48 Hours. It’s A Running Theme.

48hours

One thing I have noticed during this experience is that facilities (whether they be a hospital or a rehab center) seem to think that 48 hours is enough to make a major decision.  That is the amount of time they are required to give you to determine where you’d like your loved one to be transferred to next, once they are ready for discharge.

TRUST ME.  IT’S NOT ENOUGH TIME. Be proactive. Start your research the minute your parent goes into the hospital or into rehab, NOT when they are about to be discharged.

Here is a list of things to keep in mind when looking for a rehab facility.  Wish I’d had this list.

Questions you should be asking of the facility:

  1. What is the number of aides to patient ratio?  Look for a 6:1 ratio or better.  Anything fewer, your mom or dad will be waiting a long time to be helped to the bathroom. Remember, it’s not the number of nurses, or med tech’s you are looking at…it’s the number of direct service aides.  These are the people who are on the front line for taking care of your mom or dad.
  2. This may be a silly question to have to ask of a nursing home, but trust me ASK IT. You’ll want to confirm that all the bathrooms in the rooms are handicapped accessible. I found out the hard way.  The nursing home where my dad is does not have wall mounted handrails.  They only have “handlebars” attached to the toilet.  That is not sufficient for my dad’s needs.  I never in a million years thought I’d find a nursing home without handicapped-accessible wall-mounted rails.  I did. Lucky me.
  3. Will my parent have to share a room?  Again, don’t assume he/she will have a private room.  I did and found out that not all nursing homes have private rooms.  If they have shared rooms available, that is what Medicare will cover.  In our case, we have to pay $40 to upgrade to a private room.  In the last two places he received skilled rehab, he had a private room, for which Medicare paid.  I assumed (wrongly) that this place would be the same.  The way it works is that if the facility ONLY offers private rooms, then Medicare will pay for the room.  If the facility offers an option of a shared room, then they will only pay for a shared room. If it is important to you for your parent to have the privacy of a private room (it was for me), know that you may be charged a fee.
  4. Ask if there is a walking path or sidewalk outside the facility that is wheelchair friendly (if your parent is chair-bound) so you can get your mom or dad outside for fresh air.  Again, I assumed there would be because the last place my dad was had many different outside areas I could walk him to  get some Vitamin D and fresh air. This cannot be underestimated.  When a person is confined to a nursing home, it can be a very dreary existence.  Having the opportunity to get outside is liberating for both your parent and for you.
  5. If, your parent has had more than one hospitalization in recent months, make sure to get the hospital discharge papers from each facility and hand deliver them to the nursing home.  It is the protocol for the referring hospital (meaning only the last one your parent was admitted to) to send over discharge papers.  In the case of my dad, I found out THREE days into his stay at the rehab facility that they had NO IDEA that he had had hip replacement surgery 2 weeks prior.  They thought the patient they were receiving was there after hospitalization for GI ulcer (the side effect to the blood thinners he was put on after his hip surgery).  You can imagine the type of treatment he was receiving at the rehab center.  They were asking him to do things that he physically could not do;  they were roughly handling transfers from the chair to the bed, etc. It was only when I started complaining about the treatment, that it surfaced that they had a major whole in the information they were operating on.
  6. Don’t rely solely on the Medicare.gov site and their nursing home compare tool.  And don’t rely on US News and World Report’s Best Nursing Homes issue. Look at those resources but also talk with local doctors who have patients in rehab facilities.  The most important thing you want to ascertain is how good is the therapy your parent will receive.  That single thing represents the direct correlation to shortened stays in skilled nursing. Remember, the hospital social worker is not allowed by law to endorse a particular facility, so although they will help you find out if there is a bed available and to get all the paperwork transferred, they are not a good source for where to send your parent.

And finally, visit your mom or dad often.  It is a proven fact that residents whose family visit often get better treatment in these types of facilities.  Visit at different times in the day.  Speak up if you see your parent (or even another resident) not being attended to.  At the end of the day, this is a very tough job these people do day after day.  They want to do what is right but sometimes they are overwhelmed by the needs of the residents.

Thank them often.  

And then thank them again.

It will make a difference in their lives and in your mom or dad’s life.

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Become the multiplier. Share this knowledge.

knowledge

Three days into the new skilled nursing facility and I have already:

  1. Called the prior place my dad was receiving rehab before his recent trip to the hospital and pleaded for them to take him back, and
  2. Put the pieces of the puzzle together to figure out why my dad’s experience where he is currently placed was so much worse than where he had been.

FIRST LESSON TODAY:

Never, ever, ever, ever (have I said that enough times?) assume any prior knowledge by ANYONE. I had assumed that when my father was sent over to this new skilled nursing facility, that all his prior medical history came with him.  I had assumed that the facility knew that my dad had fractured his hip, that he had a recent hip replacement and that, as a reaction to the blood thinner the doc placed him on, he had an upper GI bleed. After all, both hospitals he had been at were a part of Mainline Health and shared computer systems.  They are a well-respected health care system of doctors and hospitals in the area where I reside.

What I observed during the first 3 days of his time at the new facility was seemingly no deference to the fact that he had had recent hip surgery.  He was being asked to physically do things that I knew he was incapable of doing (yet).  They were transferring him from chair to bed, from chair to commode as if his only problem had been an ulcer. In one case, during a transfer from the wheelchair to bed, I prevented my dad from hitting his head on the bed rail when an aid flung him onto the bed! When I witnessed this sort of stuff, it sent shivers up my spine as I wondered if this might be my fate some day. (Kids, I hope you are reading this blog and taking notes!)

What I learned this morning was horrifying to me.  I still am mystified as to how this can happen in the today’s world of electronic medical records.  Apparently, this is common.  So, folks, pay attention here.

LESSON #2

It is the protocol for a hospital to refer a patient to a skilled nursing facility with discharge papers from JUST THAT HOSPITAL.  In my father’s case, he had recently been at TWO hospitals:  one for his hip replacement and one for his GI ulcer.  Apparently, the first hospital doesn’t release any data to the skilled nursing facility because they didn’t make the referral.  SO….essentially, my father was sent over to rehab and the receiving party assumed he was there after an ulcer ONLY.  The only way to get the information about the first hospital is for the family to request it.  That would have been fine IF SOMEONE AT THE SKILLED NURSING FACILITY HAD TOLD THE FAMILY!!!!!!!

Once I realized there had been a very large gap in the information provided to the skilled nursing facility, I sat down with the Director of Nursing and worked out a plan.  We moved my father to a private room (which we have to pay the difference for privately –  this is the subject of my next blog post, coming soon!) and moved him to the dementia area, where the staff has training in how to interact with dementia patients. I am hoping it will be smooth sailing from here, but I have learned that during this phase of life, that’s a bit optimistic.  I’ll take even just a week or two off from the drama.

How the System Seems Stacked Against the Patient.

things

I wish I had a crystal ball.  If I had one, I would have known that dad would only be in the hospital for 4 days. When dad was rushed to the hospital on last Monday with internal bleeding, he had lost about 25% of his blood volume in one day.  When I arrived at the emergency room, he was almost completely unresponsive and pasty white.  All I was able to get out of him was a response to Dad, it’s Barbara.  I am here.  Can you hear me?  He responded “yes.”

I thought this was it.  The doctor said he was in a life-threatening state and that I should call family. Again, the questions were thrown at me.  “Do you want us to resuscitate him?  Put in a breathing tube?”  It all happened very fast and it was frightening.  I was doing this all alone.  The rest of my family is up in New England and my kids are both living out of the State.  It is during these times that the words “Stay Strong” have the clearest meaning.

Later that day, I got a phone call from the skilled nursing home dad had been at for 10 days receiving rehab.  He had made really good progress there and both my husband and I felt really comfortable with the care and attention he was getting.  The place was also very well maintained and on a stunning piece of land so there were peaceful places to take dad outside on a beautiful day.  The facility called me to tell me that because dad had been brought to the hospital, Medicare would stop paying for his bed at the skilled nursing facility within 24 hours.  If I wanted to, I could private pay for that bed to hold it.  The cost would be $325/day.

I thought about it for a millisecond and responded “no thank you.”  I didn’t know what was happening to my dad at that time, how long he’d be in the hospital AND he was already paying $4500/mo to “hold” his spot at the assisted living place he had been living before his hip surgery.  So I couldn’t see paying for THREE places at once – the hospital, the assisted living apartment AND the skilled nursing bed?  So I said, ” no thanks.”

What I should have done is slowed myself down.  The skilled nursing facility certainly wasn’t pressuring me to make a snap decision.  They said I could take a few hours to get back to them and think about it.  That’s what I should have done.  Buying a little bit of time would have given me more time to get a handle on exactly what was going on with my dad, what the hospital planned to do about it and would have given me a better gauge as to how long he might be there.

Fast forward to his discharge date and, of course, the place he had been receiving rehab no longer had a bed available and so my poor dad had to go to yet another rehab facility.  This one isn’t nearly as nice a place, although I think the rehab seems to be just as top notch. And at the end of the day, that is the most important thing he needed.

For most people, a different rehab facility isn’t a big deal.  For those dealing with dementia, as my dad is, it can be extremely stressful.  He now has to get used to all new surroundings (again), new people (again) and essentially restart his therapy from the beginning (again).  Not easy for any elderly person, but for those with dementia, it is very very difficult.  Again, the system seems stacked against the patient, rather than working for the patient.

I’ve told you about the 60-day rule. There is also a 30-day rule. Who knew?

30days

I tell you – I learn something every day on this job.  Today’s lesson is about Medicare’s 30-day rule. I tell you this so you don’t have to endure the additional stress I did when my father was rushed to the hospital from his skilled nursing facility when he started to bleed internally. I was not only worried about my father but also whether he had just screwed up the 100 days of skilled nursing eligibility with Medicare he had qualified for with this recent hip surgery.

The typical eligibility rules state that you must be “out of the system” (meaning healthy) for 60 consecutive days in order for an incident to re-set the clock making a patient eligible for another 100 days of skilled nursing care.  My father had been healthy for 61 days.

He was getting skilled care when he started bleeding internally and was rushed back to the hospital after only 10 days of skilled care.  Normally, in order to be Medicare eligible for skilled services, a patient has to be in the hospital for 3 days (admitted, not just under observation) before you are eligible for Medicare.  I was stressed because I didn’t know whether he would be there for 3 days and if he wasn’t, I was worried that he wouldn’t be eligible for skilled services after he was released because he went back into the hospital. And he certainly wasn’t walking yet.

HERE’S HOW IT WORKS

If your break in skilled care lasts more than 30 days, you need a new 3-day hospital stay to qualify for additional SNF care. The new hospital stay doesn’t need to be for the same condition that you were treated for during your previous stay. BUT….if you go back into the hospital within that 30 days period, the skilled care just continues on from where you left off – no need for a new hospital stay. Knowing that would have relieved that element of stress I was experiencing.

As it turned out, my dad was in the hospital for 3 nights, 2 of which were in the ICU.  He had lost 25% of his blood in one day from an ulcer in his small intestine that had been aggravated by the blood thinners which are routinely given after hip surgery (to prevent blood clots from forming).

Happy to say, he is out of the hospital and back into rehab.  My only disappointment was that I was not able to send him back to the same skilled nursing facility he had been at, which, in my opinion, was top notch.  In my next blog post, I will talk about what I wish I had done and could have done to avoid having to move him to yet another new environment….if I only had a crystal ball.

Please share this important information with your friends and family.  You never know when you will need it.  It is good info to file away in the back of your mind.  Because someday, we will all have the privilege of growing old.

The Medicare 60-day rule. Critical to know.

60days

As you know, if you’ve been reading my blog, I have been working on a Medicare appeal to fight what I considered to be an early discharge from Medicare in late July when my dad was in rehab for a pelvic fracture. I had appealed twice and had lost those appeals and was about to go before an Administrative Law Judge to hear my case on November 3rd, when I learned about the 60-day rule.

IT IS VERY IMPORTANT TO KNOW ABOUT THIS RULE.

When my dad fell again at the end of September and fractured his hip, which required hip replacement surgery and another round of rehab, I assumed that Medicare would consider this a separate incident.  With each incident, I thought, a person is covered 100% for 20 days and then from day 21 until day 100, a co-pay is charged.  If you have secondary insurance, that insurance pays the co-pay.

I assumed that since this was a different body part injured and that it was injured in a completely different time frame (and in his case, a different state), that the clock would re-set and he would have another 100 days to use for his hip replacement recovery. NOT TRUE.

MEDICARE RULES STATE THAT YOU HAVE TO BE OUT OF THE SYSTEM FOR 60 CONSECUTIVE DAYS FOR THAT CLOCK TO RESET. Otherwise, they just lump the second fall into the first and you are allowed to use whatever the balance of days you have left.  In my father’s case, it would have been less than 60 days.

As I was just about to ship off my documentation to the Administrative Law Judge, I learned of this rule. Amazingly, I learned of this rule because someone posted a story on Facebook about their own parent’s circumstance in response to reading my last blog  post.  This is exactly what I envisioned when I started this blog.

I CAN HELP YOU AND YOU CAN HELP ME. Please share this blog with your friends and family.  Information is power.

I will now withdraw my appeal to Medicare for the last incident.  Fighting for that extra week in July would mean that he would have been out of the system only 54 days. If I leave things alone, he’ll have been out of the system for 61 days, and therefore eligible for the full 100 days.

What to do if your parent gets prematurely discharged from rehab (and from Medicare).

medicare Image

When my dad went  into skilled nursing following his pelvic fracture in June, I blindly thought he’d be there until he was well enough and ambulatory enough to go back home.  WRONG.  Sometimes (in fact, it is feeling like more times than not) you are not in control.

Here’s my story.

When my dad fell and went into the hospital, he went into a state of delirium, which caused him to go four days straight without sleep.  This caused a type of psychosis, which necessitated giving him an atypical antipsychotic (or as I have come to believe, a nursing home’s favorite drug).  This drug worked to get him sleeping, but had the unfortunate side effect of making him almost narcoleptic throughout the day as well.  Can’t participate fully in PT or OT when you are constantly drowsy and falling asleep, now can you?  Let me answer that. NO, you cannot.

What happened next was that the nursing home/rehab facility and Medicare discharged my dad after only 35 days of therapy for “failure to make progress.” When Medicare discharges a patient, they no longer pay for rehab services (or the room and board or medications you have enjoyed while at the rehab facility).

I WAS OUTRAGED.  So I appealed the ruling.  I also signed a document requesting that the facility continue to provide services while my appeal was pending.  Within a couple of days, I got notice that my appeal was denied.  DENIED???  Again, OUTRAGE.  I appealed again.  This time I sent in a more detailed letter presenting my father’s side of the story, figuring there was not way they could deny it this time.  DENIED AGAIN!

My next step was to contact the Center for Medicare Advocacy, a fantastic organization that works nationally on behalf of seniors who are facing injustice by the Medicare system. They have tons of information on their web site about how to appeal and what steps to take.  TGFCMA (Thank God for the Center for Medicare Advocacy).  I sought advice from a very knowledgable attorney from this organization, who told me that most cases are denied at the first and second level appeals.  My opinion? This is a way for them to weed out most of the cases, because most people wouldn’t continue on with an appeal.

They don’t know me.  I am like a pit bull when I feel an injustice has been made.  And there is no clearer injustice than in my dad’s case. So I appealed again.  This time, I will have a Skype conference with an Administrative Law Judge, on November 3rd, who will hopefully read through all the documentation I will provide.  Surely, SHE will do the right thing.  I hope.  Stay tuned.

Sometimes it feels like you’ve been down this road before

My father fell in mid-June and fractured his pelvis.  On Sunday, he fell and broke his hip.  The good thing about this fall (is there a good thing?) is that I feel experienced.  I know can draw on the experience I had dealing with the first fall, to navigate through the system on this fall.  I say “system” because there is one.  And it’s a very clear process to everyone who works in the health care biz.  Unfortunately, those of us on the outside get blind sighted by it the first time we are confronted with it.

What happens is this:

1) you arrive at the hospital, assumably by ambulance.  You get your parent checked in; give the all the necessary insurance cards and the like.

FIRST TIME THROUGH: They ask you for living will, advance directives, DNR documents (stands for “do not resuscitate”),  You scramble to find them, and ultimately give the documents to the hospital on day 3.

SECOND TIME THROUGH:  On the way to the hospital, you swing by the house to pick up the file you already have put together with all this documentation, so you are ready.

Next, a social worker comes into the room (before your parent even goes into surgery) to ask you where you would like your parent discharged to…as in which skilled nursing facility for rehab.

FIRST TIME THROUGH:  You panic, as you have NO idea about skilled nursing, what it is, which one is good, what you want to be asking about a facility, NOTHING.

SECOND TIME THROUGH: You have already asked your sibling to go to www.medicare.gov and look at the nursing home compare tool to look at ratings for the nursing homes within a certain mile radius of where you live.  He emails that to you, and you have it before the social worker even makes first contact.  You are ready.

What you are never ready for is when the anesthesiologist asks you whether you want your father to be resuscitated should he go into cardiac arrest while on the operating table.  That is the conversation everyone dreads, but it is necessary to have that conversation and to be ready for it.  When it came, I was frozen.  I knew my dad was very clear in his advance directives that he didn’t want anything done to prolong his life if there was no way to recover.  Putting a breathing tube down his throat during surgery because he was fading, was, in fact life-prolonging, however I decided that in the controlled environment of the OR, if something unexpected happened, I did want them to do what they could to save him.

I also made it clear that OUTSIDE the controlled environment of the operating room, my dad’s advance directive was to be respected.  So if, after surgery, for some reason my father could not breathe on his own, they were to remove it.

IMG_6316 (1)SIGH. Welcome to the club no one asks to join.  If you are a member of this club, the more prepared you can become, the less stress you will have.