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!