Stories from the Chronic Life

My Dad had another COPD breathing episode brought on my a reaction to the drug Fosamax.  He ended up in emergency and spent five days in the hospital.

I was fortunate in that I had the folder from his stay in January sitting on the spare room bed.  We grabbed the folder and everything my brother needed to relay to the doctors was right there.

My Dad will probably have more of these little adventures as he ages.  It’s got me to thinking that we should be better prepared.  I am going to set up a little overnight bag with a few essentials he’ll need for his hospital stays.  I’ll keep an updated list of his medication and doctor list in the bag too.

You hate to even think of someone having to go to the hospital.  But, after two visits in three months, it’s a reality.  Better to be prepared than to constantly be taken by surprise.

My Dad and I live together.  After his recent hospital stay, his doctor sent him home with oxygen therapy.   I’m not sure for how long.

We’ve got a concentrator, compressor, two small tanks, and a humongous emergency tank in case the power goes out.  My Dad is hooked up to the concentrator when he is in the house, then uses the smaller tanks for outside.

It’s my job to fill the tanks using the compressor, set the tanks up on his cart, and make sure he’s using everything correctly.  It’s not a job I relish.  The oxygen scares me silly.

Even though I’ve been through the demonstration and I’ve read the manual, I’m still leery.  But, this is what life is going to be like, maybe for the rest of my Dad’s life, so I have to adapt.  I must get used to it.

Yesterday, I set up my first tank.  You know what?  It wasn’t nearly as bad as I thought.  In fact, it’s easy to do.  I put on the regulator and attached the tubing.  I tested the valve to make sure oxygen was coming out.

It isn’t complicated.  My biggest problem was the arthritis in my hands.  I could put on the regulator with ease, but I had a heck of a time pressing the tubing over the little spout.

So, I’ve conquered one challenge.  Next I’ll fill tanks. And, then the next challenge will be setting up my Dad for driving with oxygen.

One step at a time…that’s what I keep telling myself.

About 5 days before my birthday, I received a letter from my health insurance company.  They raised my rates because, gosh, they really need to maintain my level of good quality coverage.  No matter that I have not used my health insurance in several years because I can’t afford to use  it.

My premiums went from $398 to $468 every two months.  Two weeks ago, I got another letter from my insurance company.  Evidentally, they figured out that I have aged since my last rate increase (right before my birthday).  Guess what?  I’m in another age bracket and my rates were increased again.  That’s twice in less than 6 weeks.  Now my rates are $568 every two months.

I began searching for a plan I might be able to afford.  My problem is probably the same as so many others.  I could switch companies and plans had I not had the audacity to be sick in the past.  Chronic illness made me uninsurable.

Since I can’t find health insurance outside of my current insurer because I’m considered uninsurable, I have to switch to plan with an even higher deductible and less converage.

What is wrong with this picture?  Isn’t the idea of insurance to pay into it so that when you need it you can use it?  Instead we have a system where you pay for insurance.  Then if you use it, you suddenly find yourself with skyrocketing premiums and unable to pay for the appointments and tests that your insurance won’t cover.  You can’t afford to live without insurance and you can’t afford to use it if you’ve got it.

I hope that this changes sometime in the near future.  The health insurance system in America is broken.  It needs a complete overhaul.  It should benefit those who pay for coverage, not spend it’s time preventing people from benefitting.

We all know disabled people.  Some of us are disabled ourselves.  However, folks still hold many steretypes about the disabled.  Weid, different, stupid, unworthy…those are just a few words that come to mind.

For the most part disabled people are invisible on TV.  Oh, you might catch someone in a wheel chair every now and then or a blind performer might appear on a show.  But, for the most part, they are in the background, kept where they won’t offend.

The BBC is trying to change that.  They’ve added a disabled woman named Cerrie Burnell to their children’s show “Bedtime Hour”.  Burnell was born with only half a right arm.

While Burnell has brought on lots of praise, the show has earned some negative comments from parents.  Some parents fear that their children are too young to see a person who is disable–a person who doesn’t look like them.  They are afraid that their children will ask questions they can’t answer or that Burnell might scare them.

Others find Burnell a welcome addition to television programming.  They hope that by showing children a capable, likable disabled person on a children’s shows, they’ll grow up to accept disabled people.

My feeling is that the more children are exposed to disabled folks, the more they will find that they are just like everyone else. Of course, they will ask questions. But only through asking questions will they learn that it’s disabilities make people different physically, but they are people none the less.

MSNBC did a story on Burnell.  Watch the video and decide for yourself:

I found myself in a strange predicament when my Dad returned home.  I was happy to see that he felt good.  In fact, he was one happy customer.  You wouldn’t have even known he’d spent five days in the hospital.  He felt better than he had for two months.

I, on the hand, felt like someone had run me over with a steam roller.  I was tired, cranky, and unable to deal with life.  I kept it together, but I didn’t want to.

Since I live with my Dad, I had 24 hour duty.  He didn’t need alot of help, but I still had to deal with doctors, the medical supply company, making sure he took the right drugs and the right time, and so forth.

Not only was I exhausted but my Dad was on Prednisone.  It was making him talking incessantly.  I’m not even sure he breathed for the first three days because he didn’t stop chatting.  He was like a kid.  He’d start in five minutes after I sat down to eat my breakfast and didn’t stop until I went to the bathroom

I was incredibly relieved over the next three days when family members came to check up on him.  I was able to play with my nieces, while my brother and sister in law heard the hospital stories twice.  I was able to phase out when my sister and brother in law came by.  I was able to leave the room when our neighbor showed up.

It really helped me get through the rough part.  That first week was really trying.  We had a new routine to go through and new worries.  I’m not ashamed to say that having people come over to sit with my Dad so I could shut my brain off was just what I needed!

The Monday after my Dad came home, I hadn’t heard back from the hospital doctor.  I took matters into my own hands.  Since we had no clue what was going on with my Dad’s treatment, I called his GP.  It didn’t help to find out he wasn’t not informed about my Dad’s hospital stay and had no idea what was going on.

He wasn’t supposed to meet with his pulmonary specialist for two weeks, but I decided enough was enough.  I complained to the receptionist and got him an appointment the next day.  My Dad needed help getting around so my brother took him.

Before the appoint, I made a sheet for my brother to take.  I wrote down all we knew about my Dad’s treatment, his medications, and all our questions.

It turns out that because of lack of communication, much of our anxiety was for nothing.  The pulmonary specialist only meant for my Dad to be on oxygen a week so as to get his oxygen level back to normal.  He claims he told this to my Dad in the hospital, but it’s obvious my Dad didn’t remember.  Why it wasn’t relayed in the release packet is beyond me!  Had it been noted, I would have approached things differently.  I probably would have kept half my sanity at least had I known that we only had to deal with the oxygen stuff for 7 days.

It was a relief to call the medical supply company and have everything carted off.  Still, the whole situation left me exhausted.  Information should have been relayed to the family.  Communication should have been easier between the family and the doctors.  We never should have had to wonder whether we were giving my Dad the right medications or not.

Next time, I won’t wait for call backs.  Depending on the situation, I will go straight to whichever of my Dad’s regular doctors are involved, and demand they explain everything.  I won’t allow them to relay things to my Dad.  They either tell a family member or write it down.

It’s all been a learning experience, I can tell you that much!  There are several things I’ll do differently when and if this happens again.  It’s sad that while you are at your most stressed out point that you have to be on everyone’s butt.  But, it’s the only way to ensure things are done correctly and there is no confusion.

The day after my Dad came home, I was utterly and completely exhausted.  I was emotionally drained from a week of worry and I had to deal with the ramifications of my Dad being on oxygen.

I can tell you that despite the representative telling us that the equipment was perfectly safe if used properly, he sure didn’t spend much time telling us what properly meant!  I went over my notes and the book, hoping to find comfort in repitition.  I only found that the more I read the more freaked out I became.

It didn’t help to realize that neither of us remember how to take the travel tank off the compressor when it was full.  I wrote notes but they weren’t complete.  My Dad was exhausted, not really thinking, and from the moment he took his glasses off to put on the nose piece, he didn’t see anything!

Then I had to worry about my Dad’s forgetfulness.  Twice I came into the kitchen to find a flame going on the stove without a pot.  I hate having to be watchful of everything.  Even I have my bad days.

Thank God for sane family members.  My brother came over the next day.  He had fresh brains and easily figured out how to remove the tank.  We went over everything together and I felt much better about the whole thing.

Sometimes you need someone to share the burden.  And, it doesn’t hurt to have a second set of brains around!

The day before my Dad’s release, I spent time washing clothes and blankets.  I got everything ready for him.  When he called to say he was coming home, I prepared a bag of clothes so he could get changed.  I couldn’t get a straight answer from the hospital staff on what would be expected with my Dad’s treatment when he got home.  You can imagine my surprise when at 5pm that evening, a medical supply company called to say they would be dropping off my Dad’s oxygen equipment!  I was told by the doctor that he wouldn’t need it!

When my Dad came home, my sister’s and I reviewed what she’d been told at the hospital and then the information he was sent home with.  It was definitely lacking!  While it told him how to take the two medications he was sent home with and for some reason gave a lengthy description of what to do if he fell, their were no instructions about the medications he was taking prior to being hospitalized.  In fact, the list that was sent home with him, was the list I had written!

I looked over the packet several times.  Not only did the doctor leave no directions about his medication, nowhere in the packet did it say anything about oxygen.

At 8pm a representative from the medical supply company dropped off the equipment.  We sat through the demonstration knowing we were both too darned tired to remember most of it.  After he left, I sat looking at all Concentrator, Compressor, Travel Tanks, and Emergency Tanks, and wondering how much our lives would change from this point on.  Plus the oxygen freaked me out to no end.  Not only did I worry about something catching on fire, but I had to worry about my three legged dog tripping over the hose as my Dad dragged it around the house.

It took us almost a week to get everything straightened out.  I’m glad my Dad did well during that time.  I had to wait three days just for a phone call from the hospital doctor.  Since I wasn’t getting what I wanted from the hospital, I put in calls to all my Dad’s doctors.  It didn’t make me feel very good to find out that none of them

I was really disappointed that there were not more explicit.  It didn’t really give me a good feeling that all the issues concerning my Dad’s care were taken care of.  I was tired, angry, anxious, and annoyed.  I really did not feel like we were prepared by anyone to handle the next stage of his treatment.  It lead us to a few anxiety producing days that we later learned could have been avoided.

Although they had a meeting with someone from the hospital, it was really unclear what my Dad was supposed to do about his care when he got home.

My Dad was sent home five days after he was admitted to the hospital.  What a confusing day that was!  The doctor had informed me that my Dad might be home that day if he did well on his hospital walk.  Boy, was I surprised when my Dad called at noon (he hates the phone) and told me he was coming home.

I phoned the hospital only to find out that the head nurse didn’t know anything about it.  According to her he could be released in 15 minutes or 5 hours.  Great!  He would need a ride and that meant someone had to be ready to pick him up.

I waited most of the afternoon, then finally got a phone call at 4pm.  He was ready to come home now.  Sheesh!  Nothing like a warning.  Luckily, a family member had just gotten off work and was able to get him.

It turned out that he had to wait for his official hospital walk.  It was surprising because that was the first time he had been out of bed in five days!

What a pain in the butt for the family!  They have to keep the whole day open because the hospital staff might do something now or wait all day.  You really have to have patience to get through this stuff.  Something I lack on a daily basis.

After my Dad had been in the hospital three days, we were all very irritated and tired.  Besides worrying about my Dad, no one in the family had been contacted as to my Dad’s condition and treatment.  The nurse are prohibited to give out information.  The doctors seem to slip in during the wee hours of the morning and then disappear.

I spent a whole day trying to figure out who was in charge of my Dad’s case.  When I couldn’t get through, I called his GP and his pulmonary specialist.  Then I had to leave a message to get a call back.  I talked the doctor and felt pretty good about the information I received.  But, then I found out the pulmonary specialist was telling my Dad different stuff.

It was really frustrating.  In the end I found out that the doctors weren’t communicating with each other, so the right hand didn’t know what the left hand was ordering.  Then instead of communicating with the family, they were meeting with my Dad who didn’t remember a darn thing about the doctors visiting him!

I’m not sure how this can be improved.  However, the next time a loved one is in the hospital, I am going to demand that they relay all instructions and information to a family member.  It was very clear that my Dad wasn’t with the program.  Half the time he didn’t remember the doctors even coming to his room.  I shouldn’t have had to make multiple phone calls to track down basic information about his care.  Next time it will be different.