It is no secret that caregivers are suffering from burnout.
I want you to know, there is nothing wrong with you.
Healthcare professionals like me are also facing burnout at alarming rates.
Personally, I don’t like the term burnout. It implies that there is something wrong with us, that we are the problem.
It used to make me feel if I just figured out and implemented a strategy, picked myself up, and kept moving I could make it go away.
I’ve come to realize I am not the problem. This issue is the system I operate inside of.
The role I play in the US healthcare system is the problem. I’m not going to go in depth with my struggles in this post. After all, this is about you.
For you, a dementia family caregiver, the healthcare system is a source of burnout to be certain.
You also face many hurdles thrown at you by the legal and financial systems.
You have cultural expectations to face. What day to day life is “supposed to look like” as we age.
There are the pressures put on you either unintentionally or purposely by your own immediate circle of family, friends, and community.
Let me repeat there is nothing wrong with you.
I think about burnout for caregivers as a type of moral injury.
It is feeling forced to do something you would never choose or wish on someone else, not feeling supported, facing the necessity of tackling one challenge after another, feeling isolated, and having to do this day in, day out, on repeat.
Morally, you suffer due to conflicting feelings because of the pressures put on you both externally and internally.
Caregivers have circling thoughts that often combat each other swirling around in their minds.
Thoughts like:
Wanting this to be over vs not wanting to lose them.
Wishing you could have your life back vs knowing they would have done the same for you.
Thinking “I can’t do this at home anymore.” vs “They never wanted to live in a facility.”
Saying to yourself, “If I have to give up one more thing with a friend or my family, I am going to lose it.” vs “If I go, someone else has to come and I’ll have to deal with the fall out afterwards.”
We could go on and on.
I want you to take a moment and scroll down to the bottom of this post.
Post your conflicting feelings in the comment section if you want to help someone else realize they are not alone in this.
You are allowed to feel this way and you should express it more.
Tell the people in your inner circle the conflicting thoughts you feel. They will understand you more if you do.
Share this with other caregivers and hear how they have dealt with these thoughts.
You are not a bad person. You are a human being. Keeping this struggle inside is contributing to burnout.
OK let’s switch gears. I want to stop talking about why caregivers are burned out.
Let’s talk about part of the solution.
I want to be clear. I am speaking to all dementia family caregivers, however those who will be making medical decisions on behalf of the PLWD will most benefit from taking action on what I am about to say.
Share this with that person or people in your family. Encourage them to listen to you. You can all advocate for your PLWD. If you are the day-to-day caregiver, they should value your opinion.
There is a way to combat caregiver burnout, perhaps even prevent it from becoming severe.
If you’ve been following along with what I’ve been putting out into the world for a while, you’ll likely guess what I have to say.
Like everything in life this is no quick fix, but if you do this you will not regret it.
Planning for what is to come is a solution to caregiver burnout.
We can positively impact your day to day life if you get this work done before you find yourself in a crisis. Before your person goes into the hospital, before they require a new living situation.
Why is planning the key to stop caregiver burnout?
Planning will naturally force you to learn.
Learning about the possibilities for the future will allow you to have more control.
Because you learned the choices available ahead of time, when they are presented to you, actually making the choice will be easier.
It will be easier because you will be making an informed decision.
Planning => Becoming informed => Having More Control => Confidence in Decisions Made = Achieving Peace of Mind
Medical decision planning is how I help families of people living with dementia.
Medical planning is just one of four pillars of planning I recommend.
All four pillars of planning intersect.
LEGAL, FINANCIAL, MEDICAL, & MINDSET.
Not everyone needs a lawyer, but an attorney can be an invaluable asset.
Attorneys can help you draft advance directives, and other legal documents such as Wills and Trusts.
It is time sensitive to handle legal matters while the person living with dementia can still make their own decisions.
You also need a plan for how you will cover the costs of long-term care for someone living with dementia.
Having a financial plan is very important. You want to protect your own future as well as the person’s you are caring for. Finances will come into the equation. Better to have a roadmap now.
Work with legal and financial professionals who have experience in helping families navigate the journey of a disease like dementia.
Ask for recommendations from people you trust.
The pillar of mindset deserves its own post. Briefly, this is recognizing YOU are essential.
The answers to you the questions you have and the solutions to your individual problems, exist. There is help out there.
Please join my email newsletter here to gain access to my some of recommendations for people helping caregivers like you solve day to day problems.
Get on Instagram or YouTube and search “dementia caregiver tips.”
I believe investing your time and money into educating yourself and creating plans around all four of these pillars is worth the investment.
Having a plan for medical decisions should be part of your strategy and is something I can help you with.
Let me give you a real-world example of how powerful planning for medical decisions can be.
I’ve had two patients recently who were similar in age and medical history. They both had moderate dementia and congestive heart failure.
They were unable to live alone, residing in memory care facilities needing help with daily activities, still walking, eating, and communicating with family.
Per their families, they were both seemingly content, engaged with others, and overall, not suffering.
One family had learned about congestive heart failure (CHF), how it is treated when someone is having worsening symptoms and what that looks like.
The other family had not.
I took care of both of these patients in the same week.
They both came in with significant symptoms. Struggling to breath, leaning forward, sweating, legs and belly swollen.
They were both breathing fast with low (but not alarming) oxygen saturations (when you have healthy lungs, your oxygen level should be in the high 90’s, 98-100%, theirs were mid 80’s).
Classic congestive heart failure (CHF) exacerbation symptoms.
One of the mainstays in treatment is supporting the lungs. People struggle to breathe due to fluid in their lungs. When this happens related to CHF, we call this pulmonary edema.
Before the invention and commonplace use of BiPAP (I’ll explain in a moment) we commonly had to intubate people who came into the ER like this.
Intubation is invasive because we stick a tube into the person’s trachea (your windpipe and major airway leading to the lungs), hook them up to a ventilator, and use that machine to control their rate of breathing and oxygen delivery, amongst other things.
BiPAP is non invasive. Nothing goes into your body. This is a mask that is Velcro strapped tightly to your face. It is like CPAP, (people use this at home for sleep apnea) but offers more support.
These two families were different because one had planned for what was to come and the other had not.
The first family’s medical decision maker for their PLWD knew about BiPAP. They allowed me to trial this treatment and give their person a low dose of morphine to see if we could buy some time and get him a bit calmer so he could tolerate the mask.
Allow me to sidetrack for a second.
BiPAP is scary for people who have never been on it before. It tightly covers your nose and mouth delivering strong pressure and seems counterintuitive when you are struggling to breathe. It is also incredibly loud.
People have to let this machine do its job. It works by using pressure to keep your small airways open so your lungs can do their job better.
After people calm down (typically about 5-10 minutes on it) and begin to feel it is helping them, they tolerate it remarkably well.
I can reason with these folks. Explain to them why we are doing this and if they just let it work, they will almost certainly feel better. I can also explain the alternative treatment is intubation.
People with dementia do not tolerate this treatment as well. They still have and feel strong emotions, but often struggle to communicate. A common reaction is to tear that thing off their face. Understandably so.
This creates another decision point where we have to make choices.
Are we going to give them medications to calm them down and get them to comply with this treatment? How much should we give? How many doses, how long? How many different classes of drugs should we try? What do we do if we cause secondary problems like low blood pressure and worsening confusion by doing so?
I’m not going to get into all the different types of medications we can use to try and get someone to tolerate BiPAP. It is not painful but is uncomfortable and anxiety provoking to people without dementia. Agitation happens even in people without dementia.
When thinking through how you would handle this situation, you must know your person’s overall goals of care. You can read more about that here.
You also need to know that BiPAP prolongs life.
Remember, before BiPAP, people in the past were commonly intubated with severe CHF exacerbations.
The next step in treatment if BiPAP does not work is intubation.
This is critical care and requires a stay in the intensive care unit (ICU). You can read more about the ICU and intubation here.
Back to our families.
The first family had invested some time ahead of this crisis and made a plan. They learned the medical issues their father was most at risk for because of his medical history and the diagnosis of dementia.
They learned how these conditions were treated and the choices that would likely be put in front of them.
Because their father had CHF, they understood it would likely get worse and may contribute to how he died.
They knew a lot of the treatments might be complicated by his dementia.
After becoming educated and clear on goals of care, the medical decision maker made a plan for how he would act if and when these things happened to his father.
He had thought through this decision already. His father would be OK with trialing BiPAP, but if he was not tolerating it and would require sedation or intubation, the plan would be to stop it.
This is what happened.
We tried a few doses of medications to calm his father down, but he was going to need continuous sedation or intubation, so we stopped BiPAP.
We gave all the other drugs we could to treat CHF through the IV, simple oxygen through his nose (nasal cannula), and admitted him to the hospital.
Ultimately, he died.
The other family did not know about BiPAP or the expectations of what happens over time when someone has a diagnosis of CHF.
Their mother did not tolerate BiPAP well either.
We used continuous sedation so that she would not fight the machine and admitted her to the hospital.
She needed BiPAP for less than a day, but became delirious due to the sedation medications, dementia, and the severity of the CHF symptoms she had.
This caused her to be given more medications to treat delirium and agitation which prolonged her stay in the hospital.
She did not die, but the insult that occurred to her body deconditioned her physically and cognitively.
Her dementia symptoms were worse, and she required a higher level of care outside of the hospital than where she was living previously.
She would need skilled nursing care indefinitely, unless she got better over time.
Recovering fully or getting close to her previous quality of life was possible.
It was also possible that something else would happen to slow things down and prevent a full recovery. Only time would tell.
She went to a rehabilitation facility to get help with her physical mobility.
While at rehab, she was confused and didn’t eat or drink well. She was overall very weak.
One day she aspirated (food went into her lungs instead of her esophagus when she swallowed) and she wound up back in the hospital in septic shock a few days later due to aspiration pneumonia.
After starting critical care, and admission to the ICU, things were not improving. Her family medical decision maker then chose comfort care and she died.
Everyone’s situation is different. There was no wrong choice made in these scenarios, however the second family medical decision maker did not plan ahead.
Because she didn’t plan, she didn’t know about the treatment options and what their risks and benefits were.
She also struggled to make decisions for her mother. She did not have a clear picture of the overall goals of care, an essential task for every medical decision maker.
When I talked to her initially about BiPAP and sedation she was not emotionally ready or prepared to make any more choices.
She had decided right then her mother would not want to be put on a ventilator and that was all she could decide at the time.
Declaring as a medical decision maker that you will be someone who plans ahead, is a leap many caregivers do not make.
I know this because I interact with caregivers making medical decisions every day.
Not planning ahead is a mistake.
Why?
It forces you to make decisions in crisis mode.
My experience in the ER has given me the skill set to be able to educate people quickly, get to their root questions and provide answers, so we can make fast decisions in the time of their crisis.
The issue is, we are not capable of taking in as much information in these times of crisis.
Naturally, less decisions will be made as a result.
Think about the last time you were delivered bad news or even potentially bad news.
Did you hear everything that was said?
If you drove or talked to someone afterwards, did you find yourself losing focus?
After that conversation, would you want to make a life-or-death decision for someone else?
Would you truly feel confident about your choice?
Most of us would say no.
We need time to process things.
Crisis decision making means snap decisions, less time for thought and careful consideration. Less time for big picture thinking.
It leads to emotionally based decisions and often regret because of second guessing.
This is a huge contributor to burnout.
Without a plan you are being set up to make decisions without the time you need to think them through.
You will feel like things just keep happening to you which will make you feel out of control.
When people second guess themselves they think back to every little thing they could have done differently.
With a plan, you will realize in the moment when making decisions, that yes, what is happening was truly foreseeable.
You didn’t do anything wrong as a caregiver.
This medical issue was something you learned about, expected could happen, and became prepared for.
No matter the cause of dementia (LBD, Alzheimer’s, vascular, FTD, PD etc.) the same things happen to people medically.
They are not a surprise.
You can learn what they are. You are 100% capable of this.
Instead of making a snap decision, you can have a plan to follow. You will not be caught off guard by what the medical team is telling you because you have heard of the issue before.
The treatment options will not be completely foreign concepts to you.
You create this plan by way of learning on behalf of your person. You learn because they can not.
Naturally you will also apply what you learn for other friends, family, and for yourself.
We are all aging and will need to think through these decisions for ourselves too.
Medical decision planning is what I help dementia family caregivers accomplish.
I created an online program, “Make Your Plan with Dr. Lamb” for caregivers to teach them the most common medical decisions they face.
I teach the four pillars of planning, but go in depth into medical decision planning and how this relates to your mindset.
Medical planning is possible and you are capable of learning what you need to know to make confident decisions.
You create a medical decision plan once.
After that you review it and update it when things change, and you will be set for the rest of your person’s life.
Teaching caregivers how to do this is what I am doing to prevent and combat caregiver burnout.
It does not matter how you plan caregivers, but when you decide to commit, take action, educating yourself and creating a plan for your person, you will not regret it.
Check out what I created for you, send me any questions.
When you are ready to get started, I’ll be here.
Until next time, all my best to you,
Brittany Lamb, MD
I am having conflicting thoughts often almost daily. I hope it ends soon vs I don’t want to lose him, I can’t do this vs he would do this for me, I don’t want that treatment for him vs it could give him more time, I want a couple hours (3) a week for myself vs he throws a fit and is so angry when I get back that it’s not worth it.
Thank you for being vulnerable and sharing here Yvonne. Yes, many conflicting thoughts. So common and so normal. What sticks out to me though is you 100% need to take time for yourself though. That is one thing you should prioritize. You’ll have to do some work trial and error testing strategies to handle and manage his behavior when you return. You are worth the work around to find a way to have time for yourself. Consider posting about your situation with his behavior in one of the dementia support groups on Facebook or an in person support group in your area (many are virtual). Also consider following Natali Edmonds with Dementia with Grace. She offers excellent caregiver support with practical advice for troubleshooting and actions to take when dealing with dementia related behaviors. Every problem has a solution. My Facebook group can help you with the conflicting thoughts around medical decision making. Post in there for more detailed help. Thanks again for sharing!!