Sunday, March 18, 2018

Coming Up For Air

Well, not really.  That’s actually wishful thinking on my part but I had this title in my mind for a month when I really thought things were settling down.   

Ironically, I started writing about Robert when I began caring for him but stopped (no – let’s say paused) because I was caring for Robert.  My original intent was to keep family and friends up to date and then I realized there was a lot of caregiving information to share as well as people who followed along after falling in love with Robert. 

And now I am neglecting this space!
Robert and Carol - before getting sick

Please don’t take it personally.

Let’s catch up!

Carol (grandma, great-grandma, #1 mother-in-law and most stubborn broad in the universe) was hospitalized in November and came to temporarily live with us while she recovered. She has a variety of health issues and it is best she stays with us. I think she should stay for good but she’s stubborn (as I mentioned) and refuses to think of the arrangement as permanent.  Fine.  We’ll be on a week to week trial basis if that makes her feel better. 

Richard (husband, co-caregiver, Mr. Macgyver, chronic pain sufferer who doesn’t let it get him down and #1 brother-in-law) has been dealing with a non-healing, expanding wound on his lower leg. The doctors have sent him to wound therapy specialists, tried all kinds of wraps, antibiotics (because of recurring infections) – even maggot therapy!  (That was as disgusting yet as fascinating as it sounds.) 

Richard with his good luck angel from
our friend, Pegi
After 14 months of this wound continuing to grow, they finally suggested a skin graft.  We were very hopeful Richard’s leg would finally heal and his pain would go away.  Make no mistake: this wound was extremely painful. He usually had to clean it twice a day which meant scrubbing it (yikes!).  There was a great deal of screaming (from him) and a lot of hoping the neighbors didn’t call the police on us (from me). Surgery would be a welcome relief for everyone!

Surgery was a week and a half before Christmas but he was out and home before Christmas and our hopes were high for a successful graft.

Robert (most excellent brother, word search king and Family Feud fanatic) woke up with a fever and cough on Christmas.  We had a house full of family over to celebrate so loaded him up with his fever reducer and antibiotics that we keep on hand for just such occasions.  By the end of the day, Robert could not even stand.  It took both Other Brother and I to take him to the bathroom and keep his legs under him so I could change his brief. We got him to bed and hoped the antibiotics would kick in by morning. 

Yeah, that didn’t happen.  (This isn’t a sitcom, after all.)

Richard had a surgery follow-up appointment the next day so his brother, Mark, and Carol stayed with Robert while I took Richard to the doctor.  Robert was safe in bed but still running a fever. 

The leg was looking good!  The doctor was very pleased and thought the graft had taken “98%”!  Woohoo!  We were ecstatic. 

As we waited for a prescription, Mark called to tell us Robert was burning up.  

Oh, crap.  So much for the antibiotics.  I had Mark give Robert more Tylenol and we hurried home. 

By the time we got home, Robert was not breathing well so we had to call the paramedics.  I try to avoid hospital stays but this was unavoidable.  Thank goodness we did send him to the hospital because, as it turned out, he had the flu and pneumonia along with a strange skin bacteria that caused sepsis!

I couldn’t believe how quickly Robert went downhill.  The hospital was the best place for him for now. 

The last week of December passed in a blur but, as it happens, my birthday is that week!  Richard and Rachel (fabulous daughter, animal lover and person who can make me double over with laughter) made my birthday extra special. After visiting Robert in the morning and talking to the doctors, we had breakfast at one of my favorite restaurants. Carol and my BFF came to make the breakfast even more special. Afterwards, Rach took me for a surprise spa pampering session which was just what I needed. 


Within a few days it was New Year’s Eve!  Robert continued to recover in the hospital with IV antibiotics, Richard’s leg was almost like new and none of us had caught the flu from Robert.  Carol was having issues with her blood pressure dipping too low and was very tired but the flu seemed to have bypassed all of us.


The three of us had a simple dinner and while I was doing dishes in the kitchen and Richard was stretching his back in the living room, we heard Carol coughing in the dining room.  Then a loud thud. 

It took us a second to rush in to her (she drops things all the time and gets irritated if we immediately come running.  Remember? Stubborn!). 

I got to her first and she was out cold. And bleeding from the head.  I yelled for Richard to call 911 while I shook Carol to wake up – all the while thinking she had a heart attack and had died.

It took a minute but she woke up and we did what we could to figure out where the bleeding was coming from (her head? her nose?) and stop it.  Paramedics came and Carol was alert and coherent.  It didn’t appear to be a stroke but was probably from the darn low blood pressure.  She passed out and hit the corner of the wall which caused a gash or two.  Since she is on blood thinners, there was a lot of blood. 

Off she went in the ambulance with Richard following close behind.  I stayed home to clean up what looked like a crime scene. 

Did I mention all the blood?

Happy New Year. 

January was spent shuttling between hospitals (you didn’t think Robert and Carol could be in the same hospital, right? That’d be too easy!  At least the hospitals were just a few miles apart though.)  Carol was released to a care facility to get physical therapy where she promptly got the flu. 

Back to the hospital for Carol. 

Robert enjoying a field trip to the hospital cafeteria
Robert had to have long-term antibiotics so had a picc line installed in his neck since his arm veins were shot.  He went to the physical therapy rehab floor of the hospital and eventually came home.  Carol soon came home too. 

Have I lost you, yet?  Let me recap: of the four people living in our house, three were hospitalized within three weeks of each other. 

(This blog could be super short if I just stayed with the recaps.)

Somewhere in there, I got sick too (but not get-to-a-hospital sick), orchestrated an office expansion/move for work and we converted Robert and Carol’s bathroom tub to a walk-in shower (thanks to Matt, #1 son-in-law). 

I was hoping for some downtime after the office move and all the hospitalizations. Who wouldn’t!

Richard’s leg still had a spot about the size of a quarter that wouldn’t heal so that became a bit worrisome. Carol’s cough continued while she also still declared she would be returning to her own home very “soon.”  Robert again became sick with a high fever and ended up in the ER.  This time it was a respiratory virus so it had to run its course.  It dramatically affected his breathing, though, and he had to be on continuous oxygen, even after returning home. 

It is the middle of March and I am sitting in the office I now share with Richard so Carol can have her own room (temporarily, of course).  Richard has a second skin graft scheduled for later this month but it is outpatient surgery and not a week long hospital stay.  Carol has her cough again/still and has been sleeping a great deal but at least her blood pressure is normal.  Robert still has a bunch of congestion but we are keeping up with his pulmonary health exercises and his vitals are fine. 

I think this is the moment I can come up for air. 

It is just a moment but I will take what I can get. 

Richard and I taking a breather

Sunday, November 12, 2017

Epilepsy Awareness Day at Disneyland

I am already thinking about Epilepsy Awareness Day at Disneyland 2018.  That’s what this event does to you – it inspires, educates, supports and leaves you feeling all gooey inside!

And that’s not just from the Mickey Mouse Rice Krispy chocolatey goodness treat that I had to have on Day 1.

This was the fourth year Richard and I took Robert to EADDL and the event gets better each year. Friends and family attend with us which makes my heart oh so happy! We meet new people who are affected by epilepsy in some way.  Families travel from England, Australia, Florida – you name it and I’ll bet that state or country was represented. (If it wasn’t this year, it most likely will be in the future.)

I know it is not always easy for families to travel to such an event but there was not one person complaining. It is not easy to travel with someone who is disabled and may need to go through an extra security screening at the airport. Or someone who might have a seizure (or be worried about having one) on the plane or at the event. Or someone who needs to organize a week’s worth of medication.

I worry that I won’t bring enough briefs or bed pads for Robert.  I worry that all the excitement will cause him to have seizure clusters (the last few years the event did cause seizure clusters but this year he only had a few sporadic, minor seizures).  I worry that it will rain (and we all know Robert melts in the rain). 

I worry that I am not getting the absolute best deal on the flight or the hotel. (I practically have a panic attack when making travel reservations because I am so fearful I am going to pay more than I should!)

My worries do not stop me from going but they do prod me to be very, very organized and prepared for any (and I mean any) contingency. 

What if Robert ends up in the hospital and we have to stay a few extra days? No problem: I bring a few extra days’ of medications (and have the nearest pharmacy and hospital listed on my itinerary).  What if Robert leaks through his brief at night? No problem: I bring enough pads to spread under and on top of him (thankfully, he’s a good sport about it).  What if pneumonia strikes again? No problem: I packed his at-home supply of antibiotics and his inhaler (and have his pulmonologist on my phone’s “favorites” list).

That’s what these families do: prepare, prepare and prepare and then take a leap of faith it will all work out.

And it does.

These families inspire me so much! I met many moms and dads with young kids with epilepsy; a grandmother traveling with her grandkids who have epilepsy; a single mom with her young adult son who has epilepsy; parents with adult children with epilepsy; friends attending with a friend who has epilepsy. 

We get to meet other families who have taken this leap of faith to attend and it leaves such a smile on our hearts that we cannot wait until next year.

I even met one young lady who was at California Adventure by herself who had epilepsy. She hadn’t heard about Epilepsy Awareness Day at Disneyland but tapped me on the arm, pointing at my t-shirt and said, “I should be a part of your group. I have . . .”  Epilepsy?  “Yes! I have epilepsy too.”

We stopped to talk with her for a few minutes and she said she had been seizure free since 7th grade and was now in college. She was delightful and sweet and I told her about the event and suggested she attend next year. I introduced her to Robert and she told me about the medication she was on that allowed her to remain seizure-free. She suggested I talk to Robert’s doctor about it and I thanked her for the information.

If we hadn’t been wearing our Epilepsy Awareness Day shirts she may never have known how many people were just like her.  Of course, I worried about her being at the park alone because she had an innocence about her that I was afraid people may take advantage of.

I recognized that innocence because Robert has it too.

Our encounter was brief but she left an impression. 

That’s what this event does too.

This event brings people together and gets rid of the stigma that epilepsy still has associated with it.

So dust off your worries, start your planning and preparing and join us next year at the annual Epilepsy Awareness Day at Disneyland and Educational Expo. 

Mark your calendars for November 5, 6 and 7, 2018!!

Hope to see you there!

I better start my search for the best travel deals – it’s never too early!  

Saturday, September 23, 2017

Be Careful What You Ask For

Unbelievably, I received a request to complete a survey about Robert’s recent stay at Gramercy Court.  A day later, I received a statement showing a past due balance for the amount I paid (and was later refunded) for Robert’s stay.

Oh boy! Corporate America – form letters will be your downfall!

I took the opportunity to send a short email to the President and CEO of Generations Healthcare which is the large corporation that owns and operates Gramercy Court.

Good afternoon, Mr. Olds,

I received a letter asking me to complete a survey about my brother's recent stay at Gramercy Court in Sacramento.  I also received a bill for a past due balance.

Obviously, there has been a huge mistake in sending me both of these items which really shouldn't surprise me given the recent, horrific experience my brother had while staying at Gramercy.  I had hoped the experience was safely tucked away in the back of mind as a nightmare never to be relived again. 

Apparently you are unaware of this but, because the experience was so horrible, I was refunded the amount I already had paid.  I do not owe anything.  Please remove this outstanding balance on my account. 

In addition, the experience my brother had while staying at Gramercy for only four days should not be experienced by anyone.  In fact, it was anything but "warm and helpful" as stated in your letter inviting me to take a survey. 

You are welcome to read about Robert's experience here and about my follow-up with the Dept of Health Licensing Division here. I'll cut to the chase: The Dept of Health found deficiencies in your facility which I hope have been corrected by now. 

Further, I hope that you do truly believe "caring for the sick, the elderly and the infirm is a special and sacred stewardship." Unfortunately, the quality of care received by my brother showed a complete disregard for basic rules of care let alone the lofty goal of "sacred stewardship."  (I am happy to send you the cringe-worthy photos of the bruising on my brother due to the lack of attention paid to him during his stay.)

You, sir, have a long way to go to realize your goals of quality care. 

I am happy to discuss this matter in more detail with you in order to help you improve the care received by others in your facilities.  As far as my brother is concerned, Generations Healthcare will not be caring for him ever again. 

Thank you for your time.

Saturday, August 5, 2017

Advocacy for the Win!

Whoever says the government doesn’t act quickly has never met the Licensing & Certification Program (L & C) within the California Department of Public Health. 

On July 12 I filed several complaints with the L&C regarding Robert’s respite stay and by July 31 they validated my complaints!  (At least a few of them.)

Advocacy for the win!  (At least a partial win.)

The investigation involved reviewing my claims, the photos of Robert’s injuries and documentation of the incidents, interviewing me, visiting Gramercy Court (the Skilled Nursing Facility involved), reviewing their files and conducting interviews at the facility.

When I first talked to the investigator, I was not sure how the investigation would go.  She started with my first complaint of Robert being injured due to two falls in four days and not being properly watched.  Her first comment was that Skilled Nursing Facilities are understaffed and it is unrealistic to expect someone to be watched 24/7. 

Are you kidding me?  The licensing agency is excusing a SNF because they are understaffed? Isn’t that a problem to be fixed?
Rach, Robert and Trish (l-r)
at the State Fair for some fun

Of course, I took a breath before saying anything to her.  (I am only a hot-head in my own head.)

Yes, I understood how understaffed SNFs are; however, I think it is reasonable to expect some sort of plan to minimize falls for a person that is a fall risk.  I explained Robert is in a wheelchair and needs assistance in transferring and in the restroom.  I told the investigator that this was made clear when I admitted Robert to the facility. 

She then explained how the investigation works and acknowledged getting my photos and follow-up documentation.  She said they will investigate the falls and the procedures the SNF has for preventing them and handling of them if they do happen.  She said she will look into why my request for the fall reports was delayed and will investigate the medications issues.

She explained they have no jurisdiction over my getting a refund.  I knew that but thought I’d throw it in to my complaint.   (Oh, by the way, after promising me a refund, Gramercy has not sent me one.)

The investigator explained that I would be told the outcome of the investigation once it has concluded. 

While she went to work on the case, I kept an eye on Robert’s bruise.  It had developed a hard lump under the skin which the doctor was slightly concerned about.  The doctor ordered an ultrasound so I kept Robert home from his Day Program and we went to the ultrasound.   Robert was having a terrible cluster of seizures that day on top of his ultrasound appointment so that was a not-so-excellent day (contrary to Robert saying it was). 

Robert is feeling excellent
and loving the State Fair!
Thankfully, Robert’s seizures eventually stopped and the ultrasound did not show any internal damage, bleeding or clots.  One less thing to worry about. 

I tried once again to ask for my money back.  My email was left unreturned and no one was “in the building” to accept my call. 

I knew filing a complaint would most likely result in me not getting my money back but I did not want that to stop me from trying to get changes made at the facility.   Robert was only at Gramercy for a short stay so the point of my complaint was to force them to make changes so this does not happen to another resident, whether they are short- or long-term. 

When the investigator called on July 31, she explained they found two deficiencies from their investigation.

1.   A fall risk assessment was not done upon admission nor was a fall risk plan instituted upon admission even though they had notice that he was a fall risk;

2.   A care plan was not developed after the first fall;

A few days after talking to the investigator, I received their formal letter with their findings.  The letter states they completed the investigation and “substantiated your complaint.” Further, “L&C validated the complaint allegation during the onsite visit” and the provider will need to document “their plan/s of correction.”

Yes!  I knew they could have done better!  Changes will have to be made!

I will make changes, too, when taking Robert for a future respite (although I have soured on that facility so he will not be returning there).   I knew admissions seemed disorganized but now I know a few more things to look for when taking Robert in for a respite stay. 

As far as the complaint about the medication schedule, the investigator could not find that the medication schedule was attached to the doctor’s orders originally faxed to the facility.  My schedule was in Robert’s chart but the medications were only sent in a list from the doctor without specific times to be given.  I did not see a copy of the doctor’s orders but know they had the schedule.  I think they only attached his medication list and not the schedule the medications should be given. 

This whole thing was a learning experience for me.

I know better than to think the nurses will follow the schedule I have worked so hard to develop with his doctors unless it is included in the doctor’s orders.   Robert’s doctor was very upset the nurses didn’t follow my schedule or even question it when it didn’t correspond to her orders. 

But I know this! I know this is how they work! I have gone through this before and absolutely should have double-checked that the orders included the medication schedule. 

Definitely a learning experience for me. 

At the next appointment, I will talk to Robert’s doctor so she knows the nurses will not deviate from doctor’s orders – regardless of information they have from the caregiver.  She is a terrific doctor and does so much for her patients and their caregivers and I am sure she will appreciate knowing this and change the way respite orders are written for her patients. 

Now that my complaints have been validated, I will try again to get my refund.  Not only was the care given not what I had paid for but I picked Robert up early so he wouldn’t continue to be injured! I paid for more nights than he was actually there. 

(Update: The refund came in for the full amount of the stay and I didn't even have to ask again.  Not surprisingly, the check was dated the same day as the conclusion of the investigation.)

Refund or not, this was a win.  A WIN!  Changes at Gramercy have to be made because problems were brought to their attention and care for other residents will be improved because of these changes. 

Advocacy for the win!