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.