hard work you're taking on. I know it feels like you're just sitting in the hospital, waiting for something to happen, waiting for the doctor to come, waiting for the nurse, waiting for lunch, waiting for her fever to drop. But it's more than that. Your butt may be in a chair, but your brain is pacing the floor. Cut yourself some slack. Yes you have to go to the hospital every day - unless you can send your sister/brother/trusted person who knows the critical information that must be shared. But you don't have to stay there. And as I said before, you are no good to anyone if you are at the end of your rope. So go for a half hour, then run away and do something that makes you happy. It's okay. She will be okay. You are not singlehandedly responsible for what happens next. She will not die because she woke up and you were not in the room. No, she won't.

And if pounding sand and all that jazz isn't enough help, find someone to talk to. This burden is too big to carry alone. If you don't have a buddy, ask the hospital for help. It doesn't mean you're crazy or failing, it means that what you're doing is hard. You need and deserve support. And since everyone else is thinking about the person in the bed, you have to make sure that you get the help you need yourself. We have a lesson in our house called "saving your own life." It means doing whatever you have to do to help yourself, instead of waiting for someone to notice you need help.

Remember that you can't do your job if you are overwrought and spent. This care you are giving, it is a good thing and you are a good person for doing it. Stop being hard on yourself because the rest of us think you are awesome. Eat something and get some sleep, you need your strength. 

Because tomorrow you're going to have to wake up and do it all again.

Flutter

She sits in bed and scratches her shoulder. Scratches her face. The top of her head. Her knee. Her ankle. That hard-to-reach place between her shoulder blades. Ah, that's it. Everything itches.

A nurse says "Try not to itch that." I know she's just trying to be nice, to be supportive in that higher-than-dogs-can-hear-I'm-talking-to-an-impaired-person voice, but all I can think is that she's using the wrong word. Itching is the symptom, scratching is the thing my mother is not supposed to do. 

And if she were herself, my mother would not be able to resist correcting the nurse.

If she were herself.

But she is not herself. She is a shadow, a missing person. There she sits, scratching her itching skin, not actually present.

Where did she go?

On Monday she was fine.

On Tuesday she crashed the car.

On Wednesday she asked for help.

On Thursday she was admitted.

The doctors are mystified. Her symptoms do not add up and they are desperate for some easy math. A common denominator they can use to justify the wide array of disparate symptoms. Hives, but not hives. Caused by what, we don't know. Ameliorated only somewhat by strong doses of antihistamines. Hives that have been around for a week now. Hives that should go away but aren't. Let's call that Mystery Number 1. It's a physical mystery which everyone likes because it feels tangible. You can touch it but don't, 'cause it itches. And she will want to SCRATCH that. 

My sister and I are concerned about mystery number 1, but it's not what tortures us. We know the itching is awful, but it won't last. It will go away eventually, the skin will calm, the welts will vanish, the red skin will fade to pink, then white. No, what concerns us is our mother's mind, and why it has  suddenly gone AWOL.

Every time my mother wakes up she asks me where she is. She is surprised and dismayed to rediscover that she is in the hospital. How long has she been there? Three days. "No!" Yes. And then she forgets all over again. She awakes with a start and asks "where am I?"

Today she told me that she needed new clothes for the impending car ride from her hospital bed to the MRI room. We'll be taking the turnpike. She's worried that everyone in the hospital has seen these clothes already and will know they are the same ones she was wearing when she arrived at the hospital. She wants to look presentable. She wants her comb. 

She's talking to dead people. 

She'll start a sentence and be 100% herself. "I dreamt I was in school and I had to write a 100 page paper..." Then her voice changes, drops pitch and she'll start to mumble, unintelligibly. I wait, hoping for a return to lucidity. Sometimes she snaps to and sometimes she falls asleep, mid-sentence. Yesterday she fell asleep with a fork and knife in her hands. 

Her nurses keep asking me "Is this her baseline?" This is code for "is she always this disoriented?" No she is not. Please write this down: this confusion, this short-term memory loss, this falling asleep while talking, THIS is part of the problem. This is Mystery Number 2. But the nurses aren't good at the telephone game, and I have to tell each one in turn. No she is not normally confused, she is smarter than you; she proof-reads the New York Times and finds mistakes. She could kick your ass at Scrabble.

This is what you have to fix.

You have to bring my mother back.

When she falls asleep that way, so suddenly, her eyes roll back a little and her eyelids flutter gently, in the way I remember my children doing when they were so tired that sleep literally had to overcome them. My mother has been sleeping for days and she is still so tired. She literally cannot stay awake. Even though she wants to. Not even long enough to finish a sentence.

Every time she wakes up it's Groundhog Day. "You're in the hospital, mom. You've been here since Thursday. I don't know when you can go home. Not yet."

Not yet.