Tuesday, May 29, 2012

AB 2039: Expanding the Definition of Family Under CFRA -- Immediate Help Needed

For the last two years, Sandre Swanson (D-16) has introduced legislation to expand the definition of family under the California Family Rights Act (CFRA).

The definition of "family" under the Family Medical Leave Act (FMLA) and the California Family Rights Act (CFRA) currently includes caring for parents, children under the age of 18 or a spouse.

Most people are surprised to learn that siblings, adult children and grandparents are excluded at this time.

Last year, I wrote a post about this issue but felt I wasn’t doing enough. The “advocacy” part of Robert’s Sister wanted to do more but the bill introduced last year died in the Assembly. I kept in contact with Jenya Cassidy, a California Policy Director for the Labor Project for Working Families, which is an organization steadfast in their support of the expanded definition of family as well as other issues affecting working families. 

I offered to assist in any way possible when AB 2039 was introduced this year.

Last week, Jenya and Netsy Firestein, Executive Director of the Labor Project for Working Families, asked me to join them in talking with a few staff members of the Assembly. AB 2039 was in the Appropriations Committee and they were doing what they could to get it passed out of the committee and on to the Assembly Floor.

I enthusiastically joined Jenya and Netsy and spoke to a staff member of the Speaker of the Assembly. It was exciting to be at the Capitol (although I think the hordes of elementary school children on their field trip to the Capitol may have slightly beat me in the excitement department).

We left information for another Assembly Member and crossed our fingers the bill would make it out of the “approps” committee. Ms. Firestein shared this was Assemblyman Swanson’s third time trying to get this bill passed and she optimistically enthused, “Third time may be the charm!”

Her optimism paid off – the bill made it out of committee and to the Assembly floor and is expected to come up for a vote by the entire State Assembly this week (as early as today!).

In order to continue this momentum and move this expanded definition of family further along the process, your help is immediately needed.

Join me in supporting AB 2039 by either calling or faxing your Assembly Member and asking for their vote in support of AB 2039. You can find your Assembly Member here

Thank you for your support of AB 2039 and, let’s hope, the third time really is the charm!

Wednesday, May 23, 2012

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.

Wednesday, May 16, 2012

Who Knew Hospitals Had Roller Coasters?

California Adventure: California Screamin
Let’s get this out there: I do not like roller coasters.  I will go on them to push myself outside of my comfort zone but I am terrified during the ride.  Afterwards, I may say I was glad I pushed myself but can’t actually recall if I’ve said I’ve enjoyed the experience.  (My denial defense mechanism is working just fine!).  

During my 50th birthday celebration at Disneyland and California Adventure, I went on “California Screamin.” 

I was so frightened I couldn’t talk once the ride was over.  I’m not kidding.  I couldn’t scream, couldn’t talk and could barely move to exit the coaster car. 

Give me some ice cream and let me sit down before I faint. 

This week has felt like a roller coaster: Sunday, Robert seemed to be doing better and everyone thought the antibiotics were doing their job.  Monday morning, one of the residents was visiting Robert and going through the usual questions and chest exam.  Robert was working on his word search puzzle while the doctor and I talked about how Robert seemed to be improving. 

Without moving his pen toward the paper, Robert asked me to help him write the number 10 next to a word (Robert likes to find the hidden words then count how many letters are in each word.) 

I was very confused because this is something Robert does several times a day.

You can write the number, I tell him.

Staring intently at the paper with pen in hand for several long moments, making no motion toward the paper, Robert says, “I’m trying to but it seems I can’t.” 

The bottom dropped out of my stomach.

No matter what I said to him to coax his hand to move the pen to paper, he couldn’t do it. 

From the shocked look on my face, I’m sure I didn’t need to tell the doctor that was not typical behavior.   Between this and the extreme sleepiness, it seemed there might be something besides the infection going on. The doctor assured me they would keep Robert in the hospital to figure out what was wrong. 

I’ve sort of lost track of days but since then, an EEG was done, another chest x-ray was taken, more blood was drawn and the neurology team was consulted.   There wasn’t a change in the EEG results from the last one taken about a year ago.  The blood cultures weren’t growing any bacteria and the chest x-ray showed about the same amount of fuzziness as the first one. 

Some good signs.

Finally, Robert was more like himself today.  He can’t move around as well as normal but he’s been lying in a hospital bed since Friday so his legs are very weak.  A physical therapist has walked with him for the last couple of days and I’m hopeful he’ll get back to his baseline soon. 

The doctors now think it just took a while for the antibiotics to fight the infection Robert had and that the infection had impacted his cognitive function since, after a couple of brain surgeries, medications and a lifetime of seizures he has very little “cognitive reserves” to deal with an infection. This does make sense to me and I know how Robert's cognitive and physical abilities have been compromised in the past due to an infection.

The great news is Robert may be released tomorrow.  My worry is the infection will return as soon as he finishes off the antibiotics.  I’ve already warned New Home they will have to be hyper-vigilant in order to monitor Robert for any signs of an infection returning.  I’m going to ask the doctor to write an order for them to check his blood pressure and temperature a few times each day for the next few weeks so we can quickly catch any signs of a return of the infection (because New Home, of course, has to have a doctor tell them to do these things).

I’m focusing on the good news and keeping my mind off of the roller coaster.  I’m ready to be done with this ride for a while and imagine Robert and my family is too. 

Maybe it's time for some ice cream and a little rest. 

Sunday, May 13, 2012

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 . . .

Friday, May 11, 2012

Total Extremes

I wanted to write a quick update and promise to update you more later.

Yesterday, Robert and I were interviewed for a nationally aired AARP produced for PBS TV program "Inside E Street." Woohoo! It was exciting and nervewracking and I joked with Robert that he was a TV star.

He loved it.

During the interview and time with him yesterday I noticed he was more sluggish than normal (dragging his foot more, falling asleep a lot). He stayed with us last night and I chalked it up to being tired from his big day.


He woke up this morning with a fever and coudn't do basic things like sit up without assistance or follow directions like "can you put your hand on the walker?"  My husband (wow, thank goodness for my husband!) and I got him cleaned up from his leaky brief and changed his clothes.  I gave him some Tylenol and had him go back to sleep for a bit but we're going to have to take him to the hospital. 

There's a problem and it just might be the fever but I don't want to take any chances.  Plus, he just had a fever and was on antiobiotics two weeks ago.  Something isn't right. 

I'll keep you posted.

Tuesday, May 8, 2012

The Spring Wardrobe

Robert and his Spring Wardrobe
The weather is warming up so Robert is finally ready to wear his short sleeve shirts and keep his coat in the closet (well, we’re still working on that – he really likes to wear his coat).  Robert is very particular about his shirts so I’m always on the lookout for shirts that are button down, have easy buttons to manipulate, have a front pocket on the left and are some shade of blue or solid white. 

Since buttons are getting more and more difficult to manage for Robert, I was thrilled to find Buck and Buck which I briefly wrote about a few months ago.  I was first told about this clothing company from a fellow caregiver who needed clothing that zipped up in the back so that her mom with severe dementia couldn’t wiggle her way out of clothes and her protective brief.

I’ve ordered long sleeve and short sleeve men’s shirts from Buck and Buck and have been extremely pleased with their products.  More importantly, Robert is pleased too and has even branched out to include a red shirt in his wardrobe!

Buck and Buck is based in Seattle and has a variety of clothing for the disabled and elderly.  They also don’t do any advertising.  How in the world do they stay in business without a marketing budget?  By word of mouth, a reliable product and the best customer service a person could ask for. 

The shirts Robert uses are closed with Velcro but have the buttons on the outside so the shirt looks like any other dress shirt.  It makes dressing that much quicker and easier for Robert and undressing is done even quicker.  In fact, when I first showed Robert how the Velcro shirts worked, he carefully watched me “button” the shirt with the Velcro and then laughed at me “ripping” the shirt open to “unbutton” it. 

The shirts are practical and amusing.

My most recent order for Robert’s short sleeve shirts was placed one recent evening but I received a call the next morning from the customer service representative.  Apparently, I ordered two different kinds of shirts and the rep politely asked me if I actually wanted to do that.  One shirt was meant to be worn completely buttoned up (which covers up the Velcro) and the other was to be worn slightly open at the collar without any Velcro showing.  Did I mean to order two different shirts?   Um, no and thanks for calling.  Obviously, this caregiver needs all the help she can get.

Talk about good service!

Because I don’t want to keep this company a secret and (selfishly) want them to be in business for a very long time, I’m passing the word about this caregiving friendly company.  Please pass along their website (www.buckandbuck.com) to anyone who may need special clothing for their loved one.  (And, no, they didn’t pay me for this post).

I’d love to hear about your experiences with this company.  If you know of any other caregiver friendly companies, please let me know so we can spread the word and keep these businesses thriving!

Sunday, May 6, 2012

Spilling the Family Secrets

After my mom died, I started writing a book about caring for her through her earlier depression and then as she succumbed to the cancer mercilessly thriving within her.  It took me ten years to write which, even by my perfectionist standards, was a tad on the lengthy side. 

I did wonder why it took me so long to write.  Sure, I had the usual (okay, the excessive) disclaimers but maybe there was something else that hindered my ability to finally call it “done.”

This book was something I was bursting to write.  I hoped the experiences I shared of growing up with a depressed mom and (most likely) bipolar father would help others in similar situations. (Having a brother with epilepsy didn’t even seem not “normal” to me).

As a family, we kept these things to ourselves and took care of the inevitable problems that resulted from these challenges ourselves. 

Then I wrote a book . . .

Both Mom and Dad had died when I published the book.  Dad knew I was working on it and assumed he would figure prominently and even joked about some of his most outrageous antics that should be included. He had started to read a few things I had written before he died but was always either effusive with the encouragement or indifferent.  (Dad never experienced what it was like in the middle of the road – always to one extreme or other). 

In the back of my mind, I was concerned about hurting his feelings with the book.  I was also very aware of how Mom would feel about it if she were still alive.  (I can see how this stops people from writing memoirs!).  I knew the book was written with love but didn’t want to hurt anyone’s feelings.  Growing up in a family concerned with appearances, this was a huge struggle for me. 

There isn’t forgiveness in the book but only because there is nothing for me to forgive.  We went through suicide attempts (Mom) and 3-day mental health holds (both Mom and Dad) but they had always tried their best so why would I have to forgive them?  There was nothing to forgive.  What we experienced was just part of what happened in our family, without malice, and I knew we all loved each other.  Forgiveness was an unnecessary part of the experience. 

I quieted my internal disclaimers and my concerns about hurting anyone’s feelings and hesitancy to spill the family secrets. 

I took a deep breath and published the book.

Then people started buying the book. Friends, acquaintances and extended family. 

Oh crap.  The extended family.

What would they think?  I loved my extended family and would never do anything to hurt them.  How would they feel about me opening the basement and letting everyone see what was down there? 

I don’t know for sure yet.  I did receive a very heartfelt letter from a couple members of my extended family. They both read the book and shared with me some tragic parts of their lives that I hadn’t known about.  I was honored they shared their own childhood experiences with me and hope sharing those experiences helped them in some way. 

Everyone has a story to tell and I like to listen to these stories.  My intent in telling my own story was to tell it with love and understanding and to let others know they are not alone with their family secrets – no matter what those secrets are.  What happened in my own family is nothing compared to what others have experienced but we all have something. 

Since publishing Forever a Caregiver, I’ve heard from many people who have said my book helped them realize they were not alone because they had similar childhoods.  They’ve told me this book that took me years to not only write but find the courage to actually publish, has helped them process their own experiences. 

These responses and those from my immediate and extended family make this ten year investment completely worth it. 

If you have a story (or family secret) to share, I would love to listen.  Acknowledging these experiences and sharing them can take away the hold they may still have on you. 

If you’d like your own copy of Forever a Caregiver, please visit here