Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️
You can read about why I started Carer Mentor: Empathy and Inspiration here. I recommend using the quick-start navigation guide to explore the website.
What You Need to Know Before an Unexpected Hospital Trip
Have you called for paramedics before? What happened the first time you dialled for emergency services when there was a crisis concerning the person you care for? What did you grab? Did you go in the ambulance? How long were you in the emergency department/accident and emergency department?
Before my father died in January 2020, I lost count of the number of times I dialled 999 for an ambulance in the middle of the night for him. He experienced several atrial fibrillation episodes, cardiac events, and a couple of bad falls. Congestive heart failure, rheumatoid arthritis, cancer, along with vascular dementia, and organ issues. All these health issues meant we were walking on eggshells; hypervigilance was our norm.
If you’ve cared for someone with congestive heart failure and compounding health issues, you’ll know how tricky things can be. We had to figure out what to do with what circumstances, what worked for Dad, and how to recognise when things were escalating.
This untrained, non-medical carer took the lead in emergencies time and again through trial and error. An emergency doesn’t start when you pick up the phone; it starts when you sense, very literally, that something is wrong. Do you, don’t you call for paramedics? A loud crash and thump is a faster 0 to 100% adrenaline and call compared to trying to decipher a nuanced change when they’re already very weak.
The hardest, most heartbreaking moments were having to argue with Dad about calling for the paramedics. He didn’t want to go to the hospital, and we didn’t want him admitted to that hospital either, but some events require hospital intervention.1
I’m sure there are people curiously wondering, ‘Why can’t you just pick up the phone and get the ambulance?’ The shortest answer is that nothing is that simple, cut and dry, explicit or easy to decipher. Will the symptoms subside and calm after…how many minutes, a few, an hour? When do you counter someone’s wishes? Having vascular dementia doesn’t automatically switch off their mental capacity, nor would I want it to! So, here in the UK, as attorneys of Dad’s Health and Welfare, we always acted per his wishes (the Lasting Powers of Attorney (LPA) for Health and Welfare). So, how do you decide whether to call the paramedics at 1 am, when someone can still express their wishes and has mental capacity? I can only recommend starting to discuss ‘wishes’ now, getting the paperwork done, and seeking advice from a doctor/expert. There is no cookie-cutter answer. Sorry! For example:
UK - When to call 999 and what happens in the call.
Canada - Heart and Stroke Foundation of Canada When to call 911 Emergency signs
Two weeks after Dad passed, we pivoted to my mother’s cancer surgeries, one after another, and then chemo, and then radiotherapy. So, I’m a seasoned ambulance passenger, a primed ER-cubicle camper; a carer based in the UK.
The shortest wait time in the emergency department was 6-8 hours with a subsequent discharge home. The longest was from 3 am to my Dad’s admission to a ward around 4 pm. And that was only the start of that hospitalisation journey.
Contrary to popular belief, a carer’s work doesn’t end at the door of a hospital. When the comfortable care routine is lost to a crisis, we suddenly have to dial UP our roles as the shield, the buffer, the translator, and the advocate for our loved one, their needs, their rights, AND our own!
The Checklists for Hospital Go-Bags, Admission and Medical Information Summaries
I want you to have these, so you’re primed for an emergency. These are NOT random lists of items. They’re curated checklists I use to pack and repack what we need in these crises. Each item and action has a story.
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Dad was palliative but not labelled with ‘end-of-life’, meaning all medical treatment was aimed at making him comfortable and stable. Aligning on which actions will be taken in specific circumstances, with your doctor's support, can relieve a lot of the angst and stress. For the majority of paramedic calls, Dad had to be admitted to the hospital (2015 - 2019). However, in the second half of 2019, we discussed how and when paramedics might stabilise his heart, then check with the on-call doctor, and support our collective decision for Dad to remain at home. Ask the questions and walk through the ‘what happens when’ step-by-step actions so you can communicate effectively with the paramedics/doctors and advocate for your loved one’s wishes, under pressure.
Such good advice, Victoria, and your useful checklists! I was interested in your ‘ decision to seek help’ thought processes. I have had many pre-emergency admission scenarios with Den. As a doctor I often use something called the NEWS score to help me decide if he needs an ambulance. But for that you need a blood pressure machine, an O2 sats probe, thermometer. I always reflected after about what carers without the equipment or confidence/training would do.
Then I realised that whenever I have used the NEWS score on Den, it has only ever confirmed what my gut was telling me anyway. So my conclusion is that all of us, as carers, should trust our gut, knowing that we know our loved ones best.
When are we not caregiving?? This is awesome Victoria. Thank you for creating such a valuable checklist resource. Need one for what to do when you get into a car accident too!!