If this is your situation, please know you are not alone. You are amongst many other caregivers.
By the time people are diagnosed with the disease that is causing their dementia they often are unable to declare their wishes.
Even when the disease is recognized and diagnosed, people can be hesitant to seek out the help of others to discuss their wishes.
It is natural and unfortunately very common to avoid planning for the future when it comes to medical care. I can understand why.
None of us really wants to think about what will happen when we get sick and can not speak for ourselves, but this is a reality of life.
Most people, especially as they age, will get to a point where they have at least one instance when they become so sick they are unable to speak and advocate for themselves, let alone make their own decisions.
For people living with dementia the loss of this ability comes sooner and often before their health otherwise fails.
If your person did not document their preferences, and is no longer able to make their own decisions, you are not “off the hook.”
There are a few steps you will need to take.
Your first order of business should be determining who is the person that will speak for them.
It is less common that people fill out health care directives specifically telling their family how they want to be taken care of as their dementia progresses.
What is more common is at some point the person declared who they wanted to speak for them if they were unable to.
Go and search their records. Look for paperwork declaring who the person may have chosen as their health care surrogate, medical power of attorney, health care agent, or health care proxy.
If they have worked with an attorney in the past for any legal matters, ask that person if there is anything on file.
Also ask their doctor. If they were hospitalized at some point people often have this type of form on file. It is not the same as an emergency contact.
We are looking for a legal document declaring their preference for the person they want to make their medical decisions.
This person needs to be identified because they have an incredibly important job.
What if you’ve already done this investigative work? What if you can not find any record of your person designating someone else as their medical decision maker.
Now you need to understand what happens in your state.
Someone will be the “default decision maker.”
Who is the default decision maker?
You may have heard of this as “next of kin.”
State law determines who is given the legal right to make medical decisions for you if you do not declare your preference in a legal document.
Because this is regulated by each state, you should look up the rules in your state to have clarity on this.
For most people living with dementia, it is typically the spouse first, next any adult children, then a sibling.
If a guardian or conservator has been appointed legally that person will be the decision maker.
You can look up “who makes my medical decisions” in your state to start the search for who has the legal right to make medical decisions.
As in many areas in life, there are laws and then there are the practical applications and what happens in the “real world.”
While legally the default decision maker will be the person we want to reach when making care choices in the ER or the hospital, we often speak with the person or people who know what has been going on.
To be clear, we do not reach out to people for history or help making medical decisions when the patient can do this (or appears to be able to) on their own.
We reach out when the person (in this case, the person with dementia) can not speak for themselves, make their own decisions, or we obviously can not rely on what they are telling us.
In these cases, when we are speaking to someone other than the patient, we are attempting to gather history and determine who has been making decisions for the person.
There is almost always someone.
When we “break” from the decision maker who has the legal right to make care decisions, it is often a situation with the spouse.
It is common that the spouse is not able to make decisions because of their own cognitive or overall health limitations. They often rely on their adult children or other family members to help them.
Sometimes the spouse is not willing to make care decisions and tells me to talk to another person, redirecting me to the person they want to be responsible instead.
This may not be the oldest child.
It could be the person with dementia’s niece or nephew, the middle or youngest child, their brother or sister.
In an ideal world, when the person with dementia did not declare a decision maker legally, the people who care for them would come together to support the person who is the default decision maker.
If that person is unable to do the job the next person in line would be supported.
Alternatively, which is not the “legal way”, the family would decide together who it is going to be and decide to support that person and their decisions.
Practically speaking, if the people involved in the person’s care decisions are in agreement, the legality of the situation when it comes to who is making the decisions is often not even brought up.
It is when there is family conflict and disagreement in the plan of care that legal documents are needed and missed the most.
The times this is most stressful for decision makers are when family members do not agree with each other.
In my role as an ER physician, I am then extra careful to ensure the decision maker has the legal right to make decisions for their person.
If there is disagreement, there could be future legal implications between the family members and potentially myself if we do not do things “by the book.”
We all know families are complicated.
There is no way I could cover every situation about who the default decision maker would be or the various combinations of decision makers and family logistics I have seen. Remember you should check your state rules.
Regardless of who the person is that is making decisions, ultimately, decisions will need to be made.
Regardless of feelings, someone will have to speak on the person’s behalf. One person, or the family together, the call will have to be made.
Going forward, I am going to assume that person is you, because you are here reading this.
I assume that you are the decision maker either legally or by default, and your person left you no guidance of their care preferences in writing.
I will refer to your job and title now as “decision maker.”
The major mistake you need to avoid as a decision maker is saying, “I don’t know what they want, we never talked about it.”
My mother’s father, who died when I was an infant, left behind a phrase that was a theme in my childhood. “Life is not fair.”
It is simple and true and it applies to your situation. With no paperwork to guide you, you have work to do.
The way you view your upcoming tasks is completely up to you.
It is certainly not fair that you have been left in this position, but you have.
You now have a choice to make. It is a fork in the road.
You can either wait until something happens to make choices or you can choose to become an informed decision maker anticipating and planning ahead of a crisis.
If you choose the former, you can go ahead, stop reading, and go do something else.
I’d be willing to bet that if you continue reading this layout of what you should do next, you’ll think to yourself, “I can do that.”
It is in your best interest to have thought about how you will act as things happen.
For your own peace of mind, you need to have a plan. If you are not someone well versed in healthcare and the ins and outs of the logistical issues people living with dementia face, you will find yourself in over your head at some point.
You will be asked to make many choices. If you do not have the knowledge, you need ahead of time you are likely not going to fully understand the options when they are presented to you.
This is true for anything in life.
We all have points in our lives where we wish we knew more ahead of time after we achieve hindsight.
This is true when making financial, daily care, housing, and medical decisions for someone living with dementia as well.
The more prepared you are ahead of time the more informed you will be in making choices. You will ask better questions to clarify and will sleep better at night knowing you did all you could with the situation you were handed.
There is a key first step needed when it has been decided that you will make decisions for someone.
This is determining overall goals of care. I am a physician so when I talk about this I often am referring to medical care goals, but the goals should be much broader first.
What does your person want for the rest of their life? Do they want to be kept safe? Do they want to be able to maintain their independence for as long as possible? Do they want to spend as much time with others as they can, friends, family or any group of people?
Your person can still feel. This matters.
Their quality of life likely matters to them.
Start out in your role as their decision maker by determining how much they value quality of life and what it actually means to them. Try to define this for them.
What are the things that bring them joy, happiness, security? What makes them who they are?
Think about your person and whether you think they would value the length of their life or the quality of their life more?
This answer will help you make all of their care decisions, especially medical decisions.
Quality of life and the understanding of what this means for each individual living with dementia, is the underlying keystone for determining overall goals of care.
That was enough for this week. Go and think on these things.
If you are the decision maker, make sure you have the legal right to do so in your state. If you do not, reach out to the person who is. Are they going to agree with your decisions?
Reach out to anyone who might get involved in decision making. See what you can do to get on the same page with them.
Next, start thinking about your person’s goals and what quality of life means to them. Write down the answers to the questions I gave you. Talk to the people closest to your person to help you answer them.
Stay tuned for a continuation of this post where I will outline next steps for you to take.
I’ll send you an email to remind you when it goes live.
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Until next time, all my best to you,
Brittany Lamb, MD
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