Low Sodium

On the Early-Bird low sodium menu this evening is homemade pizza- I kneaded the dough myself.

I considered myself a pretty healthy cook until I began consciously cooking low sodium for my dad. But I'm adjusting and getting more and more confident with each meal.

Here's what I have learned so far-

1. Plan ahead- google recipes, shop for ingredients and start cooking early.

2. Staples that I used to have on hand (chicken stock, bread crumbs, cream soups, sauces, spice mixes, etc)= super salty (even the "low sodium" versions). You can get acceptable replacements at specialty grocery stores or in the organic section, but the small stores up north don't have much to offer. However, all of those things can be made (think- 1940s housewife in a frilly apron). Google it.

3. Make a menu in advance (see #1- plan ahead) so that you can make all of those "staple items" in advance.

4. Salt, butter, sugar, grease, preservatives- those are all the things that make everything taste good. The healthy version of everything tastes slightly different, but you get used to it.

So far I've succeeded with chili, chicken soup (noodle and rice), fettuccine alfredo, spaghetti and meatballs, fish, steak, roast chicken with stuffing, and today- PIZZA!

Customer Service

From now on, I only want to interact with people who have been trained in the art of customer service. There is nothing better than good customer service.

This morning I was on my 8th phone call in what has become a battle to get my dad's hospital records transfered to his primary care doctor. When my dad got out of the hospital, I asked how what we had to do to have the records transfered. "Oh it's automatic, don't worry, we'll get them there."

Uh huh.

When I called his doctor a week after he was released, the records weren't there. So I filled out a request form. And then I called back a few days later. And then I made 6 additional calls to try to straighten it out. It's a simple thing that I assume they do on a regular basis.

Finally this morning I was ready to burst into tears of frustration. I have done everything right. I am being as thorough as humanly possible. But it wasn't working and no one could help me. When I was transfered to the supervisor of medical records at the hospital, I was mentally preparing myself to be calm- I know it wasn't her fault. But my frustration got the best of me and as soon as I started talking to her, it turned into a two minute rant without pause for breath or to let her get a word in edgewise. I could hear myself and I knew I sounded hysterical. His appointment is tomorrow, so I also knew there was really nothing she could do to get the records there, but I couldn't stop my words from spewing all over her.

But this woman had obviously been trained in customer service and when I finally stopped speaking, she was prepared. First she apologized and then she empathized, and even though or maybe because I knew her technique, I immediately calmed down. Then she told me she was looking into it, giving me specific information that told me she was actually looking into it. And then she told me she would personally call the clinic and make she the records arrived via fax and that she would work out getting his scans transfered. She gave me her name, phone number and pager number and she told me she would call me back later to follow up. And later, she did call me back and somehow, the office had the records and my dad's doctor's nurse was personally looking at them to prepare for the appointment tomorrow. And I could have cried out of relief and appreciation.

There is nothing worse than having a problem and feeling powerless to fix it. And there is nothing better than when you finally find the person who has the power and can fix it for you.

Single Mom

My dad and I have been at camp for almost 2 weeks now and he's getting stronger every day. He still sleeps a lot and is limited in the things he can do, but we can both see the improvement, so that's the most important thing.

I'm happy to be here for my dad and I'm thankful for the ability to be here. He needs someone to be with him, and I think recovering in his own home is good for him, so my being here is necessary. And I will be here as long as he needs me (and probably longer than that since camp is right around the corner and I would be here for that regardless of his health).

As I said, I'm happy to be here for him. But I feel like I'm a single mom. Actually, I feel like a single mom from the 50s, or a single mom on the prairie or a poor single mom. Let me explain.

For the first week or so, my dad could do very little. I helped him put on his socks, told him when to nap, when to wake up, hooked up his portable oxygen tank and helped him walk to the mailbox and back. I pretty much never let him out of my sight, except to sleep, but I found that I slept much lighter than usual, waking up to every little sound in the house. He seemed so fragile and I was worried all the time. Our bedrooms share a wall, so I heard every time he tossed and turned.

The first week home was a sleep deprived blur of laundry, cooking, cleaning, and trying to keep him on a schedule. Wake up, get him dressed, make him breakfast, clean up breakfast, convince him to take a short walk, he naps while I cook or clean or do some work, wake him up from nap, feed him lunch, clean up lunch, another walk, make dinner, clean up dinner, he goes to bed and I crash onto the couch wondering where the day went as I had little to really show for it.

In the hospital, he gained about 45 pounds of excess fluid on his legs and abdomen (his liver wasn't able to keep up with filtering it out) and so he needs to be on a low sodium diet to prevent any more fluid retention. Low sodium- no big deal- I'm a healthy cook... um, wrong. I had NO idea how much salt is in EVERYTHING. Canned peas, spaghetti sauce, chicken broth, tortillas... The first trip to the grocery store took twice as long as usual because everything I picked up was too salty.

So now I cook pretty much everything from scratch because it's much easier to cut the salt out, however, I literally cook all day every day. One of the first days home, my dad walked into the kitchen and asked, "what are you making?" because there was a pot on the stove (chicken stock), a pan on the stove (cream of mushroom soup), a loaf of bread drying on the counter (stuffing and also bread crumbs) and none of it was actual dinner, just things I would usually buy at the store to use in meals I cook. I feel like I'm an apron away from being in 1950 or little house on the prairie. If feel like pretty soon I'm going to start mending socks and washing clothes in the lake.

Since the first week, my dad has been steadily improving and is getting much stronger. He's now dressing himself and keeping himself busy between naps. I'm getting more and more creative in the kitchen, running every day, playing with the puppies, getting tons of work done- all while balancing 3 or 4 pots and pans on the stove at once.

But then the day ends and I live in the woods. With no tv. And not much to do. So in addition to being a single mom, I'm apparently a poor single mom. It turns out living at camp is only really fun when you're getting ready for summer and lead staff are here and it's warm outside and every day is a sprint to get everything done in time for the adventure that awaits. But with a month of single motherhood ahead and snow in the forecast for tomorrow (despite it being April 19!), I'm feeling crabby.

Okay, okay, I'm having a little pity party for myself because I miss having a boyfriend, going out for sushi, drinking wine and devoting all of my free time to myself. I'm not actually a single mom. And with the amount of online shopping I do, it's probably sort of offensive to actual poor single moms to compare my bummer week with their actual lives.

Being able to help my dad during this time is a privilege. I know he will not be here forever and I will look back on this time and be very thankful for having spent it with him. And I'm getting really good at cooking. And my dogs are happy play freely in the woods all day. So I should probably stop whining and be thankful for the good things in life.

Education Round 2

For my final paper for my grad school class, I have to write an 8 page paper- an in depth look at an organization (delving into a variety of different aspects of the nonprofit).

When I looked at the full description of the paper, I couldn't help but this how beneficial it would be to study and analyze camp. My time is spent on day to day operations, there's not really time left over to do this sort of study of the organization, so if I could use my classwork as an opportunity to do a project I don't have time for, it would serve duel purposes. I didn't think that my professor would go for it, but I decided to ask anyway.

As I'd expected, she said no, but her reasoning was that she thought it would give me an advantage over the other students.

What?

This is an online class and we don't see each others papers. We aren't graded on a curve. My work has absolutely nothing to do with the other students.

So after a few days of being annoyed and struggling to decide which organization I would study, I decided to email her back and plead my case. I sent a very well thought out, polite email, arguing that as a struggling organization, all of the information I needed for the paper wasn't readily available, so it would still be a lot of research and work (and not just the easy way out) and that because it is something my organization needs, this would be not only be me learning the concepts and information, but also doing hands-on work that can actually be used.

Her response was, "I would prefer that you do not use your organization for your final paper. I do feel it gives you an advantage over the other students. However, I will make an exception if you are willing to forfeit five points. Let me know what you decide."

Perhaps this email came when I was more exhausted than I realized, but her answer annoyed me so much I wanted to scream!

As an undergrad, everything I learned was theory and concept- I couldn't apply it to "real life" because learning was my whole life. I would have written the paper on anything she wanted. I would have jumped through the hoops so I could get a good grade. But this class has been a different experience because I am able to directly apply each new lesson to my present day work. So it just makes so much sense to me that this assignment not only be for learning, but also for practical use. I like learning for the sake of learning, but in this case, it seems like a waste of time when I could be learning and DOING something useful at the same time.

But fine, she was willing to let me do it, minus 5 points. I gritted my teeth in annoyance and wrote a slightly more snappy response than I ordinarily would-

I wasn't aware I was in competition with the other students. I have learned a great deal from the other students in discussion, and I hope they have benefited from my contributions as well. However, I am in this class to learn for my own sake, regardless of the other students.

I will take the 5 point deduction because regardless of my grade at the end, I think I will learn more in the long run. I'm not in this class to compete or to try to have the best grade- I am in this class to gain knowledge in order to best run my organization.

Thank you for the exception.

I've been ideal student my entire life because I have always done exactly what I was told. I never had trouble with authority or rules. I was successful because I gave my teachers exactly what they asked for without question. I started my career in the same way, but as my leadership skills have developed and as I have become confident as an adult, I have become peers with so many of the authorities I spent my life answering to.

So education is different this time around.

When I was 18-22, I would have thought the professor knew everything and couldn't be wrong and if she wanted an assignment a certain way, I would trust there was a reason for it.

Now?

This woman is a few years older than me. Like me, she's had a career in nonprofit organizations. She has more work experience than I do and certainly more knowledge in the nonprofit sector overall. But the grammar on her syllabus sucks, which yes, I notice and judge. Our titles of "professor" and "student" separate us, but I not enough to turn me back into an obedient 18 year old.

Advocate

My dad is on oxygen for the next few months until his lungs completely recover. When he left the hospital, three different types of equipment were delivered to my house- a concentrator, which is like an oxygen tank but it runs on electricity. It has 50 feet of hose so he can walk around the house without having to carry anything with him. He also has oxygen tanks and a little cart so he can leave the house and still have oxygen with him. The tanks last about 4 continuous hours, so we have several of them. We also have a back-up tank, which is the same as the portable, but lasts 24 hours (in case the power goes out and he can't use the concentrator).

When we moved to camp, I couldn't fit the back-up tank in my car (we had a lot of other stuff), nor could I lift it myself, but the medical supply company had already said they could pick up and deliver any of the equipment.

Thursday we were supposed to get the new back-up tank, more portable tanks and also some pads for the tube because his ears have been really sore where it rests. I was in the city for a meeting, and when I returned later, my dad told me that the delivery guy didn't have the back-up tank or ear pads, but he'd offered to bring them when he returned to the area in 4 weeks.

My dad told him that was fine, but he should probably expect an angry call later.

4 weeks?! Um, no. Completely unacceptable. Cue angry phone call.

My mom always warns me to be polite. I think it is because when I tell her stories, I usually include the phrases, "stupid idiots" and "they've gotta be f&@%ing kidding me?!" a lot. But I'm always polite.

"The driver told me he forgot the ear pads. I've already fed-exed them out to you" was the response as soon as I told the coordinator my name.

"And the back-up tank?" -me

"He forgot that too?" -coordinator

"Yes, he had three things and he forgot two of them. What can you do for me?" -me

"I can have him back to you on Monday?" (his tone was more of a question)

"Today would be better."

"How about tomorrow morning?"

I feel like I've been fighting every step of the way since this whole fiasco began. I'm not sure if this is how it goes when someone gets sick. Everyone told me I needed to be an advocate for my dad and that I've been doing a good job. I don't think I've been unreasonable with my expectations and I don't regret any of the demands I've made thus far. I've been polite, patient and kind. But I have also been assertive, thorough and relentless.

I'd like to think my dad would have gotten the same level of care regardless if I was involved or not. But I'm actually not sure if that is the case.

I'm not sure what people do if they don't have someone there to advocate for them. Even if you are completely competent and assertive normally, when you are sick, you truly can't advocate for yourself. It's a little bit scary to think about actually.

Recovering at Camp

One week ago (on Thursday), my dad got out of the hospital. On Friday, we drove back to camp. Originally, we all thought he would stay at my house for a few days or even a few weeks. I wasn't sure how many follow up appointments he would have, and we didn't want to rush off to the woods if he still might need to go to a doctor.

But his follow up appointment isn't for two weeks and there was no reason to stay at my house. In the 24 hours he was there, he was already starting to go crazy. No matter how comfortable I tried to make the spare room or the rest of my house- he wanted to be at home. His home. In his bed. With his stuff. His surroundings. When you don't feel well, you want to be in the place you feel most comfortable, so being at my house wasn't going to work.

Also, we are in a unique situation- I can work from anywhere, so I didn't have to take time off from work. I also just happen to live at my dad's house for 4 months a year, so moving with him wasn't difficult either. I was going to move to camp in the middle of May anyway- moving a month early wasn't a big adjustment. My brother and my aunts all live in the city, so moving 3 hours away up North meant that they wouldn't be much help, but ultimately, this is about what is best for my dad, not what is most convenient for all of us.

We've been here a week now and it's going well. My dogs are thrilled to be back at camp, living the dream life, relaxing outside and playing until they pass out. I don't have to drive to the office in the morning; I've pretty much worn sweatpants 24/7 and with little to entertain me, I've been incredibly productive with both camp and school work.

And my dad is improving- 3 weeks ago the doctors said he might die. So the fact that he is out of the hospital is a huge improvement. Recovery is going to be a long road- he needs help putting on his socks and he naps several times a day. We take two walks a day- just slightly farther than the mailbox and back, which still requires several breaks and he usually has to nap afterwards. He has to use oxygen 24/7, which he hates and he is on a strict low sodium diet, but he's improving every day. He gets frustrated sometimes, but this is just a small speed bump along the road of life. Maybe someday we will look back and laugh, or well, if not laugh, at least be able to say, "remember that short period of time when it was kinda rough- I'm glad that's over!" So we'll move forward, one day at a time, until this is behind us.

Hospital

After 15 days in the hospital, my dad is out. A broken rib led to a broken blood vessel, which led to a chest filled with blood, which led to a blood infection, which led to a helicopter ride, 4 days in the ICU and 15 days overall in the hospital.

I've been at the hospital every day. I don't think I've ever done anything for 15 days straight- even at camp there are weekends. It's been a blur of medical lingo, exhaustion, stress, unanswered questions and at the risk of making this about me, and not my dad (who was, ya know, in the hospital), I feel like I've been in a nonstop battle.

At first my dad was in too much pain and too drugged to comprehend anything. They told me to prepare myself that he might not walk out of the hospital. Helicopter and ICU aside, I didn't think we were talking about death serious. The doctors didn't have any answers, he was just a complete wreck. His lungs were filled with fluid. His liver couldn't keep up and was thus not functioning. His kidneys, blood pressure, pancreas- they were all messed up. He had a raging infection, somewhere in his body. I just kept thinking, "it was just a broken rib, that's not a big deal. This can't be right."

They tested everything every day and every day, I demanded to know what the results were, to see the scans, to speak with the doctors. I developed a reputation early on- polite but demanding. He wasn't coherent enough to answer questions or retain any information, and he deferred to me to speak and listen for him.

He moved out of the ICU, which they told me was a good thing, but I was still stuck on that whole, "possible death thing" so I wasn't celebrating. The first night on the regular floor went fine. But the next night I got a frantic call from my aunt, who told me he was talking gibberish (which he had been for a few days) and that he was very agitated. A few minutes later she called back to say he'd pulled everything out- chest tube and IVs. When I got to the hospital a few minutes later, my dad told me the nurse was hurting him and begged me not to leave his bedside. For 6 days he'd been telling me he was fine and to go home and not worry, so this was new.

I'd warned the nurses to watch him before I'd left earlier that day. He was confused and trying to take apart several pieces of medical equipment. I wouldn't say I yelled, but I certainly didn't hold back, and I was aware that there were several nurses watching me as I spoke with the head nurse. They moved him to a different room, with a different nurse and he calmed down. Early the next morning, I was back and ready to be there for the day. When he woke up, he didn't know where he was, was seeing things and I was afraid it was going to be a very bad day. But eventually the meds wore off and he calmed down and by the end of the day, he was okay again.

Day to day was a roller coaster- one day he would be feeling good, talking about projects at camp, telling me to go do something fun instead of hanging out at the hospital. The next day, he would be depressed, sure this was the end and he wasn't getting out of the hospital ever. I spent the days sitting by his bedside, refilling his water, telling him he would be fine, helping him change his gown or go to the bathroom, hunting down his nurse every few minutes to request another blanket, more pain medication, or any other random thing he wanted. I spoke with dozens of doctors, physical therapists, occupational therapists, the dietitian. I knew his stats better than any of them and peppered them with questions.

When he got strong enough to move around, I helped him stand up, go for walks, shower. Once he was feeling slightly better physically, the biggest challenge seemed to be emotional. With no real schedule, nothing to do and still feeling pretty awful, the days were difficult for him. I would arrive first thing in the morning and tell him our plan for the day. Brush teeth. Change gown. Walk down the hall. Nap. Eat. Breathing exercises. Nap. Snack. Walk. And so on and so on. Having a schedule seemed to help keep him upbeat.

When I was at the hospital, I was worried about my dogs or housework or feeling like I should be in the office or worried about school work. When I was in the office, I wanted to be in the hospital, afraid I was missing some new piece of information. For 15 days, I've wanted to crawl out of my skin- completely unable to feel comfortable anywhere. I felt like I was fighting the whole time- fighting for information, fighting to make sure he was getting what he needed, fighting to keep him optimistic. It's such a powerless feeling. Waiting for test results, waiting for medicines to kick in, waiting for progress, for answers, for normal to come back.

But now he's out and we're starting the rehabilitation process. The doctors say 2-3 months. He claims he's a fast healer and they don't know what they are talking about and he'll be fine in a few weeks. Arguing and knowing more than everyone is a clear sign to me that he's feeling stronger, so I'm happy to hear him rant. And hopefully he'll be good as new as quickly as he thinks...

Thug Life

The hospital my dad is at is a level 1 trauma center. The patients here are the worst of the worst. They don't just have an injury or illness, they are also addicted to drugs, have ongoing health problems and have had rough lives. According to the nurse who explained all of this to me, that's a good thing.

"You don't want your dad to be the sickest person the doctors have seen. Yes, his injury is serious, but it's pretty basic compared to some of the patients they see. These doctors are used to complicated, and so your dad is in good hands."

I hadn't thought of it that way and her logic was comforting. I'm not sure how accurate it was, but it was comforting. The hospital is in the middle of downtown and every time I walk inside, I have to pass by the creepy people standing outside (why so many people are standing outside a hospital, I have no idea).

Walking inside today, a thug-ish, potential gang member was hanging out and as I approached he said, "hey girl". Judging by the way he put his hands up and backed away, I'm guessing the look I gave him fully conveyed my feelings of rage and potential for violence. I've been at the hospital 6 days in a row, my dad is 45 pounds heavier than when he arrived (his abdomen and legs are filled with fluid because his liver isn't working) and I'm not sure how long it's going to take for him to get better. I'm scared, I'm tired, I'm stressed out and I am not happy about being at this hospital with all of the riff raff in the city.

I carry pepper spray on my key chain and I wouldn't hesitate to use it on my best day, so today is not the day to try me. Don't let the khaki pants and pink shirt fool you- I am the most threatening person out here.