It has been awhile. Lots has happened.

relievedI haven’t posted in awhile.  There is a reason.  After moving my dad back into Sunrise of Paoli around Thanksgiving, it was a great deal of work getting him back into a groove…to a sense of normalcy after spending two months in skilled nursing, in two different rehab facilities. Honestly, I wonder sometimes if he has any clue where “home” really is.

After about 3 months at Sunrise, with no further broken bones, I made the decision to move my dad to a facility down the road from Sunrise, called Daylesford Crossing. This is where I had wanted him to move initially, but because he was out in Iowa and couldn’t be evaluated in person….and because he was coming off of an pelvic fracture, he was a “two person assist,” meaning he needed two people to help him with just about everything. They rejected him.

The one positive thing to come out of his time at Sunrise was he had a chance to fully heal following his pelvic, then hip fracture. He is actually more ambulatory now than he was when he moved in back in August. I took a chance and re-applied to Daylesford Crossing….and he was accepted!

When I toured Daylesford Crossing (particularly now that I had the experience of knowing what assisted living in a memory care unit really was like), the difference was palpable.  The vibe was calmer, quieter.  The staff was infinitely better trained. They had a multitude of ongoing activities for the residents, both in the memory unit itself and within the building (which the residents from the memory unit participated along with everyone else). The atmosphere was vibrant, alive, filled with people having fun.  It smelled nice. I know that’s a silly thing to mention, but Sunrise always smelled a bit like urine. I attributed it to the fact that there were 26 residents, all wearing depends. You should know, however, that it doesn’t have to smell. If it smells, it’s because the staff isn’t doing their job.

The move went smoothly and my dad transitioned to his new home with very little issues. It is a great relief, for me, to have him living in a place where I can reliably expect the staff to take care of him.  I never had the confidence that that was the case at Sunrise.

The internal communication was abysmal. At Daylesford, they use the latest technology throughout the building, using iPhones for all staff, so people are easy to reach and messages get shared easily. You have no idea what a difference that makes to my confidence level.  At Sunrise, I would make a request to one person and they never shared that request with anyone else! There are three shifts of staff!  I ended up doing most of the work which they should have been doing…Making sure he had fresh batteries in his hearing aids, that he was wearing them daily, that he had a handkerchief in his pocket, that he got up to exercise daily…these sorts of things. I wasn’t asking for the moon, but it seemed to feel like I was.

I cannot over emphasize the importance of choosing a facility based on the following very important criteria:

  1. How is the internal communication?  Exactly how does it happen? Do they use pagers? iPhones?  Can you text someone? How often is email checked? What are their systems really like?
  2. Is the facility run well?  Do they review care plans regularly and adjust? My dad NEVER had his care plan reviewed despite his improving condition.
  3. If your loved one is in memory care, how much overlap do the residents have with folks who do not have dementia?  It is important that they feel they are a part of a larger community for entertainment, parties, etc. At Sunrise, it seemed as if the two units operated independently from one another. As a result, my dad was isolated even further.
  4. Look at the other residents who live in the memory unit.  Are they at a similar stage of dementia as your loved one?  DO NOT place your loved one in a community where they are the least impaired. They will quickly sink to the level of who is around them. Look for a community where they will have people who are at a similar stage of the disease.
  5. Look at the percentage of women vs. men.  In many of these communities the population leans towards female. Not an issue on the surface, but it becomes an issue when most of the activities revolve around doing one’s hair and nails and crafts.  My dad was never interested.  Make sure there are activities that your loved one might enjoy. Also – make sure that the activities are MODIFIED for those who have dementia. If you see the list of activities and they include crossword puzzles, bingo and more traditional games you might find in senior living centers, just know that these are not going to work with someone with dementia.  They have to be MODIFIED. This requires that the staff have REAL training in dementia.  At Daylesford, all staff are trained in the methods of Teepa Snow, a well-respected dementia expert.  Who does the staff training? What kind of training is it? Dig under the covers a bit.
  6. Look at the size of the bathroom.  Look at the shower.  Is there a lip on the shower that requires someone to step over?  Better to not have that. It can become an issues as they decline. The size of the bathroom is critical for someone who uses a walker or wheelchair.  My dad’s bathroom at Sunrise was so small that it was a real chore getting him in position to sit on the toilet because there was never enough room for the walker.
  7. Come several times to visit, at different times of the day. Are the staff interacting with the residents or talking amongst themselves. This was a real issue at Sunrise.  Most of the time, staff was sitting around a big table chatting with other staff, while the residents watched TV, which, as it turned out, was the main activity in the memory unit at Sunrise.  Even though they posted other activities, often those activities were never done. If you see a place with the TV on all the time, that is not a good sign. Do they have lots of music?  Music is something that can be enjoyed by everyone, even those in the latter stages of dementia.
  8. If you notice people are spending a lot of time in their rooms alone, this is not a good sign.  People with dementia cannot safely be left in their room alone for long periods.  They no longer understand what is safe and what is not.  Often they can be quite impulsive, in fact.
  9. Find out if there is a dedicated med-tech for the memory unit.  This is important as you want it to be easy to find this person if your loved one’s medicine is late in arriving.  Because one of my dad’s medicines needed to be given on time, I spent many hours wandering through the floors of Sunrise looking for the med-tech and because they did not have technology to reach the staff quickly, I was often given this response when I asked where the med-tech was: “Oh…she just went downstairs, I think.”  It was then up to me to find her to haul her back to give my dad his medicine, which I was paying them to do.

I hope this helps you as you evaluate facilities and that you can learn from my mistakes. I am so happy that I found a facility that is well-run, my dad seems happy and most of all, I believe he is finally being well cared for. If you have any questions for me about what to look for or if you are worried about what you are seeing, please feel free to post in the comment section.  I am happy to help guide you, if I can.

Ciao!

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.

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.

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.