If you missed last week’s post with tips 1-5 click here to get caught up.
Tip #6 - Tell us your person has dementia.
I know this may seem unnecessary.
You might be thinking, but it’s in the record.
You might be right. It could be listed there.
It should be listed there.
If your person is like many of my patients, dementia may be listed along with 10 or 12+ additional diagnoses. It’s easy to miss, is what I’m getting at.
Even if it is listed there, I still want you to tell us. That verbal cue helps us remember that your person will likely need a bit of extra support or attention.
It also tells us they may not be able to choose for themselves.
Knowing they have dementia can tip us off that you, their caregiver, need to be involved.
Even if your person is making their own decisions currently, they may turn to you to help them remember what decisions were made and what the plan was after the ER.
I see a lot of joint decisions between a family caregiver and their person in the earlier stages of the disease.
Who do I want you to tell?
Everyone who comes into contact with your person.
The tech drawing blood, the nurse in triage. The nurse at the bedside.
Then the doctor, PA (physician assistant) or NP (nurse practitioner).
It may seem redundant, but we need you to tell each of us.
When you come to the ER you have to repeat yourself a lot.
This is because staff members have different roles. Oftentimes these roles don’t allow us the opportunity to speak to each other in between speaking with you.
As the doctor I need to know the person has dementia because they may not appear to.
I can’t tell you how many times I have been caught off guard.
Not too long ago I had a patient who was in the early stages. She was living independently, and came in for a fall with isolated pain in her right hip.
Her chart did not say dementia. She came alone. I remember she told me not to call her family.
Talking to her there was no concern from my standpoint about her mental status. She told me exactly how and why she fell. She had a consistent story with no apparent changes in her behavior or memory when I went back to check on her an hour or so later. She was what we call alert and oriented.
Unfortunately, she wound up in the ER for hours because of a need for a CT of her pelvis. It was busy that day so she kept getting bumped for more pressing needs of the CT scanner.
Hours later, when I went back to talk to her, her daughter was there. Now my patient was clearly sundowning. If there had not been a delay in getting the imaging, and I had sent her home earlier, I would have never known.
At this point, there was no way I could explain the results or plan to her. Her daughter and I were able to make a safe plan for her to go home and avoid the hospital.
This patient encounter was eye opening for me. It was not the first time I did not realize my patient had dementia and I’m sure it won’t be the last.
We need to know because it can change everything from a treatment or care standpoint.
We may need to provide more resources to be able to make a plan for home work.
Sometimes, because of the day of the week or time of day, the only safe plan may be a stay in the hospital.
I recommend you have a strategy for telling us that is not upsetting to you or your person.
A card you can flash or a note written on your phone you can show us. Maybe something written on a medication list you carry to show staff.
However you choose to communicate this with us, please do.
Do double check and make sure the diagnosis is documented in your person’s medical record. It needs to be there, but we also need to be reminded verbally.
Tip #7 - Ask questions.
I like to say, “what questions do you have?,” instead of “do you have any questions?”
I see it as my job to make you comfortable with the situation you and your person are in while in the ER.
Some days I do this better than others. There are a lot of pressures on us and we do not always have time for long discussions.
A good day at work for me is when I can explain the WHY behind what we are doing and the decisions that are being made.
I find when I have the time to do this there are naturally less questions because I am anticipating them and addressing them in my explanations.
I do believe that most of us providing care in the ER feel similarly and want patients and their family members to feel reassured by what we are doing and the plan going forward.
Do not be afraid to ask if you do not understand something.
In your to go kit have a pen and paper.
Think to yourself, “questions, comments, concerns.”
While you are sitting there waiting, write down your questions.
You might want to know what is happening now, what the next steps are, or what the plan is going forward.
Consider what you are concerned about as well. Your concerns can be turned into questions.
Comments you want to share with staff about your person’s care can also be posed as questions.
Ask away.
The techs and nurses are great at answering questions. When they do not know the answer, or do not feel it is best for them to answer themselves, they will find the medical professional caring for your person.
I answer a lot of questions via nurses and techs. When I can get back into the room I clarify if needed.
Sometimes relaying your question to the physician through another staff member is the fastest way to get it answered.
I am happy to answer questions because I want you to know what is going on.
When we are on the same page and your worries, concerns, and questions are addressed, you will be happier with the care you or your person receives.
It naturally improves communication.
When it is getting close to the time to leave, if that is the plan, make sure you understand the discharge instructions.
I want you to ask about the following any time you come to the ER with your person.
1- What reasons would we want your person to come back to the ER?
2- Who might they need to follow up with and how soon?
3- What care needs to happen at home now?
4- Are there any changes in medications?
Tip #8 - Be kind.
Again this may seem like common sense, but “do unto others…” is the golden rule for a reason.
It 100% goes both ways.
When we (the ER staff) get stressed, super busy, and run down we also have to remind ourselves that you all are having your worst day, week, month, or year. You don’t want to be there in the ER.
When someone gets angry or complains about an issue out of our control I often say to the staff involved, “Don’t take it personally. They are having their worst day.”
On the flipside I tell my clients to “kill the staff with kindness.” I mean it.
I can not tell you how much a simple, “Thank you for what you are doing.” or “It’s ok. I understand you are busy,” means to me.
I feel my blood pressure go down when people are nice during a stressful shift. Honestly, it makes me want to stay and chat longer or come back to their room sooner.
We are under tremendous pressure in the ERs in America.
At some point in the Facebook group I might create a video about what is happening on a national level so you can have a behind the scenes understanding of some of the issues we face.
Keep in mind we are there to provide care to the sickest person first. Sometimes we have to drop everything else in order to do so. This means patients don’t get a snack, a warm blanket, or a pillow. They may wait in the waiting room longer.
What I see people losing patience over, and being most frustrated about, I want to share with you.
One big problem is getting to the bathroom. When we drop everything to help someone critically ill, it can take longer to get to the bedside and help people with toileting.
I wish it wasn’t so, but it is a reality.
Try to anticipate the need for your person to use the bathroom ahead of time. You want to avoid the situation of a “need to go right now,” as much as possible.
Consider asking for a bedside commode or know where the bathroom is located if you can take them yourself.
Ask the nurse to have a game plan ahead of time for this situation when it arises in case they get super busy and can’t come quickly.
If your person is a man, ask for a urinal just in case. For women, especially those who aren’t walking well, you should know about external catheters.
They are suction devices which attach on the outside of the body where a woman urinates from and hook up to the wall’s suction. The person urinates and the urine is sucked into the canister on the wall via tubing.
In full transparency, these devices can be challenging for a person with dementia. They might forget they can just “let it go,” but you can see if reminding them is helpful.
A bathroom plan is a very wise idea when you are trapped in the ER.
The other irritations I see people frustrated by are not having snacks, pillows, and blankets.
I hate being cold myself and we can easily “starve” people during an ER stay.
My advice to you is to pack some of these items that will make you more comfortable in your “to go” bag. Don’t feed or allow your person to drink without asking first.
The last issue I see almost every day is people becoming upset and asking when they can leave. It is definitely ok to ask, but try not to get frustrated.
Expect your day to be stolen from you as soon as you enter the ER. The unpredictable nature of what we do makes it so we are constantly task switching.
Believe me, we will not forget about you. We likely need the room, hallway stretcher, or chair you or your person is in.
We want you to be physically comfortable and reassured mentally because it is the right thing to do for the people in our communities.
Please keep in mind sometimes our top priority is not providing comfort, it is saving a life.
Be kind to us.
Tip #9 - Ask for help.
We need to know what your limitations are. Oftentimes what you need help with is the reason why you are in the ER in the first place.
Tell us if you need help where your person is living, especially if it is your person’s goal to stay there.
Social workers are more and more present these days in the hospital and in many ERs as well.
They are invaluable in connecting families to services.
They understand Medicare, Medicaid, and private insurance companies and are experts when it comes to coverage of hospital, rehab stays, and home health services.
Ask to speak to one.
Ask for help if you are going home and think you might need a nurse to come in for wound care or wonder if your person could use physical or occupational therapy at home.
Some ERs can get home health services set up at time of discharge.
Social workers often know about resources in the community which could help you provide care.
If you are confused about your person’s medications, ask if there is an ER pharmacist who could talk with you. Not every ER staffs a pharmacist, but many do. They are an invaluable resource.
One final point, we 100% need to know if you need help because you do not feel your person can stay where they are currently living.
Let us know as soon as possible if this is why you have come to the ER.
It could change the tests that we order and what we do to evaluate your person.
Your explanation may help us get you the support you need and change the way you feel.
In some cases we may be able to look for another living situation right from the ER.
Knowing this is your goal behind the visit may also help us advocate to keep your person in the hospital if that is what is best.
If there is a need for care that you are struggling with just ask us.
Worst case, the staff in the ER will not be able to provide what you need, but maybe they will know someone who can.
Tip #10 - Know your person’s medical history.
This is a tip which requires action on your part, but is 100% worth the effort.
I believe people living with dementia deserve a plan for their medical care now, and into the future.
Allow me to be direct with you.
As someone’s medical decision maker it is your job to fill in your knowledge gaps so you can speak on their behalf.
You don’t know what you don’t know.
You may have an idea of treatments you would choose now and going forward, but only if you know all of their history, and how it could affect their future, will you be able to create a complete medical care plan.
Gathering their entire medical history, including the disease(s) causing their dementia, is the first step.
I discuss tips and tricks for how to approach and get this done in another post. Click here and pay attention to Step #4.
Next, you’ll need to learn what these conditions look like as they worsen.
This will bring to light what your person is likely to face; what they are at risk for in the future.
Then you can focus on learning how these conditions are treated. The treatment options are the choices you will have to make on your person’s behalf.
These steps are how you create a medical decision plan for your person.
If you are ready to make your person’s medical decision plan and want a physician’s guidance with what you need to know in one place, I am here to help.
The medical complications of dementia are unfortunately foreseeable and well known to those of us working in the ER and hospital.
The same can be said about common emergencies that happen as we age.
I will help you learn what you need to know about the most likely medical conditions your person will face.
Conditions like head injuries, UTIs (urinary tract infection), pneumonia, sepsis, injuries from falls, stroke, and heart disease.
You’ll learn what these conditions are, what symptoms they cause, how we diagnose them, AND most importantly, their treatment options.
You will have what you need to choose treatments that align with your person’s goals of care now and be able to adjust them in the future.
You’ll have a plan to follow so when the staff in the ER or hospital is asking you to choose you can do so with less overwhelm, guilt, and stress.
I want you to be a confident medical decision maker. I will help you become one through my “Make your Plan with Dr. Lamb” course.
To read more about the course click here.
Keep these tips in mind and hopefully your next ER visit will be better than the last.
Until next time, all my best to you and your person,
Brittany Lamb, MD
P.S. If you want my blogs, other tips, resources, and the plan for my live video trainings sent right to your email inbox click here to sign up.
excellent post, well done, should be duplicated and handed out at ER’s! One thing I would add from patient/family caregiver perspective is to try not to do unnecessary things to a dementia patient, and try to limit the number of staff in the room or who see the patient. I.e. they’ve connected with a nurse who is kind/gentle/compassionate or a doctor…let them be the one instead of a tech if there needs to be a blood draw. The less strangers, newbies the better.
Thank you very much Robin. That just made my day! I very much agree with you less is often more. The less new faces the better is good advice too. I think as more ERs become geriatric certified these things will happen. Dementia unfortunately is becoming more and more prevalent and it’s important we keep working to improve. Staff education in community ERs is something I’d like to see more of. Thanks again for your support.