Tuesday, June 19, 2012

Five Ways to be an Advocate When Caregiving

Caregiving. Family. Advocacy.

When I created “Robert’s Sister” I added these words to sum up what I was all about.  (Please understand that for someone who tends to ramble, boiling down my purpose into three words was quite an exceptional feat).

To me, advocacy goes hand in hand with caregiving (which is just fine with this former Greenpeace rabble rouser).  

When Robert was in the hospital with pneumonia and sepsis, my advocacy tendencies were on high alert.    It started with the 911 call and taking the opportunity to ask the dispatcher to add a bit more information to the script she read about seizures.  

We are given plenty of opportunities to advocate when our caree is in the hospital, visiting the doctor or even while living in a care facility.  For me, advocacy doesn’t mean being a pain (or worse) but I will stand my ground if necessary.  Since I’m not a huge fan of confrontation, this can become a bit uncomfortable but it is definitely for the right cause – my loved one’s health.

There are several ways to advocate for your caree but these are my favorites:

1.       Educate Yourself.  Learn as much as possible about your caree’s condition so you feel confident enough to educate others and you are able to better advocate on your loved one’s behalf.  I love learning as much as possible about epilepsy, research, treatments and caregiving.  There’s always something to learn!

2.       Educate Others.  Robert has told me his purpose in life is to educate others about epilepsy. He lights up when people ask him about his seizures or epilepsy and will tell anyone who is interested, stories about his brain surgeries or seizures when he was younger.  When Robert meets a new doctor or nurse (and he met several while in the hospital), I briefly explain what his seizures are like because most people equate “seizure” with convulsions and I don’t want them to miss a seizure if they are looking for the wrong characteristic.  (Or miss an opportunity to catch him since he gets very still then will fall down if he’s standing).  It’s a great opportunity to let people know there are several different kinds of seizures. Sometimes people ask follow up questions which is a wonderful chance to educate about your cause, caree, condition (or all of the above).

3.       Take Notes (copious notes).  The notes I took while in the hospital actually prevented Robert from being discharged too early.  On the second or third night, the nurse had been inundated with patients and tasks and was unable to write her reports until the end of her shift. Because she had been overwhelmed, she neglected to accurately record Robert’s vitals.  I had diligently recorded his vitals each time they were taken and was able to show my notes to the doctors when they excitedly walked in talking about how Robert didn’t have a fever the previous night. They quickly stopped talking about discharge once they saw my notes.   

My husband takes this one step further.  He helps his mom with her numerous medical appointments and he has created a binder for her which includes all office visit summaries, lists of medications, contact information – anything that might be needed at the next visit or when seeing a different doctor. The binder has come in handy on numerous occasions when a physician treating one condition needed to know something about one of her other conditions.

4.       Communicate.  I made sure I was at the hospital for each shift change so I could meet the nurse who would be on staff.  After a few days, I finally figured out their schedules (boy do they work hard!).  I asked the doctor for clarification if I didn’t understand something he said. I asked what medication Robert was being given and went over Robert’s seizure medication orders with each shift.  They eventually got used to me being there constantly and no one had a problem with me asking questions.  In fact, the staff told me on more than one occasion they preferred more family involvement than less.  The last person who is in a position to communicate to the hospital staff is the patient who is sick, tired and medicated.  The patient needs an advocate to keep information flowing to and from the staff.

5.       Don’t be afraid to question.  Doctors are very smart.  They’ve been to a gazillion years of school even if they do look like they’re 20 years old. They have knowledge I only wish I had.  What I have for them is knowledge about my caree.  I know Robert’s baseline behavior – sleepy but not so sleepy he can’t keep his eyes open.  I know Robert will tell the doctor he is “doing excellent” when in fact he is running a fever.  I know Robert will wake up with a wet brief and soaking wet sheets. I also know the doctor is wrong when he tells me Robert has to go off all of his seizure medications because his Valproic Acid levels (liver enzymes) are high.  It’s situations like this when I can’t be afraid to tell the doctor that he is incorrect and he needs to check with Robert’s neurologist first (the neurologist is treating Robert for the high Valproic Acid levels and, it turns out, the test was run too close to the time he got his medications, falsely elevating the levels).

It can be difficult to tell a doctor “no” but it is essential to caregiving.  If something doesn’t seem right, at least ask questions. Find out why the doctor is making the decisions he or she is. Get a second opinion if necessary.

Just remember, no one knows your caree like you do and no one can advocate on their behalf like you can.

These are just a few ways to advocate for your caree.  I’d love to hear ways you have advocated for your caree.  Please share in the comment section and then get out there and advocate!

Tuesday, June 12, 2012

Everyone Loves a Party!

Hospitals, pneumonia and sepsis are behind us.  This past weekend was all about a party!

My hubby, Richard, and I have two daughters (his and hers) who are two months apart.  Step-sisters so close in age?  Yikes!  Sounds like a disaster in the making!  It hasn’t been – not even close.  They don’t just tolerate each other, they are best friends. Richard and I constantly shake our heads at our good fortune.

On Saturday, we celebrated their college graduation and couldn’t be prouder. 
Yummy and adorable!
(Well, I was actually pretty proud we were able to make these adorable chocolate graduation caps.  So easy even I could do it – thankfully, with a little help from hubby.).

We had enough people at the house to be grateful for a big backyard, an extra borrowed barbeque and college kids who know how to be comfortable in large, noisy crowds with barely enough seating. (Nice to know that college tuition was not wasted!).

A little tip: It helped to have invested in a five dollar table Ping-Pong set, a few red cups and a couple bottles of beer which turned out to be worth hours of entertainment.

A few days before the party, I called Robert to tell him I will pick him up early because we were having a graduation party for the girls.

He gave me his usual response of, “That sounds good” but sounded excited he was coming over a little earlier than usual.

There’s going to be a lot of people at the house, Robert.

Robert’s words don’t change but the big smile through the phone is evident. “That sounds good.”

Richard is going to barbeque hamburgers and hot dogs.

“That sounds really good.” Ha! The promise of one of his favorite foods gets him very excited about the weekend. 

Even though Robert didn’t deviate from his routine of sitting on the couch doing his word search puzzles (yes, during the party), he seemed to enjoy the commotion and the extra conversation and the food.  Definitely, the food. “The food is excellent” was his response to anyone who asked.  Followed by, “Can I have some Rocky Road Ice Cream?” (Some routines can’t be changed.)

The girls were relaxed and happy all day, visiting with friends, family and neighbors and probably more than a little thankful finals were a distant memory.

Even the dogs ran around soaking up the attention and way too many scraps of food (my protests to the brothers-in-law falling on deaf ears).
Congrats, girls!
Having a house full of people and hosting big parties is one of my favorite things even though it’s chaotic and exhausting and, days later, I am still picking up confetti (every party needs confetti!).

The smiles, laughter and happiness filling the house – yes, even the chaos – while celebrating life’s milestones is what family is all about. (That and a lot of food!).

Congratulations, girls. You two make me smile every day!

Saturday, June 9, 2012

Caregiving Seminar in Sacramento: June 24

Caregiving.com is coming to Sacramento!

I’ve written about Caregiving.com before because I have found them to be the best online support group for caregivers. Having the availability of support online when the nature of caregiving can be so isolating, has been a comfort to many caregivers.

Denise M. Brown knows caregivers and knows how to provide support for them.  Denise founded Caregiving.com in 1996 and has built a wealth of resources, online support groups and a network of connections in order to selflessly serve caregivers.

Denise will be in Sacramento on June 24 to present “Telling Your Truth So You Can Build Your Team.” This workshop will provide the perfect blend of break, education and support for caregivers.

As an added bonus, lunch will be provided and there will be fabulous door prizes!  (The person in charge of the door prizes is awesome at putting prizes together so you won’t be disappointed!).

Denise says, “In this 90-minute workshop, you'll voice your truths -- about your experiences, your worries, your concerns and your guilt. In essence, you'll discuss your truths: The ones you wear on your face (“my public truth”) and the ones that weigh on the hearts (“my private truth”). Once you've discussed your truths, we'll help you form your team of support, so you can face your inner truths with action plans and solutions.”

The event will be held 12 – 3 p.m. on Sunday, June 24 in the clubhouse of the Country Squire Estates (720 Oak Hill Drive, Sacramento).

The cost for the lunch and workshop is $10 but is only $8 if you RSVP before June 15.

RSVP by June 22rd to Bette, bette@caregiving.com or register online at www.caregiving.com/june-24.

I hope to see you there!

Sunday, June 3, 2012

AB 2039: Expanding the Definition of Family Under CFRA – Update

There is still hope for AB 2039!

AB 2039 would greatly help working caregivers as this bill expands the definition of "family" under the California Family Rights Act (CFRA). The current definition of family under CFRA includes caring for parents, children under the age of 18 or adult dependent children or a spouse. The bill would expand the definition of family to include caring for siblings, grandparents as well as adult children who are not a dependent but who have a serious health condition. 

Your calls, letters and faxes to Assembly Members helped keep this bill alive! AB 2039 has passed the Assembly and is now in the Senate.

Thank you for your fantastic response to the request for action and thank you to the employees and supporters of the Labor Project forWorking Families who worked diligently for months to get this through the Assembly.

Now is the time to start calling or faxing your Senator and asking for their support of AB 2039.  You can find the contact information for your Senator here Check back for more updates on the progress of this important bill.

Thank you for your continued support of AB 2039!