maze

The Maze of Medicare

Sometimes it amazes me (no pun intended) how I stumble on this information.  I shouldn’t have to stumble. This information should be readily available and it’s not. I hope that, through this blog, you will pause and ask questions when you encounter a situation so you can learn about your loved one’s Medicare benefits in a more expedient manner than I have.

My dad was on Medicare Part A last fall after he came back from rehab after his hip surgery. He was getting physical therapy and nursing services for wound care. When he went into the hospital this last time, I learned about a specialized Physical Therapy practice that had particular expertise in Parkinson’s so I made a note to myself that when he came home, I would sign him up for their services.  What I learned was that because they came into the facility, they fell under “Home Healthcare Services” according to Medicare, which falls under Part B.

You cannot access Part B services at the same time as Part A services.

So I had him discharged from Part A because I really wanted to try out Dynamic Home Therapy, the specialized therapy provider.  I was not disappointed.  They provided superb therapy, both physical and occupational therapy services and went even further to suggest that he look into a different wheelchair. I was exceedingly pleased I had made that decision. Once he was discharged from Dynamic Home Therapy, I figured I would eventually move him back onto Part A for skilled nursing services as he always seems to have a skin tear that requires nursing services.

Last week, I finally got the paperwork together and today, the nurse stopped by to tell me that she would be starting next week and would be providing him with wound care.

And this is the KEY THING SHE SAID: She casually mentioned that when she opens a new “incident report” it comes automatically with 20 sessions of Physical Therapy!

There is no dollar limit like there is with Part B but there is a 20 session limit PER INCIDENT. She can re-certify him every time there is a new incident and, in my dad’s case, simply having Parkinson’s would qualify him to stay on because there is no longer a need to show improvement. And, he pretty much always has some sort of skin tear so nursing would always be able to re-certify him for that. This means he will have ongoing physical therapy. There is an in-house therapy team right where he lives which is convenient. It’s not the specialized therapy that Dynamic Home Therapy provided me, but I look at it as a way for him to continue to get structured one-on-one exercise 3 times a week, compliments of Medicare Part A.

Your welcome for the information.

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5 Techniques for Caring for a Dementia Patient

memory-loss

I have been caring for my dad for about 4 years, 3 of which were remotely and the last one locally. Like everyone dealing with caring for a parent or other loved one, there is no advance cramming you can do to prepare for this job – you wake up one day and suddenly you need to be an expert in all things elder-care. It is the ONLY job that doesn’t come with a manual and there are few resources to help you other than learning on the job.

I thought it might be helpful to share some of the techniques I have developed and learned over this time period. These work with my dad, and I hope that they might be useful to you.  Unfortunately, there are over 70 different types of dementias so your loved one’s situation may be different from my fathers, but all dementias have many crossovers, so it’s worth trying some of these techniques.  You have nothing to lose.

  1. Pay attention. Be observant. To everything. I missed so many red flags when he was deteriorating.  I was so concerned with pushing him into assisted living that I stupidly was relying on him (someone who I now know had the early stages of dementia) to tell me when he was ready.  If you aren’t there, every day, then make sure a neighbor is watching out for signs.  Some of the early signs that I DID KNOW about didn’t register to me as signs.  Here they are:
    • Losing the ability to “work” the remote control on the TV; or conversely, saying that his/her TV is broken. Again.
    • Difficulty doing tasks that were, before, second nature.  In my case, my dad could send emails, was on facebook and was pretty “with it” for a guy in his mid-80s. The day I spent one full hour with him on the phone trying to instruct him how to open a browser window, should have been more than a red flag; it should have been a rocket blast. But it wasn’t.  Because I didn’t know anything about dementia.  I thought it was simply, short-term memory impairment.  It is so much more.
    • Impaired judgment.  One day, my dad decided to reheat a slice of leftover pizza. So he put the tin-foil-wrapped slice right on top of the burner and turned the burner on. Can you spell F-I-R-E? Again, didn’t register as a red flag.
    • Word finding difficulties.  This comes with aging for all of us.  It doesn’t necessarily mean dementia, but it is a possible pre-curser.  So if you see signs of this, be even MORE tuned in for other signs.
    • Forgetting doctor appointments or to take medicine. My dad even forgot that he brought his walker to lunch.  After lunch, he went crazy looking for it in his room because he had literally no recollection of it every leaving his apartment.
  2. When you enter the room where your loved one is sitting, make sure you are directly in front of them and have made eye contact.  First offer your hand (even if you plan to hug them next). By offering your hand, you give them time to process who you are. Processing slows down with Dementia.  Their vision narrows and eventually becomes binocular so don’t come at him from the side as you may startle them.  The instinct to shake hands will never leave them and by extending your hand to them, they will take yours instinctively.  Then tell them who you are, even if you think they should know you. And make sure to tell them your relationship.  “Hi Uncle Paul, it’s Bev, your niece.”
  3. Always tell them what you are about to do or where you are going (if you move them). Their world is very scary right now.  They want advance notice of any changes. The fewer changes you can make, the more comfortable they are.  If you never take them from the facility where they are living, they won’t care, as long as their routine isn’t disrupted.  For them, routine means safety.
  4. If you are a healthcare provider and want to take their blood pressure or re-bandage a wound, make sure to tell them what you are going to do and why and then, most importantly, ASK THEIR PERMISSION TO DO SO.  They have so little control left; they want to retain control over their body.
  5. Try to focus your activities on things they can still do.  Music is a wonderful activity as it is retained in a part of the brain that is unaffected by Dementia.  Dance together.  Do karaoke. Play name that tune. Play catch with a beach ball or a football, even from a seated position.  Hand eye coordination seems to stay in place and it can be fun!
I will continue with more techniques in future blog posts, so check back.  And if you haven’t subscribed, please sign up so you’ll get the next blog post delivered to your email. And finally, if you have any techniques that have worked for you, PLEASE SHARE THEM WITH ME!  I am always learning on this job.

 

Trying to Out Run the Inevitable

boulder

Lately, I have felt like I am trying to outrun a boulder rolling down the hill right towards me.  I am trying to outrun it, to keep just ahead of it, averting disaster.  This is the life of a caregiver, but it is particularly evident as time marches on.

In the past month, my father, who has a plethora of health issues, including Parkinsons, Dementia, Aphasia, cardiac problems, now has another couple more to add to his list: Bladder Cancer and another hip surgery because the last one didn’t heal properly. Yesterday I made the decision to go back in for corrective surgery to his hip in hopes that it alleviates the pain he has been in. Before I can take him into the hospital, though, I have to take him to the urologist so he can cauterize the tumor growing in his bladder.  We just found out that he had a tumor and since he isn’t a good candidate for surgery, we opted to cauterize it periodically to try to stay ahead of the cancer growth.  Once he goes in for his hip surgery and then on to rehab, Medicare’s rules don’t allow him to go outside for any doctor appointments, because once you leave skilled, they won’t let you back in without considering it a new episode (which would require another 3-night hospital stay). SO….to avoid that, we are going in to take care of the tumor and then HOPE that it won’t grow TOO FAST while he is receiving rehab because he won’t have another chance to see the urologist for 2 months.

We also have to get him in to see the Movement Disorder’s doc before he leaves for the hospital – he hasn’t been seen by him since last December.  Why? Because he unexpectedly fell and had to go in for hip surgery #1. Need to squeeze that in as well.

Hence the feeling of trying to out chase the boulder.

I am so angry about his hip.  Something to keep in mind if your loved one has to have hip surgery – particularly if they also have dementia.  Make sure you know ALL the details before you agree to anything.  I thought I had asked all the right questions.  When he fell last time, the doc said he would recommend the least invasive type of surgery, where they simply insert screws to help tighten up the fracture he had suffered (his was a non-displaced fracture).  I asked if the rehab would be easier because it was kind of laborious when he had his other hip done, although the outcome was excellent.  He said it usually was.

The VERY IMPORTANT PIECE OF INFORMATION HE DIDN’T SHARE WITH ME WAS that this type of surgery requires an individual to maintain a 50% weight bearing status for SIX WEEKS.  

Had he told me that, I would have told him that this won’t work with someone like my dad, who cannot remember anything.  As a result, the rehab was a disaster.  He was forced to be bedridden for 4 weeks (which is terrible for someone with Parkinsons, where exercise is truly an elixir) and then two weeks later, Medicare discharged him for failure to make progress. Nice, eh?  If the doc had shared that tiny piece of information, we wouldn’t be where we are today, going in for his THIRD hip replacement surgery.  No one should have to go through this, particularly an almost 90-year man. So the moral of this story is make sure you ask about the weight bearing restrictions, or for that matter, find out if there are any restrictions post surgery.  Then make the decision based on what you think your loved one can handle.

 

 

 

The Roller Coaster Ride of Emotions a Caregiver Feels

roller coaster

If you are a caregiver providing support and care for a parent or loved one, then this blog post will confirm what you are already feeling.  I want you to know that you are not alone. If you are a sibling or a relative who is across the country and only checking in from time to time on your parent or loved one, let me give you an inside look at differences in your experiences to those of the direct caregiver.

As you know, I am the primary caregiver for my dad, who has Parkinsons’ and Dementia. Every day that I visit him, and it is EVERY day, I am mourning him. From the time I moved him near me after he fell last summer and fractured his pelvis and, I believe, hit his head, he effectively passed away for me. The father whom I spend time with each day, is not the father  I knew. Although from time to time he pops back in to show himself, for the most part, we don’t have many meaningful exchanges.  His language is completely compromised and I spent most of my time being his advocate and making sure he is getting proper and appropriate care. And I make sure to show him daily that I love him and will protect him.

That said, I mourn for my dad every single day.  It is an ongoing, dragged out sense of loss.  Very different than one feels typically upon the passing of a loved one where the grief is overwhelming and complete.  For me, it is a daily experience.  When the time comes that he does pass away, for me, it will be a celebration.  It will be a sense of relief.  I know that no one, unless you have experienced what it is like to care for someone – on the front lines – you may not understand this.  But it is real.  Very real.

Dementia and the Art of Improv

Think_Fast_Improv_Skills_site

Improv?  Yes.  Now that I am extremely experienced in the world of Dementia, I have observed how important the skill of improv is to my interactions with my dad.  A bit of background first…my dad not only has Parkinson’s Dementia but also has Aphasia, which is simply that the language center of his brain has been impacted.  He can no longer communicate in a way that makes any sense.

For instance, this sentence may come out of his mouth “It was really  interesting today.  The thistle came out of a grain and was car.”  Or, “did you see the biddle up the nickel?” Most of the time, I have no idea what he is trying to say to me.  But he clearly thinks he is communicating something and would like a response to either keep the conversation going or to answer his question.

The technique I have used is very much improv at its core, which is based on the concept of “Yes, and?”  Most of the time I answer with “really! Tell me more!”  And that gets him to continue talking.  I feel as if I can get him to continue to talk to me that is a win.  He feels as if he is expressing himself and occasionally I can decipher what he actually means, through context, and we can have a meaningful exchange.  Some days are better than others.  In fact, one day recently, it was as if he had an awakening of sorts.  He was making connections he hadn’t in awhile, remembering facts from the previous day, which is next to impossible for him typically and was able to talk on the phone with relatives fairly easily, again not typical. It was short lived, however, as it usually is, and the next day I was back to using my improv skills.

I am so lucky that my father has a pleasant personality, still smiles and laughs at himself and the staff where he lives generally enjoy him.  That, unfortunately, isn’t typical with Dementia.  I am hopeful that his personality will carry him through this terrible disease and that he will be smiling and laughing until the end

Oy is right. Those 100 days of skilled nursing may be a mirage thanks to new Medicare Initiative.

Oy

During this journey, I have felt as if I keep tripping over new information – critical information that families should be made aware of, but instead I find out the info by accident.  Apparently just a couple of months ago – a.k.a. before my dad fell and broke his hip but AFTER he fell and fractured his pelvis – Medicare expanded a new initiative they had started a couple of years ago.  This year, the expansion INCLUDED orthopedic practices and specifically hip and knee replacements.

The way it USED to work is when you fell and had to have hip replacement surgery, you would receive up to 100 days of skilled care, as long as you were making progress in therapy (and also assuming you had been out of the system for 60 full days – see prior blog post).

Now, with this new initiative, Medicare has decided in advance roughly how long it should take to rehab a person who has hip or knee replacement surgery.  Medicare takes the time they think it takes a 90-year-old and the time it takes a 50-year-old and then averages the period into something in the middle. They do not take into consideration any co-morbid conditions, which most 90-year-olds have, nor do they consider the additional complication of Dementia.

So, for the purposes of this explanation, let’s assume Medicare says it should take a person 20 days of rehab to recover from hip surgery….if the nursing home disagrees, and keeps a patient on for longer, then the Orthopaedic practice gets less money.  Next time they have a patient to send, perhaps they won’t choose that nursing home.  The nursing home, which was trying to do the right thing now goes out of business. Furthermore, this is a system that ultimately does not benefit the patient.

Let me explain further.  In a bundled payment environment, Medicare has decided, in advance, how much a hip replacement should cost, including hospitalization, skilled nursing, and home care. The physician’s practice is given a bundled payment for all of those services and then they hire a management firm (in my case, Remedy out of CT) to manage the various vendors involved in my father’s care. The incentive on paper is to make sure that no one is keeping my father on too long to milk the system (I am guessing).  The sad byproduct of this, of course, is that patients like my father, who may need a bit more time than the average, due to his co-morbid conditions, will end up two ways:

  1. He will be pushed out of skilled care before he is fully ready and,
  2. The nursing home, which has done an excellent job with my dad will be penalized if they keep him on until he is fully ready

And the real victim, of course, is the patient:  my dad.  If they discharge him before he is ready, he will be back into the system sooner than later.

3 Things I have Learned From Taking Care of My Dad

lefthand

When you take care of the elderly, it is 100% on-the-job-training.  There is no manual.  And what you encounter…well, you just can’t make this stuff up.

A little background first…my dad has Parkinson’s Disease.  He had been treated with the standard Parkinson’s meds for years but this past summer, after his first fall and fracture, we took him off this medication as we thought it may have been the cause of his fast onset of dementia-like symptoms.  At the time, we were operating as if he had fallen into a state of temporary delirium, something that is quite common with the elderly after the trauma he had experienced with this fracture and subsequent hospital stay.

The symptoms didn’t go away, however, but his Parkinson’s symptoms came back with a very loud roar, so last week, we re-started the Parkinson’s medication.  With Sinemet, the gold standard in Parkinson’s meds, a patient takes a dose throughout the day.  As the medication wears off, the symptoms return.  Therefore, when you are incorporating rehab into your day, you’ll want to time your session shortly after another dose of the medication is taken.  Not rocket science, yes?

LESSON #1:  DON’T ASSUME THE LEFT-HAND KNOWS WHAT THE RIGHT-HAND IS DOING

I found out, quite by accident, that the therapy folks were not coordinating the timing of their sessions with my dad with the nursing staff, who were giving him his medication.

LESSON #2: YOU HAVE TO BE OVERSEEING EVERY DETAIL OF YOUR PARENT’S CARE. YOU ARE THE KEEPER OF THE “BIG PICTURE.”

And finally, it is, I believe, impossible to take care of your mom or dad from afar.  I did this for about 10 years before I finally put my foot down and moved him across the country to be near me. You cannot possibly manage someone’s care properly unless you see them frequently, attend doctor’s appointments with them etc.  I also believe that after the age of 75, it becomes nearly impossible for a person to consider moving.  They begin to operate their lives using visual cues more and taking them out of their familiar environment can really throw them cognitively.  We are all living longer and eventually, we will all be dealing with this period in our lives.  My advice…and one I plan to follow…is to move near your kids (or whomever you have designated to be your healthcare proxy) before the age of 75.  That way, you get to enjoy being near them before you become so needy.

LESSON #3:  MOVE YOUR PARENT CLOSE TO YOU WHILE YOU CAN STILL ENJOY HAVING THEM NEARBY

My father never wanted to move. He gave me all the standard lines:

I have lived here for over 50 years;  my friends are all here;  I’d be a burden.  The usual statements you are likely to hear.

Here’s the truth:

  1. If you live long enough, as my dad has, many of his friends will pre-decease him.
  2. If you  move when you are still young enough, you’ll have the opportunity to make new friends.  If you wait too long, and you develop dementia, or Alzheimer’s, you won’t be making friends as you will be too compromised to do so.
  3. The burden story?  We all become a burden to our kids at some point.  It’s part of the circle of life.  It would have been SO MUCH BETTER to have had my dad living near me for at least 5 years prior to his slide into dementia.  Taking care of him without the benefit of those happy memories to draw upon – well, that’s where it feels like a burden.