Help for Healing

Bitter & Sweet, living daily with grief


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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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Medicare Mayhem

Dad fell last weekend and wound up with eight stitches on his head.

Then they figured out he had heart issues (which probably caused the fall) and he was transferred to another hospital and had a pacemaker put in. All of this was new to us so there was a huge learning curve. Plus of course it’s emotional to have a loved one with continued medical problems. Then you add the lovely medical system which is sorely lacking in common sense and it’s enough to drive even the sanest person crazy.

I keep a medical journal for my dad. I am going to share just one day’s entry with you so you can share in the madness. Of course I have changed the names to protect the guilty.

Wednesday:

Called Hospital G to ask them to give the surgeon’s assistant my phone number in case she saw Dad before I could get to the hospital.

Surgeon’s Assistant E called (Yay! She got my message!) and said that dad should be ready for discharge sometime today

Called Assisted Living (where Dad now lives) to let them know Dad would need his stitches out.  They said, “They don’t do that there.” I told them the doc at ER told me that assisted living usually handles that. They said they would have to get back to me. Also said they could help dad with getting dressed, etc. because his arm will be in a sling for six weeks but they would have to charge extra.

Called Assisted Living again to ask why scripts require a two week notice, also asked about the stitches; she said she would voice my concerns to the correct people and then have them get back to me.

Nurse S, hospital charge nurse from Hospital G called; said that dad had been evaluated by PT and was unable to walk properly, even with a walker; he would not be released and needs rehab; crap!  he will miss Thanksgiving 😦

Social Worker J from Hospital G called; told her I had heard the news; she said the problem is that medicare would not pay for rehab so it would be all private pay; I asked why and she said he needs to have been in a hospital for 3 overnights to qualify; I reminded her that had been transferred from Hospital M; she said the problem is that his status was “observation” which does not qualify; she was going to do some research and get back to me

Called Hospital M’s president as I had met him the day before; his assistant answered; I told her the situation and asked if they could change his status; she said their patient advocate was on vacation this week; I needed to call Patient Advocate L from Hospital Ge and she would communicate with the right person

Left message for Patient Advocate L and paged her; continued to do so every 30 minutes

Called the number I had for Medicare; 30 minute wait so I left a message

Patient Advocate L called back; said the criteria for hospital status is very strict so it can’t just be changed; if they do, we could end up having to pay for the hospital stay too; said she was going to pull in Head of Discharge Planning M to get a team together to try and find a solution

Social security called back; I had the wrong number for Medicare; called Medicare and they said that acute inpatient rehab (in a hospital) is covered by them and does not require a 3 day stay; sub acute skilled nursing facility rehab is not covered without a 3 day hospital stay; I asked if there was an appeal process and she said no

Talked with Nurse S about this information; she said Dad would not have the stamina for hospital rehab; it is at least 3 hours of intense therapy daily

President’s Assistant at Hospital M called back with another name because I had left a message for her saying Patient Advocate L hadn’t called back; I told her I didn’t need it and a team was working for us

Talked again with Nurse S; she said that if I took Dad home with me, he would need to be watched 24/7; she could set up services at home if his primary doctor (who is at Assisted Living) would write the orders

Assisted Living Head Administrator S called back to address my concerns; she said that express scripts requires time to deliver and that’s why it needs 2 weeks; I explained that wasn’t what I was talking about; I was referring to Assisted Living Doc J ordering scripts from them on the day I ask for them; it wasn’t happening; she said Dad would probably require assistance with dressing, shaving, etc. because of the sling for 6 weeks and I asked her for a ball park rate of how much that would cost; also, explained that we needed orders for rehab if he came to my house; said she would have to call back

Nurse S said the team made Dad’s status in patient as of today; if he stays until Saturday, medicare would pay for rehab

During all this time, dad was extremely out of it; I found it he had taken a narcotic for the pain (which explains it; he reacts very strongly sometimes); he was sitting in a chair, bent over sleeping; at one point he woke up and asked about the macular degeneration grid he uses for his eyes; I asked Nurse S about it and she wasn’t familiar with it; I suggested she google it; she did and printed him up a grid.  Then it occurred to me that if he took the meds before the PT evaluation, that could have effected his walking; I talked to the staff but they insisted that he was alert and that had nothing to do with it; I disagreed, but there was nothing I could do about it so I dropped it (Common sense tells me that if the meds had him drooling on himself for five hours, it probably effected his balance while walking, but I got the ‘ol “WE know cardiology patients” stuff… Well, I know my Dad!!)

Social Worker J called back;  I had asked her to look into Dad’s secondary insurance; she did and they will not pay for rehab either; rehab is $490 a day and requires a 7 day advance payment before start; I told her that the team had changed Dad’s status; she said no one kept her in the loop and that is not an option and we might also end up paying for the hospital stay; she said she would discuss things with Discharge Planner M and get back to me

Assisted Living called back with the administrator and social worker on the line; they said they felt that the best option for dad was to be released to them and Doc J would write an order for rehab there; I (or family) would have to come at least twice a day to assist dad with dressing, undressing or else we would have to pay; 2 showers a week is $150/mo; the rest would be $300/mo, ballparking about $450 extra a month; I said I would have to discuss this with the team and get back to them

Surgeon S’s office called to set up a 2 week follow up appointment

Talked to Social Worker J; said she is out of the loop now; Nurse S is the one who will follow up

Nurse S said that Surgeon S’s assistant noted that dad’s blood pressure dropped; this is a legitimate qualification for status as an inpatient stay; he will be moved to another part of the hospital in the general population vs. the cardiology unit; if he stays until Saturday, he will be eligible for rehab being paid for (Now how is that for common sense? Now we are hoping dad DOESN’T get well so he has to stay in the hospital long enough so that insurance will pay for the services he needs!)

In between all of this, is the rest of my life.  Call from a school social worker to discuss a client I have.

Call from my client; I forgot her appointment; started crying because I really, really needed the money this time; she was great about it, but I felt awful

Sent 33 texts to try and get rid of my sabres tickets for last night because Frankie was already going with a friend; too exhausted to go but seats were $150… ended up going so they wouldn’t be wasted…

All said and done, I sat Thanksgiving morning and counted all the phone calls I had the day before, just for giggles. Wanna guess? 59!!!

No wonder I’m nutso…lol

But here is something nice. When I finally left the hospital last night, I was crying on the phone out of exhaustion and frustration, talking to my sister. The parking dude told me I didn’t have to pay the 7 bucks that I usually have to pay for parking. I told him thank you and I planned to cry every night so he would let me off the hook. He smiled at me.

 


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Common Sense… A Lost Art?

I really don’t want my signature blog to be about complaints. And yet the things that motivate me to write lately, seem to be about things that irritate me. Do you have any stories you want to add? Here are some of mine from the last 24 hours.

Last night I went to my favorite karaoke place. I don’t get to go much anymore but I used to be a weekly regular. I was saying to someone that I wasn’t too thrilled with the bartender. The last time I was in the there he was friendly and fun. Yesterday he acted like he didn’t even know who I was. Just gave me a bad feeling. But the kicker was the end of the night. Bottom line, my bill was a whole $7.50. I gave him $22 and asked him if he could bring me a ten back. Now, that is about a 70% tip. 70%!! He came back with a five and five dollar bills. Waiters do that all the time. We know why they do it- they are expecting a tip and want you to have change to do it. I don’t really have a problem with that. I actually almost count on it sometimes.

But after I already gave him a 70% tip? I was incredulous. I thought maybe he misunderstood or didn’t know what the bill was. I asked him if he got the tip I already gave him and he just said yes and stared at me. I couldn’t believe it. I was disgusted. He gave me crappy service to begin with, I over-tipped him anyway in light of the Christmas spirit, and then he had the balls to imply he wanted more. I cussed all the way home.

Today started out great as well. I’ve already mentioned I’m burning the candle at both ends so I don’t appreciate a bunch of nonsense added to an already daunting list. Frankie’s bus came over 30 minutes late this morning. The roads were pretty bad. I got a call from the school later that said Frankie was absent from school. If you are a parent, you know what that does to your heart. I called administration and politely but firmly asked them if they thought their policy made sense to take attendance before their buses even arrived. She thought that was probably a bad idea and patched me through to the proper school office.

The next woman I talked to was brilliant. I asked her the same question and I was told they extended homeroom but took attendance anyway. Frankie’s teacher called the office later and said he was at school so he had already been marked “present” (like that was the important part). I still suggested that perhaps they should indefinitely postpone attendance- or at the very least- postpone calling parents and alarming them until after all the buses had arrived. It was great that they changed their sheet of paper, but did it not occur to them to call back the parents they had called prematurely and apologize for their mistake? Her response was to ignore me so I hung up on her.

Really. How about some common sense?

Reminds me of a few of the chapters in my second book when I talk about some of the craziness I had to deal with, with different agencies after Tim died. By the way, it got released this week!! Check it out when you get a chance. It’s called “Life After Death, On This Side of Heaven.”

Anyhow, I never used to get mad about stuff. Or if I did, I just made the best of it. Now I verbalize my responses. Some would say, “Good for you.” If you are that special guy in my life, you would even say, “You’re welcome” because he has taught me the benefits of anger and sticking up for myself… lol. But I’m sure lots of people would tell me to chill out (no pun intended). Feel free to comment, but beware. If you fall in the latter category, you might just get a call from me :). Just kidding… (sorta).