Help for Healing

Bitter & Sweet, living daily with grief


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Minor Frustrations

Last weekend, Frankie took a hit in his last hockey game of the season. I watched his teammates huddle around him, probably so he wouldn’t go after the kid and get suspended or something. It wasn’t necessary because I think it will be a long time before he finds himself in that situation again.

A few minutes later, he skated off the ice. He never does that voluntarily so I knew something was up. His coach told me later that he took that hit to his head and was feeling dizzy, so he removed himself from the ice.

Of course, Frankie said it was no big deal and he didn’t need any followup. The problem is, I’ve been following Dr. Daniel Amen online (see my spect imaging blog) and know just enough to make me dangerous. Head injuries are nothing to mess around with. At the same time, I don’t want to over react either.

I sought out a professional opinion and received the name of a pediatric neurologist. After spending a few days playing phone tag, I spoke to a nurse who wouldn’t say one word to me other than he needs to be a patient before they will talk to me. I get in the age of law suits that docs have to protect themselves. And I get that it’s generally bad practice to say too much without seeing a patient. What I was looking for was general information and protocol. I expected something like, “Well, you know of course it is best to come and be seen personally by the doctor. We think that any time there is a hit to the head, no matter how big or small, it should be followed up with an x-ray.” Or “You know of course it is best to come and be seen personally by the doctor. Generally though, if there are no symptoms such as throwing up or blurry vision, there is no need for an x-ray.” Docs and nurses give that kind of advice all the time. Every time my dad is released from the hospital they say, “Call us if he spikes a fever or vomits.” Is that any different?

I emailed back the first physician and got back a curt reply. I realize that I offended him which I certainly wasn’t trying to do. He said that a doc shouldn’t say anything without a personal evaluation (which I wasn’t asking for specifically, just for some direction about how to know what signs to look for if further followup is needed). He also said that is how law suits happen (which I know would be awful, but then it supports by original complaint, it comes down to money now most of the time).

He also said that I could find generic information online. I thought docs usually hate when patients do that. I wasn’t trying to be lazy. I actually asked the nurse if she could tell me any sources of information that are credible and reliable. She wouldn’t answer that either. His last comment was that this doctor was ethical. I wouldn’t know. I couldn’t talk to him, only his nursing staff.

I don’t want to be a cynic. I don’t want to be part of the problem. But how do you not end up feeling like in the end, it feels more like it’s about getting to bill us for a patient appointment?  And for a specialist like that, I’m sure it would require a referral and more extra steps. I just want to be a good mom. Not over reacting, not under reacting.

I will do my own research, but I stand by my reaction. I’m very disappointed in the response I got. There are ways to give out good information and still cover your ass, but I guess you would have to want to.


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When Sense Goes to Cents

This has got to be one of my most clever titles ever. It references what I consider to be one of the biggest problems our medical system has, the change from service to business. The almighty buck is the bottom line. Thus, common “sense” in practice has gone to worrying about “cents” instead.

If you follow Grey’s Anatomy, last week’s episode got me in a snit. It centered around a surgeon who knew she was having a heart attack but couldn’t get the doctors to listen to her because they were following their “protocol” and discounting the actual patient. Of course she ended up having the heart attack and almost dying because of it and I just sit there with my whole body tensed up knowing this isn’t just drama, it’s what really happens.

Last week I took Dad to his appointment with the cardiologist. The nurse had to check his pacemaker. She and I started chatting. Poor Dad. He must think to himself, “Oh God, here we go again.” I explained to her that Dad had switched to palliative care and that I found myself having to explain what to means to medical professionals, even those that work primarily with the elderly. Palliative does not necessarily mean a person is in the active stages of dying.

She told me that she was having the opposite problem in her family. I asked her to explain what she meant. She said while I was trying to get unnecessary services for Dad decreased, she finds herself fighting for services for her sister. Her story was appalling. I was so grateful she shared it with me because it gave me an entirely different perspective. It’s the same problem of having to fight a giant, broken system, but she was coming from the other side of the fence. It stretched my mind and further ignited my passion to try to change the ridiculous way things are run these days.

Her sister is relatively young, in her fifties. She has a degenerative, incurable disease and is now in as assisted living place where she gets medical care 24/7. At this point, her symptoms are similar to that of a quadriplegic as she has no use of any of her limbs. Like Dad, she has a swallowing issue. She was evaluated (like Dad has been a million times) and it was determined she requires thickened liquids. What often happens at this point, is that dehydration becomes an issue. It’s hard to keep drinking when you are on thickened liquids. Dad made me taste his thickened water at his last rehab stay. It was gross. Dad has decided he’d rather take the risk of choking than live the rest of his life drinking that stuff. I don’t blame him.

This woman is in a different place though. She is much younger than Dad and her brain is sharp. Her body just isn’t cooperating. Her sister noticed on one of her many visits that a little bit of regular water was helping immensely. She could communicate with others and would feel much better for a brief time. Dad’s nurse said that she even showed the medical team what a difference the water made and they agreed it made quite an impact.

Now is when the madness starts. Because she has been medically tagged “thickened liquids,” the staff is unable to give her even a sip of water. They can’t stop a family member from giving her some, but they can’t officially do so. Once she is labeled, there is no room for any exception, even when it is clearly medically indicated.

Upon inquiring further into this insanity, she was told they could indeed give her water if her status was changed to “comfort” care – i.e. palliative care. However, if they did that, she would no longer receive physical therapy or any other services she was currently given. Is it just me or is that ridiculous? It seems particularly cruel to do to a woman who can’t move her own arms to get herself a damn sip of water.

It’s about billing and regulations. I certainly understand the need for regulations, but why should you have to stop using common sense? Is there absolutely no room for even the tiniest piece of individual need? Not if you want insurance to pay for it.

My blood boils when I hear this stuff.  To Dad’s nurse- I don’t know if you are reading this, but if you are, thank you for sharing your story. I have no idea how it will take shape, but I am working to try to effect change for people like you and your sister. It’s an uphill battle with little success, but I’m not going to stop trying. Let’s try and bring compassion back to patient care.

Isn’t that just common sense?


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Exceptional

I’ve noticed that people fit into categories. Take waiters, for instance.

There are those who don’t do their job. They goof up your order. Your food is cold. Maybe they charge you the wrong amount.

There are those who just do their job, the minimum amount. When I go to Denny’s and ask for a cappuccino, they say, “We only have iced, no hot.” Fair enough. Hot is not on their menu.

Then there is Sharon. She is Summer’s and my favorite waitress at Denny’s. We ask to be in her section. When I ask Sharon for a cappuccino, she says,”We only have iced, but why don’t I put a cup in the microwave for you?” Now that is exceptional service. She isn’t required to go the extra mile, but she suggests it and then she does it. Summer and I always make sure we tell her how much we appreciate her. We both have lives that involve taking care of others. We love going to Denny’s for an hour and having Sharon take care of us. It means the world to us.

People are like that in general. There are those who just aren’t around when you need them. You don’t even ask because you know they aren’t going to say yes. Maybe it isn’t their “job” or maybe it is, but it doesn’t matter. They aren’t going to.

There are those who help, but only if it is convenient for them. “Sure, I can do that because I don’t have anything else going on.” Sometimes this is the hardest group of people to deal with. It’s not like they never do anything, so they can easily defend themselves. Often times, these are the people who say, “All you have to do is ask. Any time, day or night. I’m here for you.” And they believe that it’s true. Often, there is little insight into their own behavior. Self-awareness is not one of their fortes. You are grateful for what they offer, but you know there are great limitations to what they will do.

Then there are those exceptional Sharons in the world. They are the ones that actually sacrifice. Sacrifice. Give something up for someone else. I’ve come across a few exceptionals lately.

One is Dad’s urologist. I asked her for her phone number so I could reach her any time of day or night. She gave it to me immediately. I’ve had to text her a number of times with all of his emergencies. She responds every time.

Monday was Labor Day. Dad was out of a medical supply that I frantically tried over two and a half hoursto find. It was beyond ridiculous. His doc and I texted several times. I traced lead after lead after lead just hitting brick walls thanks to medical bureaucracy, which generally has no common sense whatsoever. Eventually, I came across Eric’s name, the district manager. He said he lived in Syracuse and wondered if I could meet him half way. Syracuse is over two hours away. I could do it because I was desperate. But then Dad’s is another 45 minutes away.

Eric called back and said that no way was he asking me to drive on a holiday. He drove over two hours to arrive directly at Dad’s apartment with plenty of medical supplies. Then he apologized to me for having to call several times to find the right place. Are you kidding me? I couldn’t believe he did that for us. I don’t care if it was his company’s fault that Dad had run out. That man didn’t have to do that. It was a holiday for him too. I couldn’t even explain to him that I could care less that it was a holiday. But I was truthfully overwhelmed with the last five days with Dad’s enormous medical responsibilities. I had spent hours and hours every single day to care for him, canceling work, etc.. I could have cried for joy when he said he would take care of it. Total stranger. Eric, you rock!

The next day, the nurse from the doc’s office called. I had put a call in earlier because Dad was also out of his medication samples and needed a script. She called me back to inform me that he needed authorization from insurance and it would take several days. She said she would bring me samples. Where could I meet her? She chose a diner between our houses and I met her there. I asked if I could buy her breakfast. She said she would eat with me but that I wasn’t going to buy. She handed me 12 bottles of samples. I absolutely insisted I buy breakfast. Almost total stranger. Amy, you rock.

We all have legitimate bitches and complaints about the world we live in, and the people who occupy that world with us. But I don’t ever want to lose sight of those who are exceptional. They are truly out there. I try to sacrifice for others, but I fail at times. Thanks to those of you who remind us what it means to care sacrificially about others.