How
To Be a Health Advocate When A Loved One is Having a Medical Emergency
Many years ago, I had a boyfriend who was a pilot who
had a stroke at my house. He, his family, and his healthcare providers said I saved
his life. That seems so weird to say. I feel uncomfortable using those words. Because I just communicated effectively and anyone can do that. But I realized that not everyone knows how to communicate and be an advocate for a loved one in crisis so I want to share simple things I did that you can do if you are ever in that horrible situation.
1. I had a boyfriend who was a pilot. After we had been together a year, he took a job as a private pilot in another state without discussing it with me. I was blindsided. He said it was no big deal as he would still have a house here. He said he would just live most of the time in another state. We already had a lot of issues and the fact that he couldn’t understand that making this life-changing decision without talking to me was a problem. It was a last straw issue. I broke up with him.
The next day he appeared on my doorstep in his pilot's
uniform to try to get back together. He was going to fly that day on a commercial
airline to pick up the private plane and then fly it all by himself back to
Atlanta. He wanted me to go out to breakfast and talk. I said I wasn’t going
to change my mind, but breakfast was ok. We came back to the house. He wasn’t overly
upset and we talked about his trip that day. He started to look awful, and he
said he had a horrible headache and had trouble talking. I am an expert in body language, I didn’t know every sign of a stroke, but I knew some of them, and I knew him, and I knew he was having a stroke. I put my hands on his shoulders and looked him
in the eye. and said, I think you are having a stroke do you want me to call
911 or drive you to the hospital?
He couldn’t decide and he was in pain and went to the floor. I couldn’t lift him to get him to the car, so I dialed 911. By the time the ENTs came, he was in agony holding his head
writhing on the floor saying over and over again, “My head.” “My head,” I told
the three EMTs he was having a stroke and to take him to the hospital immediately.
They didn’t believe me. They showed no urgency. My ex couldn’t communicate clearly, and
I was his only advocate. I said, "Look at him." he is writhing in pain." I told them I know
him. I know his normal behavior, his baseline behavior. I know how he is when he has horrible back
pain. I said he does not take pain meds, bravely handles his pain, and keeps
working. I said he has never had a migraine. I told them through specific changes
in behavior that indicated this was a stroke. They didn’t believe me. They kept
saying it was a migraine. Sometimes we go with the professional opinion. Three guys in uniforms were certain they were right, I had to go against that authority to advocate for my ex.
I pointed out and repeated the behaviors that indicated it was a stroke, his severe headache, loss of balance, confusion, dizziness weakness, difficulty speaking, trouble seeing, lack of understanding, and altered mental state. (Other clues you can check for if you suspect a stroke; are weakness, facial paralysis, loss of sensation, and lack of reflexes.)
They also had me call his pharmacy to prove he wasn’t
on medication to cause his behavior or pain meds that might show he was acting
rather than in crisis in a bid to get pain meds. I convinced the pharmacy to
talk to us and share his medical history with the EMTs. I was really upset. I know drug addicts do crazy
things to get drugs, but it was so clear he was in pain and needed to go to the hospital immediately and they were delaying transporting him. I couldn't lift him to the car myself so I persisted.
I am only 5.1 and at that time I weighed less than a
hundred pounds, but I knew how to be a strong advocate, See my history of that below
this story. I firmly repeated yet again to them you need to put him in the ambulance right now
and get him to the emergency room. It took several repetitions, but they finally put him in the ambulance. They said they didn't think it was a stroke and they couldn’t give him the stroke medication I
knew you need to take that ideally in the first hour. They took him to his normal
hospital, which was over a half hour away even though I told them there are two
hospitals less than four miles from my house. But finally, they drove him to the hospital. They helped save his life.
I got to the emergency room a good 15 minutes before the ambulance. I had a lot
of work to do to get a neurosurgeon down to the emergency ready to see him when
he came in. I had requested the EMTs ask for that on their way, but they didn’t.
I had to sign off on a ton of paperwork allowing them to do testing and saying I would be responsible for his health care decisions. I spent the next half hour with my ex-boyfriend as he writhed in pain on the exam table trying to convince him that he was having a stroke so they would give him a brain scan and give him the meds he needed. Absurdly, they didn't know if his writhing agony and slurred speech were normal. I had gotten the Neurosurgeon there but he kept asking me if my ex’s behavior was normal, and if had he acted l like this before. I told him over and over NO. He kept asking. I told him what his normal behavior was in detail and what where the changes were today in detail. Thank god I know how to communicate what baseline normal behaviors are and how to track specific behavioral changes in the order of appearance. It shouldn’t be that hard to advocate for a loved one. They finally believed me.
Once they scanned his they told us he had intense bleeding in the brain and the pressure was causing damage he would be paralyzed, brain damaged, and or die. In fact, the neurosurgeon told us several times he was probably going to die or be paralyzed. It was just horrific. I asked what could save him and was told he needed a shunt (a hollow tube) to be put in his brain to drain the blood to decrease the pressure on his brain. He, neurosurgeon) wouldn’t do it. I kept saying please do it. It was so odd to be in this room with him in pain and the doctor and everyone clearly thinking and acting like he was going to die. That it was inevitable. I have wondered many times if because they saw how bad the bleeding in his brain was that they felt that his death was a better alternative.
I was on the phone trying to get a family member to fight with
the surgeon to get him to do it. I could only reach his brother-in-law, and he
refused to get involved or be held responsible telling me my ex was known for suing
anyone who irritated him. That was news to me. But I knew he could recover from
this if he got the best care, so I kept on advocating.
I had unfortunately been in this kind of situation before. I knew I needed to marshal my resources. So I was also on the phone trying to find help. I got on the phone with my good friend who is an occupational therapist for brain trauma patients for her advice. I asked her, “What can I do to save his life?” She shared that if/when he was stabilized, there are two brain trauma units in Atlanta, and he needed to get to one ASAP. I started to call them to get him transferred there. She helped save his life and I am so grateful for her. All the while I was calmly and firmly telling the Neurosurgeon to put in the shunt.
I knew my ex-boyfriend. I knew he
was strong bodies and strong-willed, that he worked out every single day, and
that he dealt with back pain. I knew he was a fighter and could recover so I
told the Neurosurgeon, all of these truths about him several times. They didn't know the brave man he was. I had to convince them to
fight for him as it was clear they didn’t think he would make it. Let me repeat that, it was clear to me that everyone in that room standing over him didn't think he would make it.
Finally, the Neurosurgeon had me sign another document and he put the shunt in. I realized that the doctor was taking a big risk to do this in an emergency room, rather than a surgical room, and increased the risk of doing it before my ex was transferred as the shunt could come out easily in the transfer. My ex showed immediate improvement. I am so grateful the doctor took that risk. He helped save his life. I breathed a sigh of relief as my ex was talking again and I knew he had a chance of a full recovery.
I can’t begin to describe the conversation I had with
the brain trauma units trying to convince them that he was savable and fighting
for one of the very few beds. I believe there were only 12 beds. I used every calm level headed technique I
could to convince them. He got a bed.
I kept calling his family, but they didn’t reply. I was
still on my own. The EMTS came back and transferred him across town to the
hospital with the brain trauma unit. I followed the ambulance. The EMTs complimented
me and said, it was clear I loved him and that I had just saved his life. At
the brain trauma center, they were very kind, but I discovered immediately that
he was the only patient in the unit who was conscious and that they were acting
like he was there to die. I finally got the on-call neurosurgeon in the room
and convinced him that my ex was a fighter and again signed a ton of paperwork. At this point it is important to share that I was very lucky they
were letting me, not his wife or family member sign off on the paperwork. They
took a big risk and so did I. They took exceptional care of him and helped save his life.
To be clear, I did not go back with him. He did fully recover and a year later we were having coffee in a coffee shop, and I saw his main neurosurgeon from the brain trauma unit come in and see me sitting with my ex. The look of shock on his face was stunning. The doctor pointed at the back of my ex’s head and gestured a question mouthing if he is ok. And I smiled and nodded yes. Again, he looked gob-smacked and came over and talked to us, sharing how stunned and happy he was to see such a miraculous recovery. I was told by the staff at the brain trauma unit that his recovery was a miracle. I always knew my ex would make it and that’s why I battled to save him. I stepped away from my ex after his full recovery but to this day he sends me cards to thank me for saving his life. He sometimes mentions that that day he was under so much pressure as he was about to fly a plane alone for the first time in years, and he was moving, if he hadn’t come to my house, he could have been on that plane alone, with the increased risk of the air pressure on the plane and had a stroke alone on the plane.
I recognized he was having a stroke. Know the signs of a stroke. Severe headache, loss of balance, confusion, dizziness weakness, difficulty speaking, trouble seeing, lack of understanding, altered mental state, facial paralysis, loss of sensation, and lack of reflexes.
2. I convinced the EMTs that he was having a stroke and not just a headache or a faking his pain for pain meds and insisted they take him to the hospital. Get your loved one cared for. Know their prescriptions.
3. I persuaded/fought with the neurosurgeon that he was having a stroke and was a fighter and to take action to save him, most critically to put in a stunt to drain the blood “on” his brain. Know how to stay calm focused and advocate.
4. I signed off on a ton of paperwork that his family refused to be responsible for that allowed him to immediately get tests, procedures and medication, and other care.
M My friend help save him by recommending great hospitals. I got the intake person to get him a bed in a top brain trauma unit rather than a regular hospital unit. Know the medical resources in your state and beyond and if you don't ask the staff to tell you and get them in.
6. I persuaded the staff at the brain trauma unit that if they fought for him, he would make a full recovery. Tell the health care providers about your loved one and their personality and even funny stories about them so they see them as a full person. I told the healthy care providers about my ex's great Italian cooking, his love of flying golf, and funny movies. I had experienced how humanizing my loved one helps doctors and nurses and other staff treat them with even more care.
Things to Think About
Prep
Have the signs of a stroke on your phone, written and up on your fridge in your beside the table and medicine chest, and in your glove compartment.
Have a list of all your loved ones' medications and permission from their doctors to talk to you. Have the phone number for THEIR pharmacy and all the doctors and any friends or contacts you know in health care. If your loved one is not your relative, have a list of their relative's names and numbers. My ex had told me the password to get into his phone. If I hadn't known it is would have been very hard to convince the EMT's this was not a drug issue.
Has the legal paperwork been done to be able to sign off on paperwork for them?
When It's Happening
Tell your loved one what you think is happening and that you are summoning help. They may be confused and tell you nothing is wrong. Get help anyway. Keep talking to them as you summon help.
Tell emergency workers be it EMTS or 911 what you think it is and that you want to get to a hospital immediately state the loved ones' behaviors, why it's different than their normal behaviors, and that it is a crisis, and insist on immediate help. Be clear calm and insistent.
Be clear in communicating. Stay calm, and don't shout or get angry.
Ask questions, and insist on being in the loop.
Advocate for the best care.
My past experiences of being an advocate for someone in a health care crisis.
I had taken care of a boyfriend
who was shot in a hunting accident where a bullet went through his kidney and spleen
bounced off his spine and logged in his heart and lost 34 pints of blood in 24
hours and I was with him in intensive care, getting off his addiction to the
pain meds, and as he was learning how to walk again, I knew how to be firm. That
boyfriend and his doctors and his family said I saved his life. But that is another
story if you would like to hear it.
After that, I was with my best friend Roy as
he died of AIDS and learned how to make sure he got compassionate care. I could tell you a lot of stories about them
leaving his food trays in the hall or trying to give him the wrong medication
and me knowing every one of his medications and the dosages.
