Juggling, Teamwork and a Little Hope

My IT guy at work juggled three oranges at work the other day and made it look pretty easy.  (I then told him to get back to work.)  I have tried to learn to juggle but I am not quite coordinated enough. The juggling I do involves caregiving, medical appointments and various emergencies. 

Caregivers are experts at this type of juggling and sometimes even while we work. 

Thankfully, Richard helps with juggling our appointments.  We have a loose division of duties: he takes his mom to her appointments, I take Robert to his, Richard goes to his own and I go to my own.  (Hopefully, mine will be short-lived.  My MRI results came back normal(!) and I only have a follow-up with the neurologist. Then I’m crossing myself off the appointment list!)

Family!

We have pre- and post- surgery appointments, wound therapy, neurology, epileptologist, GP, pulmonary, ENT and cardiology appointments.  There’s pain specialists, physical therapy, lab work and x-rays when something is not quite right (like suspected pneumonia or artificial knee pain).

With the regular appointments and even ER visits or hospital stays we somehow manage to keep on track.  (It helps that Richard, Carol and I coordinate our calendars to be sure we all have the same information.) 

Sometimes we have to call in extra help, though.  Richard’s brothers, either Mark or Jim, will take Carol to her appointments if they conflict with one of Richard’s appointments.  Rach jumped in to take me to the ER so Richard and Carol could stay home with Robert and has stayed home with Robert while I pick up Richard from the hospital. Mark and Carol jumped in to help with Robert when he was sick and I needed to take Richard to get staples out of his leg.  

In other words, we juggle.

And we are very lucky. We are extremely fortunate to have the support of our families as I know many caregivers do not have that option. 

I am extraordinarily grateful to our family for their help and, while it is difficult for me to ask for help, sometimes I actually do it.

Robert has a VEEG (video EEG) coming up next week which requires him to be in the hospital for five days.  It also requires someone to be with him all the time.  As in, day and night.  To be clear, I am talking about all 24 hours in a day.  For a week.  And, we have to be alert and awake the whole time in order to push a button when he has a seizure.

I do tend to take on a lot but even I realize neither one of us can stay awake all week.  Heck, I don’t even think it would be possible for just me and Richard to do it.  (Although, that was our initial plan.)

I texted Other Brother for help.  I explained the situation, told him I was making a schedule and asked if he was able to come up to be with Robert for a shift.

“You mean like through the night?”

I know.  It’s a big ask.  It would be nice to have an extra relief person so Richard and I weren’t doing the whole week.

“How long are the shifts?  Are there any food or bathroom breaks?”

I gave him more info about how the whole thing works, logistically.  Of course, I am just going off of the booklet the hospital mailed us – I haven’t actually done this before so don’t know how it will actually go.  I mean, does the nurse come in and poke us if we accidentally doze off?  Does the guest chair trigger alarm bells if there’s no movement for a few minutes?  Or does it just spring us out of the chair to wake us up?

After ribbing him for all of his questions (as only an older sister can), Other Brother offered to take two of the overnights which was a huge help. I thanked him profusely!

“Can I take a laptop?”

Oh crap. I thought for sure this was a deal breaker. 

Um, no.  No laptops or phones.  We can’t have the signals interfering with the monitoring equipment.  I did suggest long bathroom breaks if he had to use his phone . . .

Carol and Robert share a special bond

I created a schedule for the three of us and sent it to Other Brother.  He reviewed it with his wife who suggested he stay in a hotel for a few days so he’s not driving back and forth on no sleep.   He can do his shift, sleep in the hotel, drive the hour or so back to home/work and then repeat it the next day. (Good thinking!)  Other Brother revised the schedule, adding another overnight shift for him with even longer hours.  What a wonderful surprise and such a huge help!

Carol is planning on holding down the home front and doing laundry and caring for the dogs while Richard and I take turns at the hospital and I try to go into work for an hour or two.  In fact, she feels ready to move back to her own home but is postponing it so she can help us out. (We wish she wouldn’t move home but that’s a different story.)  Rach and Matt are planning visits to the hospital to check on us and to the house to check on Grandma.  Mark even offered to take a shift but he recently started a new job and I don’t want him missing work on our account. 

We are very lucky indeed!

We all see the value in the VEEG and know how important it is for Robert to have this testing.  This is a step toward getting the Neuropace for Robert which seems to be a very promising treatment for him!  Robert’s new neurologist thinks he is a great candidate for the Neuropace and thinks this could significantly reduce his seizures.  If that happens, he might even be able to reduce some of his meds.  Can you imagine?! 

Everyone is willing to pitch in because we all see the possibilities of this new device.  We see the hope.  We see Robert’s fervent wish and prayer to be seizure-free as close to possible as we’ve been. 

This is truly a team effort of juggling to support each other.  That is what family is all about and I am so grateful. 

Welcome Back, Robert

Sometimes there aren't any good decisions in caregiving. 

Mail call! A card and bookmark from Carol

Decision number one: Do we send Robert to the hospital?

Robert couldn’t walk.  I mean he couldn’t even turn his legs to transfer from getting out of bed to the wheelchair. I could see him thinking about it.  I could see that he really was trying to get his brain to tell his leg to MOVE! but the signals got crossed and he just couldn’t do it.  

I called his neurologist who had just seen him the previous week and explained that his decline was even worse than before.  Since they had suspected a compression of the nerves in his neck, I was advised to send Robert to the hospital.  It seemed to be the quickest way to get the MRI done in order to confirm that diagnosis and if it didn’t confirm it, to figure out what exactly was going on.

We all know how that went.

Every time Robert goes to the hospital there is a significant decline afterwards and a significant amount of work involved in getting back to baseline.  Usually he falls just short of baseline so we end up with a new baseline.

I don’t take sending Robert to the hospital lightly. Partly because I am selfish and realize the post-hospital decline not only affects Robert but me and Richard too.  (There has to be honesty and self-awareness in caregiving. It helps.)

Robert couldn’t walk so there really wasn’t a choice for me.  My concern was if there was a spine compression and he was losing mobility so quickly, what more could happen?  He needed answers as soon as possible so the paramedics were called and the ER wait ensued.

A wonderful surprise from a Guardian Angel!

Decision number two:  Do we take Robert home or find a rehab facility that provides physical therapy?

Um, he’s been in a hospital bed for over a week and couldn’t walk when he arrived.  I’m pretty sure he still can’t walk and has now lost muscle strength.

Richard and I were already past the point of being able to care for Robert.  The decline happened so suddenly (or felt like it) that we just did what we could to keep up.  Sometimes even to our own detriment.  Like the time Richard physically lifted Robert from the wheelchair and moved him to the bed (and then suffered through extra back pain for several days). 

Let’s go with a rehab facility.

(It helped tremendously that Robert was completely agreeable to this plan. Many times when making caregiving decisions, the caree and caregiver are at odds at what would be best.  That makes the decision-making even more difficult.  It’s just the worst.)

Decision number three: Which rehab facility do we use?

Our first option for Robert was to get him in the hospital in-patient rehab center. I was told some of the new doctors/residents don't even know about it.

Even though many of the nurses and a couple of the doctors and physical therapists raved about this in-patient rehab center they all warned me that Robert would have to be evaluated by a team and they would be the ones to decide if he could be admitted there. 

If he was accepted it would be so easy!  The hospital would discharge Robert and then wheel him to the rehab center (which was in the hospital but not considered part of the hospital). He would get checked in and they would do 3 – 4 hours of rehab per day!  Wow! 

The goal would definitely be to get Robert able to move and transfer so he could come home.

It felt like an exclusive, secret club and I wanted entrance granted for Robert. Please, please, please!

One doctor evaluated Robert.

Then he came back with another one.

They asked Robert questions, then asked me questions.  Dang it – I don’t even know what they are looking for so am stressed out about giving the “right” answers.  Plus I didn’t have time to study!!!

After a while I realized they were not going to accept Robert into the program. Wait – I want to change some of my answers!  “He probably won’t be able to meet the goals we set each week.” Could you please just try him out to see?  Maybe he’ll surprise you! 

In my heart, I knew Robert couldn’t tolerate 3 – 4 hours of physical and occupational therapy. I mean, his favorite time at Day Program is when it’s Recliner Day.

This now means we have to scramble to find a rehab facility.  The discharge planner helps with this and sometimes you get a really great discharge planner who goes the extra mile and sometimes you get one who just does things by the book. 

The entire hospital stay has been challenging so it did not surprise me that the discharge process was not smooth. I expected it to be smooth because I usually have a terrific experience at discharge but not this time.

The discharge planner gave me several options for Skilled Nursing Facilities that have physical therapy programs to accommodate Robert.  I asked her which ones she would recommend. She couldn’t say. 

Okay, give me a hint. Sounds like? 

Instead, she asked me if I had a particular one in mind. 

No! I’m asking you for help to find a good one.  She did help by sending out an email to all SNFs, giving Robert’s info and asking if anyone had availability. She referred me to the www.medicare.gov site so I could check ratings. It was some help but it wasn’t anything extra. 

This would have been a good time to have someone doing something extra.  I was frustrated. It had been a long two weeks (or close to it) and I just wanted someone to make this decision easy for me.

That wasn’t to be so I got on the phone and called a few facilities.  I contacted Robert’s Day Program for references.  I called Robert’s case manager at his Regional Center. I checked ratings, checked availability and checked what the PT schedule would be. The last thing I want is to choose a place that is going to just let him lie in bed all day and do 10 minutes of physical therapy on occasion.

After all of this, the place I settled on is a place Robert has lived before. When I first moved Robert to Sacramento, he went to a SNF for about two months then I moved him into a Residential Care Facility for the Elderly.  He was there on a waiver and under an exemption (since he is in his forties).  Robert lived there for a couple of years and enjoyed it until we ran into some problems with the management and it was apparent that Robert and the facility were not the right fit for each other any longer. 

It was not easy choosing this facility but I knew he would be in the SNF portion of the facility and not the Assisted Living area.  I knew that management had changed since Robert last lived there (a few times, actually). I hoped that the familiarity of it would somehow aid Robert in regaining mobility.

I even thought the Universe was trying to tell me something.  The SNF had an available male bed; the PT department was stellar and could work with Robert two hours a day for 5 – 6 days a week (which seems doable for Robert); the location was halfway between home and work and there was a bit of comfort in going to a familiar place. 

Robert was on board with whatever place I chose.  He told me he remembered this place but I’m not sure he does. 

Once we arrived, I didn’t recognize anyone but the intake social worker remembered Robert. Robert said he remembered him too. Who knows if he really did but it makes me feel better that Robert at least thinks he remembers this place (and fondly).

Robert happily settled in while I pushed away the thought that if this doesn’t work out I have no one but myself to blame.  After all, I know the problems we had here before but I am optimistic the Universe knows a thing or two about what is best.

Decision number four: Having faith in the caregiving decisions I have made. 

Working on it. 

Passing Time in the ER

Robert came into the hospital last Tuesday.

I am pretty sure today is Monday and, yep, we’re still here.

Rocky Road makes the wait much easier

Anyone who has spent any time at all in the hospital or visiting anyone in the hospital or knows anything about hospitals knows there is one constant: waiting. 

We are waiting for an MRI with sedation (because Robert has back pain when he is lying flat so can’t stay still during the test).

We are waiting to find out what is causing his rapid decline (why he can’t walk; why he is sleeping all the time; why he can barely circle his words on his Word Search puzzles).

We are waiting for doctors and blood work results and theories.

We are waiting for physical therapists, occupational therapists, answers and a plan.

On Tuesday we waited for eight hours in the Emergency Room before being admitted and getting wheeled to his current room. We have had longer waits in the Emergency Room so eight hours seems long but not unheard of. 

What kind of crazy world do we live in that an eight hour stay in the Emergency Room doesn’t seem too bad? 

I think the problem was we came into the ER on a Saturday night.  Oh, wait, no – we came in on a Tuesday afternoon.  A Tuesday afternoon and Robert was first put in a hallway and eventually a room. 

Where we waited and the doctors ignored my insistence they call the neurology team which is what his neurologist wanted.  She specifically told me the team would be notified before I even brought him to the ER!  Call them, please! 

It took four hours for the doctors to finally decide to call the neurology team and this was after me asking them to do so; telling them to call them; calling them myself and finally unloading on a medical student (who had repeatedly told me she was a fourth year med student).

Congratulations!  You’re in your fourth year of medical school! Let me just ask you to please, please listen to the caregivers when they give you information.  Caregivers know their caree.  Caregivers will give you all sorts of information about what is baseline for this person you’ve never seen before.  Since you’re a student, it is a good thing to learn early on that caregivers can be a huge help and resource to you!  Now, Please. Call. Neurology.

I felt better after giving my little speech.

And neurology showed up soon after.

While Robert and I waited in the ER, Richard arrived with new energy and a smile.

What a welcome sight!

Richard went to get us food which turned out to be the best grilled cheese sandwich I’ve ever had.  (Although it could have been the starvation influencing my judgment.)  Regardless, I was beyond grateful for Richard getting us the food so I wouldn’t miss the opportunity to talk to the doctors.

Robert tried to pass the time working on his puzzle book but had trouble circling the words.  He slept during part of the wait and I stepped into various hallways on a search for internet access.  I finally was able to text by creating the text then holding my phone up in the air in a particular hallway and sending.

Whatever works.

Waiting allows me time to find these creative solutions.

Waiting also gave me time to talk to Robert to ask him silly questions.  He had a purple band on his wrist which the hospital had put on him upon arrival. 

I like the color purple, Robert!

“I do too.” 

What is your favorite color?

“Blue. I like yellow too. And purple.”

I knew he loved blue but didn’t realize he liked yellow and purple.

What is your favorite food?  (Of course, I expected to hear “cheeseburger” or “combination pizza.”)

“Steak and Lobster.”

Wow! Someone likes to live high on the hog!

What is your favorite drink?  (This is an easy one – he’ll say chocolate shake for sure!)

“Sprite.”

What?  Anything else?

“7-Up.”

Well, okay, but I still think chocolate shake is his favorite drink!

What is your favorite dessert?  (Everyone knows this answer!)

“Chocolate candy.”

Oh goodness.  Robert must be really sick if he doesn’t even rank Rocky Road ice cream as his favorite dessert!

What about ice cream?

“I love ice cream.”

What kind?

“Chocolate.”

The long wait is obviously turning his brain to mush. 

What about Rocky Road?

Robert's eyes lit up. 

“I LOVE Rocky Road ice cream.  It is deeee-LISH-us.”

We eventually made it out of the ER and into a room.

Where we wait for an MRI with sedation and answers and theories and plans. 

And where I sneak in a little bit of Rocky Road to help with the wait.  

Robert’s Turn in the Hospital

October cannot come soon enough.

My husband, Richard, was in the hospital for four days after Labor Day (most spent in the ICU), thanks to an inadvertent drug overdose by his doctor.

 

Robert when he was in the ICU - feeling better!

Robert was pretty sniffly that week and I half-joking said to my daughter that Robert was going to end up in the hospital by the following week.

DEAR UNIVERSE: I PROMISE NEVER TO JOKE ABOUT THAT AGAIN!

By the time Richard was home and recovering, Robert’s sniffles turned into a cough. I took him to the doctor on Friday who prescribed antibiotics but by Friday evening, he was pretty sick. I slept on the family room couch (in Robert’s room) and woke up every two hours to take his vitals.

He has had pneumonia and sepsis before so I knew what to watch for: extremely low blood pressure and high pulse rate. His pulse rate was high but the blood pressure remained in the “okay” range.  Robert’s fever spiked around 2:00 a.m. and I debated about calling the paramedics but the fever came down with Tylenol.

Through the night, his congestion worsened and his lungs sounded awful.  I tried to get him to cough up whatever was in there and by morning, even had him get up to get cleaned up. He was weak but not as bad off as he was last April. 

When Robert is sick, he progresses to “oh crap” very quickly so I called the paramedics and got ready for their arrival. Richard and I sat Robert in his walker in the front room, making it easier for the paramedics to access him. I also got my handy cheat sheet ready to hand to the EMTs.

Robert was in the Emergency Room for a few hours and sent for x-rays. Once he got back from x-rays, his blood pressure started dropping and he was significantly less alert. I notified the staff about the difference and they gave him more fluids while preparing to send him to a regular room.

Once Robert was transferred, it didn’t take long for the nurse to realize he should be in ICU. She called the Rapid Response team who called ICU and he was transferred again. 

All the while, I am talking to the staff about their protocols and what constitutes “sepsis” (a blood pressure with the systolic number below 90 is one trigger for a diagnosis of sepsis).  I am no nurse but I do want to know what to watch for at home and want to add to my “advocacy arsenal” for the future.  So I take notes and listen and soak up as much information as possible.

Robert was in the ICU from Saturday afternoon until Monday mid-morning. He is now in a regular room and will most likely be in the hospital the rest of the week.

I know he’s feeling better because he is asking for a chocolate shake! He is still on a clear liquid diet but as soon as he can eat regular food, we will bring him his favorite drink.

Richard and I have been taking shifts at the hospital so we don’t miss any information from the doctors or respiratory therapists. Robert is not a reliable self-reporter so it’s important we are there to let the nurses and doctors know if he’s having any problems.

(No matter what, Robert will say he is “excellent” when asked.  That’s not exactly helpful or accurate when he’s lying in the ER with a fever of 102 and pneumonia.) 

I think we all need scorecards to keep track of what’s happening so here’s a recap:

Richard was in the hospital four days; Robert has been in for five days so far for a total of nine days spent in the hospital this month and counting;

Robert has had pneumonia and sepsis three times in sixteen months (twice in the past five months);

Our puppy has torn up countless newspapers because he’s confused why his routine is messed up; Where’s Dad? Where’s Robert? Where’s Mom?

Robert is several days behind on eating Rocky Road ice cream and chocolate shakes.

Me? I’m going to have a spa day every day for a month when this is all over.

For Caregivers: Tips for That 911 Call

It is no surprise to anyone that caregivers have to stay on their toes.  Keeping the calendar up to date and keeping on a schedule is a fantastic plan.  I schedule in extra time before any appointment to allow for anything unexpected.   This extra cushion usually allows enough time for a complete change of clothes and a seizure (never knowing when either will strike).   Throw in an unexpected fever or problem finding parking (or both) and, well, my carefully laid out schedule becomes wishful thinking.  Thankfully, this kind of perfect storm is rare and we make it to most appointments on time.

Having to make a call to 911 is taking the unexpected to a whole different level.

Planning for emergencies and the unexpected mean we caregivers always have to be ready for them.  We have to be on our toes.  With Robert, this could mean a change of clothes due to a failure with his protective brief or it could mean he has a seizure that lasts for three minutes with several minutes of confusion and fatigue afterwards. 

It could also mean a trip to the Emergency Room (although, thankfully, this is rare for him).

I was grateful to have been ready when we woke up not too long ago and realized Robert needed to go to the hospital.  Robert had woken up with a fever and had trouble holding his glass of water to take his medication.   I gave him something for the fever and he went back to sleep for a bit.  When he woke up, he had trouble sitting up on his own and was still running a fever. 

My husband and I could have gotten him to the hospital on our own but it would have been difficult.  We made the decision to call 911 and I was happy we did, considering his blood pressure was shockingly low and he was eventually diagnosed with sepsis and pneumonia.  After a week in the hospital and two different kinds of IV antibiotics, he is out of the hospital and getting back to his old self.  

Robert doesn’t go to the hospital very often (knock on wood!) but it is helpful to be prepared in case he ever does.  Because it’s difficult to think straight when a loved one is so sick that emergency personnel need to be called, here are a few tips to help prepare for the unexpected:

1.        Keep a bag packed for your caree so you can grab it on your way out the door to the hospital (or keep it in your car).  I keep a bag packed for Robert with a change of clothes, extra protective briefs, wipes and medical gloves.  This bag has come in handy when we are out and about and Robert has a bathroom accident.  What I realized I forgot to include in case of a trip to the hospital was basic toiletries.  Those will be added to the emergency bag.   I grabbed Robert’s word search puzzle, pens and glasses on the way out the door as well but it would have been helpful to have an extra set of these in the bag too. Everyone needs a bit of entertainment when they’re feeling better! (Plus, I never know when Robert will run out of pens!).

2.       Create a one page medicine list/contact sheet.  I have all of Robert’s medical information typed on one page including his medical record numbers, insurance information, address, emergency contacts, contacts at both the care facility and Day Program as well as a list of medications (and the medication schedule).  Some people may not be comfortable including the social security number or insurance information but I wanted a document with all of his pertinent information readily available for me.  If Robert had assets or a credit rating to protect, I wouldn’t include his birthdate or social security information either.   Print several copies and keep the document up to date.  I was grateful I had recently updated his list and had copies on hand to give to the Fire Department, the paramedics and the ER doctor.  They all asked the same questions about medications and all were grateful to have one sheet of paper with all of the information.  It also allowed me the ability to concentrate on telling them what was wrong with Robert instead of what medication he takes or when he was born and gave me a list to consult when reviewing his medications with the hospital staff.

3.       When talking with the 911 dispatcher, remain calm (it’s a stressful situation but relaying information in a panicked state just compounds the situation).  Give the operator information about what is happening and any chronic condition of your loved one.  I told the operator Robert has epilepsy but had to correct her when she assumed he had a seizure and that’s why I was calling.  At the end of our call, she read seizure precautions to me which I listened to and thanked her for the information.  I then politely asked her to add information that people cannot swallow their tongue during a seizure so to advise them not to place anything in their mouth.  (My motto: educate and advocate!).  

4.       Keep a bag packed for you, too.   I regretted not grabbing a book and my phone charger before leaving the house on the way to the hospital.  There were plenty of times a good book would have been a welcome distraction and by the time I was leaving the hospital that first night, my phone was in the red zone.

In the next post, we’ll talk about how to be an advocate while your loved one is in the hospital.  Please share in the comment section what you do to prepare for the unexpected or that 911 call.

Robert Update



How bad can it be? He's got his puzzle book and a shake!

The first thing I want to tell all of you is how much I appreciate the outpouring of support and concern from everyone.  (I've been posting quick updates on Robert's Facebook page www.facebook.com/robertssister if you'd like to follow and check in with us there too). 

Robert was admitted to the hospital on Friday. There was some debate about putting him in ICU or a regular room and he was kept in the ER for several hours until they eventually settled on a regular room with Telemetry monitoring.

His diagnosis: pneumonia in the right lung and Sepsis.

Google Sepsis and you'll know why this scared the crap out of me.

They started him on antibiotics (two different kinds) but yesterday and today his fever has ranged from "normal" to over 100 degrees. That may not seem like much but for Robert with his diminished cognitive reserves, it takes a huge toll. His blood pressure is low anyway but since Friday it has fluctuated from low to holy-crap low.

Today, they took more blood to run culture tests and also took another chest x-ray. I've been at the hospital all weekend in order to talk to the doctor when he does rounds in the morning and also through the shift changes so the nurses are able to meet me and I can reiterate certain details about Robert: give him his meds on time and he won't have an increase in seizures, he has seizures but doesn't convulse during them, he enjoys his food so it may take a couple of hours to finish his tray.

The important stuff.

He certainly seems better but not out of the woods yet. I am comforted by the fact that he's in a regular room and, when he's not sleeping (which he has been a LOT), he's joking around and working on his word search puzzle.

I have so many things to write about this whole ordeal including a difference of opinion with Other Brother about how necessary it is to stay at the hospital all day long since nurses go to school for a reason as well as a few beefs with New Home (shocker!) but will save those for another day when I'm not quite so tired.

Thank you all for your support and well wishes and thoughts and prayers. I've told Robert that he has a lot of people praying for him and thinking of him and hoping he gets better.

His response: a simple "thank you."

More later . . .

Good News and Better News

Here’s a news flash for you: Life doesn’t hand you one situation or problem at a time! Can you imagine how easy it would be if things worked that way? What would we do with all of our time if that happened? Many, many caregivers are either serial caregivers or caring for more than one person at a time. (According to a survey done by caregiving.com more than 26% of the respondents were currently caring for more than person at a time.).

Today, though, was a day for good news! Robert’s neurologist read his recent EEG results and said they were very similar to the results from a few years ago. Obviously, they’re not “normal” but they’re normal for him! So we know from the MRI Robert hasn’t had a stroke and we know from his EEG that his brain activity is stable. Woohoo!! This is really good news! The EEG and the MRI don’t explain why Robert’s memory and balance is worsening but I think we can safely assume that the seizures play a huge part in the decline and, in my very biased opinion, so does New Home. I can’t do anything about the seizures but we’re working on the problems with New Home by having Robert come live with us. I met with the contractor last night and so we are moving along with our garage conversion!

We found out even better news today, though, about my wonderful mother-in-law, Carol. She has been through a horrible time this past year: stroke, heart attack, speech and physical therapy, valvuloplasty, infection from the valvuloplasty and now bloody fluid on the lungs.

Uh oh.