MS Caregivers

Medicare -- After this, I think I need a Doctor!

Having terminated Jeanne's full-time caregiver and re-claimed the job as my own, I soon realized that life would require me to be out of the house on occasion and I wondered how I would handle that.  First, I differentiated between those trips away from home that were less than an hour in duration and those trips away from home that were longer than an hour in duration.  I decided that Jeanne could handle the "less than an hour" trips on her own.  So I was covered for the "life happens" trips -- supermarket, bank, dry cleaners, etc.  On to the "longer than an hour" excursions. 

Prior to her release from the hospital, one of the nurses told me that she thought Medicare covered home health aid activities.  I visited the Medicare website.  Here it is, verbatim: 

Medicare generally doesn’t pay for long-term care. Medicare also doesn’t pay for help with activities of daily living or other care that most people can do themselves. Some examples of activities of daily living include eating, bathing, dressing, and using the bathroom. Medicare will help pay for skilled nursing or home health care if you meet certain conditions.

Well, I thought that was kind of interesting in a self-contradictory way.  "Medicare doesn't pay for long-term care," followed by, "Medicare will help pay for skilled nursing or home health care if you meet certain conditions."  And so I called Medicare to find out what those "certain conditions" were. 

It turns out those "certain conditions" were very straightforward!  If Jeanne's physicians were recommending that a Registered Nurse visit Jeanne (which she does, twice each week) or that Jeanne should receive physical therapy (which she does, every week), then a home health aid could "stop in".  And so I further inquired, "Well, when would this person 'stop in'?  Here's what Jeanne needs assistance with:

• Feeding three times a day by means of her feeding tube
• Receiving medications 4 times a day by means of her feeding tube
• Being turned every 2 hours in the hospital bed we have set up for her
• Dressing
• Bathing
• Etc., Etc., Etc.

Not to worry, I was assured.  That home health aid would be there to handle all of this and more.  All I had to do was contact any one of the 52 approved service providers in my area!  And so I started calling these 52 approved service providers, and this is what I discovered:

• Only 1 out of 52 even knew they were "Medicare approved"
• Not one of them would take the assignment because...
• All of them had no idea of how or when or if they would be paid by Medicare.

And so I contacted Medicare again.  This time I was told, no...they don't provide home health care.  Except under certain conditions.  (This started to sound familiar).  So here's what we're going to try:

Jeanne's doctor has put in a new order for home health care.  A home health aid will come to our home and make a determination of how long she would be spending there, and then inform me of same. I honestly have no idea when or how this story will end.  For now, I'm still enjoying my role as Jeanne's primary caregiver.  Of course, the other night a couple of friends needed my command of obscure factoids to round out their trivia team, so I picked up the phone and called one of Jeanne's former caregivers and hired her for 3 hours that evening.  Jeanne slept through most of those 3 hours.  Our trivia team just missed placing in the money at the trivia competition (wait 'til next season!) and all was right with the world.  Necessity may or may not be the mother of invention, but it is certainly the mother of common sense. 

Stay tuned...

"You're Fired!"

No...this isn't Donald Trump doing a guest turn on the MS Caregiver blog. But I did have the opportunity to utter words to that effect recently when I terminated Jeanne's live-in caregiver. 

As I mentioned in my last post, Jeanne spent several days around the first of the year in the hospital.  I was there with her for about 12 hours each day and, as Jeanne slept through most of that time, I had a lot of time on my hands.  I used some of that time to observe and some of that time to think.  And that's how Jeanne's caregiver ended up losing her job.

While In the hospital, I noticed, above all else, the compassion that Jeanne's nurses brought to their job.  It influenced the atmosphere around them and affected everything that they did.  That's when I realized that although Jeanne's caregiver was technically competent in every way, she lacked the emotional connection to what she was doing...and Jeanne sensed it and shut down.

A couple of days after we arrived home from the hospital, I let our caregiver know that I was "making a change."  Sounds a little like a baseball manager going to the bullpen for a lefty doesn't it?  Anyway...our caregiver finished out the week and then moved out and moved on. 

I had also made a decision not to hire anyone to fill the caregiver position right away.  Instead, I hired myself and here's what I've observed in my first 2 weeks on the job:

• Jeanne has smiled more in the last 2 weeks than she has in the last 6 months.
• Jeanne's cognitive skills have improved.
• Jeanne's speech has improved.
• Jeanne's emotional outlook has improved.

In short, it's as if I got my wife back.  Is it because I'm the world's greatest caregiver?  Of course not.  Is it because I try to bring the same compassion to the task, as I observed at the hospital?  Yes...because that's the only change here.  I've been the "night and weekend" caregiver, so the necessary skills aren't new to me.  But Jeanne is asleep at night, and even for a good part of the weekend.  Being her caregiver during the times that she is most awake has made a huge difference.  And it's one that she acknowledges...which means that she's also capable of having conversations again and that's another HUGE bonus!

Is the moral of the story to quit your job, drop what you're doing and become a primary caregiver if you aren't already?  Not at all...it's not feasible for most and not particularly healthy for any of us.  And yes, I 'm fortunate in that I can do most of my work from home.  But for me, the lesson learned is to check the level of compassion a caregiver brings to their job.  And that's true whether the caregiver is you or someone else.  Because compassion heals.  It even heals those diseases for which they tell us there is no cure.  It's not a medical opinion, but I'd bet on it.

ER -- Drama or Comedy?

Jeanne's gastro feeding tube popped out on December 30th, requiring a trip to the Emergency Room at UCLA Medical Center to have it popped back in.  (Note to self...in the future, I will do everything humanly possible to avoid an emergency room visit during a major holiday weekend.  Whatever you may be thinking about the quality of emergecy room care during such a time...now matter how large you think you can conjure up that nightmare...please mutliply by 10X!)  Don't misunderstand -- everyone in the ER certainly means well, they are just completely under-staffed and overwhelmed. So they hire non-UCLA nurses and staff on short-term contracts to pick up the slack.  And I observed these "temp" nurses and staff having difficulties with everything -- from accurately taking a patient's temperature to moving someone 100 feet from their room in the ER to x-ray to taking a readable and usable x-ray.

After spending almost 12 hours in the emergency room, it was determined that Jeanne needed to be admitted to the hospital.  First, it seemed that she had a minor infection accompanied by a low-grade fever.  Second, although a temporary replacement to her feeding tube was provided in the ER, a permanent feeding tube couldn't be inserted for the next 4 days because the appropriate hospital personnel were all on vacation for the holiday.  Third, the swelling in Jeanne's left leg that our visiting R.N. from UCLA had pronounced as "nothing major...something to be checked out the next time you take her to the emergency room," had turned out to be a broken leg.  (Full Disclosure -- the nurse remembers this conversation very differently from the way I remember it)

And so our 15-minute procedure to replace Jeanne's feeding tube turned into a 4-day hospital stay.  During those 4 days, we watched Jeanne's minor infection improve, we waited to have someone -- anyone -- from Orthopedics talk to us about Jeanne's broken leg (that conversation ended up not happening), and we looked forward to Wednesday, Jan. 2 -- the earliest date possible to have Jeanne's feeding tube replaced.  Lots of waiting, watching and looking forward.

The good news is that Jeanne maintained her good spirits.  In fact, she was healthier during this hospital stay than in any of her previous hospital stays so, relatively speaking, it was a very low-stress adventure made up mostly of sitting around while the holiday season wound down and the hospital was actually open for business again.

I hung out with Jeanne in her otherwise-empty hospital room (it's hard to attract roommates during the holidays, I guess) and helped her pass the time.  And I can honestly say that for everything the emergency room seemed to be lacking in the way of quality care, the nurses in "5 West" were the polar opposites.  They were great.  And unrushed for a change.  And always smiling -- even though they knew they were among the very few in the hospital to be pressed into service over the holidays.

So that was how we spent our winter vacation.  I'm hopeful all of you fared better.  With so much time on my hands, I had a couple of interesting conversations with hospital personnel and Medicare personnel regarding which "home health aid" services Medicare actually covers.  But that conversation is still evolving into what will ultimately be an interesting post for every caregiver reading this blog.  Look for it in the next couple of days.

Meanwhile, Happy New Year!