Have you ever been concerned about an older relative who seems to be making bad decisions?
Perhaps your elderly father insists he has no difficulties driving, even though he’s gotten into some fender benders and you find yourself a bit uncomfortable when you ride in the car with him.
Or you’ve worried about your aging aunt giving an alarming amount of money to people who call her on the phone.
Or maybe it’s your older spouse, who has started refusing to take his medication, claiming that it’s poisoned because the neighbor is out to get him.
These situations are certainly concerning, and they often prompt families to ask me if they should be worried about an older adult becoming “incompetent.”
In response, I usually answer that we need to do at least two things:
- We should assess whether the person has “capacity” to make the decision in question.
- If there are signs concerning for memory or thinking problems, we should evaluate to determine what might be causing them.
If you’ve been concerned about an older person’s mental wellbeing or ability to make decisions, understanding what clinicians — and lawyers — mean by capacity is hugely important.
In fact, the American Bar Association’s Ten Legal Tips for Caregivers lists “Understand Decisional Capacity” as tip #1. But so far, I’ve found very little information available online, to help older adults and families understand this important issue.
So in this article, I’ll answer some of the frequently asked questions that come up around this topic:
- What does the term “capacity” mean when it comes to decision-making?
- What is the difference between incapacity and incompetence?
- How is capacity determined?
- Does capacity have to be determined by legal professionals? Is it a “legal decision” whether someone has capacity?
- Do I have to have a legal or clinical determination of incapacity for a specific decision before I override the decision of an older person with dementia?
- Do I need a legal or clinical determination of incapacity before I take the car keys away from an older parent who has dementia and is an unsafe driver?
- Is neuropsychological testing required to assess capacity?
I’ll also share a list of additional resources and references at the end.
What does the term “capacity” mean when it comes to decision-making?
Let’s say you tell me that your 87-year old aunt Mary has been falling repeatedly, but she refuses to go see a doctor.
In this case, we might consider whether she has the capacity to decide whether or not she needs to see the doctor. It’s especially vital to do this if Mary has been showing signs of memory or thinking problems, or if she’s been diagnosed with a dementia such as Alzheimer’s.
When we ask whether a person has the capacity to make a given decision, we are asking whether the person can show us that he or she has the mental abilities necessary to make the decision.
Generally, capacity requires that individuals be able to understand:
- The situation they are in,
- The decision in question,
- The consequences of making a given choice.
The person should also be able to explain his or her reasoning, and express the choice to others. And the reasoning should not rely on anything that strikes most people as bizarre or delusional.
Different types of decisions require different types of mental abilities. Experts consider that these six civil capacities are of particular importance for older adults:
- Medical consent capacity
- Financial capacity
- Testamentary capacity
- Sexual consent capacity
- Capacity to drive
- Capacity to live independently
Legal standards for capacity are determined by state law. The specific requirements can vary, depending on the state and the type of capacity in question.
People sometimes assume that decisional capacity is an “all-or-nothing” type of ability: either you have it, or you don’t. This is sometimes framed as whether a person is “competent” or “incompetent” to manage affairs. (See below for more on capacity and competence.)
But the reality is more complex. Here are two essential points everyone should understand.
1.Capacity is decision-specific.
This means a person’s capacity should be evaluated in light of a specific decision to be made.
Why does this matter? Well, some decisions are complex and require a person to consider and weigh multiple pieces of information. For instance, the decision to sell one’s home, which may involve consideration of tax and estate consequences, is often quite complex.
In comparison, some decisions may be relatively straightforward. For this reason, it is possible for a person to lack capacity to make certain types of decisions while retaining the capacity to make simpler decisions.
2. Capacity can fluctuate, depending on a person’s health circumstances.
For instance, most people immediately after surgery are drowsy. In this state, most will lack the capacity to address anything more than a very simple decision. But, their decisional capacity should improve as the person mentally recovers from the surgery.
It is also common for people with vulnerable brains, such as people with a diagnosis of Alzheimer’s or another dementia, to experience fluctuations in capacity. When they are feeling well and are at their best, their mental abilities might be good enough for them to have capacity for many decisions. But if they are sick, or stressed, or otherwise not thinking at their best, their capacity to make decisions can be reduced, sometimes drastically so.
For these reasons, before concluding that a person lacks capacity for a given decision or task, every effort should be made to improve capacity if at all possible. Such improvements may be possible by treating an underlying health problem, or by mitigating any hearing or vision problems.
What is the difference between incapacity and incompetence?
Capacity is often considered from a clinical perspective (i.e. by doctors, psychologists, and others) versus a legal perspective (i.e. by lawyers, judges, and courts).
Historically, the term “competence” was used in legal settings and the term “capacity” was used in clinical settings. The legal determination of competence was often informed by a clinical assessment of capacity.
Hence many clinicians will still say that they cannot assess someone’s “competence;” they can only assess their capacity as regards a given decision or life function.
However, states have recently been moving away from global legal determinations that a person is “incompetent,” — which often meant the loss of virtually all control over one’s affairs — and are increasingly favoring determinations of incapacity for certain types of decisions or life functions.
Hence the old convention of using “competence” for the legal arena and “capacity” for the clinical one no longer works well.
Instead, it is more accurate to refer to “legal capacity” versus “clinical capacity.” These two concepts are distinct – albeit related — as explained further below.
How is capacity determined?
In most situations, we presume that adults have capacity. If concerns about capacity are raised by others, or if a professional notices anything to cause concern about capacity, then a process of further assessing capacity may be started.
Legal professionals are generally required (by state laws and by their professional code of conduct) to conduct a preliminary assessment of a person’s capacity to complete a given legal task. They may be required to take action if they believe a person may not have capacity for the issue at hand.
However, legal professionals are not trained to clinically assess capacity. Such assessments must be done by professionals with some type of healthcare — often psychology — background.
Clinical capacity assessments vary depending on the type of clinician involved and the capacity issues in questions. Generally, they include a more detailed evaluation of the person’s capabilities, and should also include the likely medical causes for any reduction in capacity.
A clinician’s evaluation of capacity will result in a clinical opinion regarding the capacity in question. Clinicians sometimes may state that a person appears to have marginal or borderline capacity for the decision in question.
This clinical opinion can then be used by legal professionals to help them complete their legal determination of capacity.
Does capacity have to be determined by legal professionals? Is it a “legal decision” whether someone has capacity?
Yes, in principle capacity is a legal determination and should be made by legal professionals.
However, in most states, physicians and other clinicians are allowed to determine capacity for medical decisions, especially for the purposes of enabling a surrogate healthcare decision-maker to act.
In the real world, many people take action without fully understanding the laws and procedures related to capacity, or without consulting a competent lawyer. Such actions often proceed unless another person brings suit to contest the actions.
For instance, it’s fairly common for family members and others to take action based on a physician or other clinician opining that an individual has become “incapacitated” or “incompetent.” But such actions may be on shaky legal or ethical ground, especially if actions of major consequence (e.g. sale of property) take place. So if a family suspects loss of capacity, it’s best to seek legal assistance before proceeding.
Do I have to have a legal or clinical determination of incapacity for a specific decision, before I override the decision of an older person with dementia?
Yes, you should seek a clinical assessment of capacity if you are concerned about a dementia such as Alzheimer’s disease. This is especially important if you believe it has progressed to the point that a person has lost the capacity to make certain decisions.
If you feel you need to override the person’s decisions, for instance to protect the person’s physical safety or financial wellbeing, you may need a legal determination of incapacity.
If the person with dementia has completed a durable general power of attorney, the agent should be able to act on their behalf. To override decisions made by the person with dementia, the agent will often need to provide proof that the person has lost the capacity to make certain types of decisions. Many power of attorney documents specify the criteria for deeming the principal incapacitated, although some are pretty vague about this.
If the person who has dementia has not completed a durable general power of attorney, then you will probably need to consult with a lawyer, to determine whether the person still has the capacity to designate a power of attorney. If the person is lacking this capacity, then you may need to pursue guardianship in court, in order to override the person’s decisions.
Even if you have secured a legal determination of incapacity for certain decisions, it’s vital to act in accordance with ethical best practices that respect the person’s autonomy and dignity to the greatest extent possible.
This two-page document from the Alzheimer’s Association provides a good summary: Ethical Issues in Alzheimer’s Disease: Respect for Autonomy.
Do I need a legal or clinical determination of incapacity before I take the car keys away from an older parent who has dementia and is an unsafe driver?
If you are concerned about dementia and driving, you should make every effort to obtain a clinical assessment of capacity to drive safely. A legal determination of incapacity to drive will also help ensure you are on sound legal and ethical footing.
It’s also essential to learn more about your state’s options and requirements when it comes to reporting potentially unsafe drivers. For instance, some states require clinicians to report moderate or severe dementia to the DMV.
However, many families find that the older person in question is refusing to see a doctor or attorney. In this case, you can still call the doctor and report your concerns. Privacy laws such as HIPAA do not require families to get permission to reveal details to the doctor; they only require health professionals to have permission — or other good reasons — to disclose a patient’s information to others. If the doctor has a good relationship with the older person, they may be able to persuade them to come in for a visit.
Or, you can try calling Adult Protective Services; they don’t take a person’s car keys away but they can sometimes encourage or even insist on further evaluation. You can also try to enlist others in the older person’s social circle, to see if it’s possible to persuade the person to give up the keys.
As a last resort, if you have evidence that driving poses a substantial risk of harm to the older person and to other motorists and pedestrians, it’s reasonable to conclude that this outweighs the harm of taking a person’s keys before legal incapacity is confirmed. Such evidence might be past crashes or near-misses, combined with other evidence that the person has reached a state of moderate or worse dementia, such as frequently getting lost or appearing confused.
Of note, the Alzheimer’s Association’s position statement on driving and dementia states:
“Driving privileges must be withheld when the individual poses a serious risk to self or others. Interventions to prevent driving in individuals who lack insight include physician oral or written recommendations, taking the keys, removing the car, changing the locks, filing down the ignition key, and revoking the license.”
Is neuropsychological testing required to assess capacity?
Not necessarily. Clinicians are usually allowed to use “clinical judgment” in conducting their evaluations and reaching their conclusions.
Especially if a person has a dementia that is at a moderate or severe stage, it is often possible for a generalist physician to provide evidence of a lack of capacity, simply by interviewing the person, documenting responses that demonstrate a lack of needed understanding or reasoning, documenting evidence from family members and other observers, and providing evidence that the medical cause of the thinking problems is not likely to improve.
However, if a person’s cognitive impairments are mild, subtle, or focused in certain cognitive domains, then neuropsychological testing is often very useful. Neuropsychological testing can also be used if a preliminary clinical evaluation by a physician yields borderline or uncertain results.
Resources & References to Help You Understand Capacity
Written for the lay public:
- Respect for Autonomy (Alzheimer’s Association)
- Legal Planning (Alzheimer’s Association)
- Assisting a Person with Dementia in Planning for the Future (Alzheimer’s Association)
- Driving and Dementia (Alzheimer’s Association)
Written for professionals:
- Assessment of Capacity in Older Adults (American Bar Association/American Psychological Association)
- Includes links to free comprehensive guides for clinicians, lawyers, and judges
- Assessment of Capacity in an Aging Society (PubMedCentral)
- Clinical and Ethical Aspects of Financial Capacity in Dementia: A Commentary (PubMedCentral)
Do you still have questions about decision-making capacity?
If so, please post them below, and we’ll try to get them answered for you.
Note: I am not an attorney or a psychologist. This article is based on my review of the above resources, plus my own clinical experiences and conversations with attorneys and other experts. If you are an expert in these issues and can help me improve this article, please contact me.
I am 80 and have just e-mailed “Incompetence & Losing Capacity: Answers to 7 FAQs” to my four adult children. Now all they have to do is consult your article when they worry that I might be too old to drive or live alone! (I am keeping it for myself, too.)
All your pieces are terrific. Thank you for your decision to create this blog.
I’m so glad you find this useful! thank you for this comment.
What to do if an emergency has occurred and patient has brain absesses and needs approval of next of kin. This was the case with myself,sister to 69 year old male who never recovers capacity. After my approval of operation,very serious,without Durable Power of attorney,advance directive,or any document other than that I am the only heir. Palliative care was initiated after patient never regained consciousness
after initial operation.
I adore reading your blog! And what a meaty subject you’re bitten off here. Very helpfully done!
thank you!
In February I bought a trailer from an 81 year old man who wanted to sell and move he knew what he wanted and knew what he was doing and I’m 63 years old and homeless so it was helping ubotb of us get what we wanted to do. Now 3 months later after my friend borrowed the money to pay the back taxes and we bought a bond because we couldn’t find his son who was on title as survivorship in case his dad died . But now his son who I never met of hasn’t come around his dad in over 3 years wants to claim his dad incompetent because he doesn’t like his decisions. What do I do now ?
?
Sorry to hear of your situation, that does sound tricky. If you think this older man did know what he was doing when he sold his trailer to you, then I would recommend trying to gather up any evidence you have supporting this. This might include emails, text messages, and also statements from other people who knew him or perhaps heard him discussing these plans.
I am not an attorney, but I think if the transaction has been completed and his son wants to contest it, his son will need to hire an attorney and file some kind of claim in court. His son telling you he thinks his father didn’t have capacity to sell the trailer does not, in of itself, invalidate the transaction, as far as I know.
You may also want to try to find out what are the laws in your state, regarding these kinds of transactions and what can be done when family (or others) believe an older person engaged in a transaction that they didn’t actually understand or have capacity to agree to. If you are low in income, I recommend contacting your Area Agency on Aging (search at eldercare.gov for your local office) to ask about low cost legal aid services, to help you look into this. Good luck!
My 78-year-old mother has ever-increasing anxiety that is leading her to make irrational decisions. For example, when a car insurance payment missed a deadline because of late mailing and a notice was received that her insurance had been canceled, rather than following through with the insurance company, she immediately ran out and signed up with a local insurance broker that charged her enormous (but still legal) fees. The first insurance company reinstated her original policy within 24 hours and she canceled the new policy but was out hundreds of dollars due to an anxious irrational panic response. This is not the only example. She has 3 adult children in their 50s who are willing to help with anything but she refuses to tell us what’s going on until things go very wrong (above example) and it’s too late for any of us to step in. She’s not incompetent or obviously incapacitated but her anxiety leading to irrational decisions is alarming, expensive, and I fear that she is vulnerable to being taken advantage of by unscrupulous individuals. She lives alone 3+ hours away from her nearest relative and has an active social life, but her friends are older than she is and have there own issues. What can we do? Wait until something really bad happens?
This is a tough situation, albeit not uncommon.
Increasing anxiety and impulsive and/or worrisome financial actions are often red flags. The ideal would be for her to see a clinician and have her memory and thinking evaluated. Although you don’t feel she’s obviously incapacitated, it’s possible that a good evaluation would reveal objective signs of impairment. A good evaluation will also help your mom and your family identify any underlying causes or factors that might be worsening her anxiety and/or her financial management abilities.
This article explains what a good evaluation should include: How We Diagnose Dementia.
(Note that being evaluated for possible dementia does not mean your mom HAS dementia; this article is really about how we evaluate cognitive concerns.)
The problem is that when families notice an older person becoming more anxious and/or erratic, bringing up the possibility of a cognitive evaluation often makes the older person even MORE anxious. Many even will refuse to get evaluated.
There is no easy answer in this case. Good empathic communication is key, and I offer some ideas in the article 4 Things to Do When an Older Person Resists Help.
Otherwise, families basically have to figure out what works in their situation. Sometimes it helps to bring up the concerns to the doctor; sometimes the doctor is able to persuade the person to come in. It can also help to work with a geriatric care manager or other person with expertise negotiating these types of situations.
Also, even if an evaluation of your mother finds that she’s cognitively “normal” for her age, research shows that even normal cognitive aging often causes a decline in financial abilities. Older adults are often reluctant to involve their children in their finances, but it’s probably a good idea for them to do so, as this can protect them from scams and avoidable financial expenses. It also puts a family in a better position to take over, in the event of a sudden illness or other medical emergency. More on this issue is here:
5 Things to Know about Aging & Financial Decline
From what you describe, your mother has already been refusing your help. But that doesn’t mean that she couldn’t be persuaded, if you found more constructive ways to bring up your concerns and address her own concerns.
Can you figure this out on your own, at a distance? Possibly, but in practice, most families benefit from having an expert mediate these kinds of conversations with older parents. So if you can, I would suggest you see if you can get someone to help you with these difficult conversations. It often costs money, but it can be a worthwhile investment, especially if it puts you in a position to prevent additional financial losses, or if it helps your mother get a diagnosis that she needs.
Good luck and keep persisting.
Thank you for your helpful response, much appreciated!
The problem that we have run into is that one doctor will say one thing and the other will say another. With dementia, they can have a good day where they seem almost normal and then the next day they can’t even remember what year it is and that their siblings have all passed away. I thought one parent did horrible on a memory test that the doctor gave, but noticed that the doctor wrote that they were fully competent!
I have had to make some hard decisions ,but most people who know parents said that I did exactly the right thing. This article helps – and it backs up the decisions that I had to make.
Thanks for this comment. Yes, I have seen families run into this problem and I think it’s not uncommon. I think this happens for a few reasons:
– Many doctors have not had even rudimentary training in evaluating capacity. I recall being taught a little about determining whether a patient had capacity to consent to medical treatment or make a medical decision, but nothing about all these other capacity issues.
– Most doctors have not been instructed on how to write a capacity assessment. They are probably writing them based on others that they have seen, which are often very cursory.
For instance, if a family or other interested party asks the doctor to write about capacity or competence, the doctor really should ask “to do what?” But many of them do not do this.
You sound like you have found your way through this, but for others, here are some suggestions on what to do:
– If a parent seems to do poorly on a memory test – or if you report a lot of concerns — but the doctor says he/she is “competent,” ask the doctor to clarify their reasoning. They should be able to do this verbally with you, and also in writing. Bring up any additional information you have regarding the person’s insight and judgment.
– If a doctor provides you with a capacity assessment that seems incomplete or incorrect, consider getting a second opinion.
Thank you for helping us navigate very unfamiliar waters. My dad has Parkinson’s disease and some congnitive/dementia issues. My parents and my sister and I have legally all made end of life, financial and medical decisions together as a family serveral years before Dad was in this state. It is very difficult to get others to understand DNR or what we like to say, let natural death occur. He is under palliative care now. Yet even those assisting in the caregiving, nurses, doctors, Chaplin’s, still push for further measures than has been established. They ask Dad questions about things he decided years ago -legally – and try to get him to change his mind. At this point is not have the capacity to understand implications of decisions. How do we get these professionals to back off and honor what was decided by my dad when he was able to clearly decide what he wanted?
This is too bad, although not surprising to me. People are usually well-intentioned, but they may not understand what your family has already decided, or the details of your dad’s mental capacities, or even how to pursue a comfort-focused medical approach when a person is not yet on hospice.
Generally what you will have to do is be persistent and proactive about communicating with them. It’s good to talk to people in person, in part because that’s when it’s easiest to learn more about how they see the situation.
If you understand this, you can often be more effective in correcting their misunderstandings. But after conversations, I would recommend summarizing the key points to them in writing, e.g. “We discussed the fact that my father previously indicated XXX, that he said he wanted to leave all decision-making to his children once he was impaired, and that this is legally documented, and we agreed that hence the caregivers will no longer bring up XXX with him, as this is distressing/confusing to him.” And then follow-up and insist if things are still not going according to your father and family’s requests.
Another approach you can try is to recruit someone else to back you up, such as your father’s doctor or anyone else whose say-so is likely to carry weight with the providers that you are having trouble with.
Also consider expressing your concerns in writing to the leadership of the involved agency or facility, if there is one.
It is not fair, but family caregivers generally have to spend a lot of time double-checking things and finding ways to get others to do what they should be doing.
Good luck!
Because of the current mess I’m dealing with regarding my parents, I would like to plan ahead and make things as simple as possible in the future for my children should I get to a point where they don’t feel I have the capacity to make sensible and safe decisions for myself.
My son is the successor trustee of my trust, and I’m thinking I should do a springing DPOA so that he can remove me as trustee in the future should I become incapacitated. I don’t want my children to have to rely on medical providers to make the capacity determination.
Is there a document, or can I incorporate it in the DPOA, where I can appoint my daughter as my agent with the authority to make that determination if and when necessary? I constantly see where it’s stated that determination SHOULD be made by medical providers, but I can’t find whether that is a legal requirement.
Any thoughts?
Thank you.
Thanks for raising this interesting question.
I don’t have much experience with trusts, but my understanding is that when a trust is created, the documents usually specify the conditions under which a trustee can be considered incapacitated. So I am not sure if you can achieve your goals with just a DPOA form, you may well need to go have your trust documents amended.
In terms of who determines your incapacity and what’s legally required: I believe the rules are usually set by state law. So an attorney in your state would be able to advise you as to what is legally required.
Now is it a good idea to let your family decide if you’re incapacitated without input from medical professionals? Honestly, I am not sure. So far I have identified many common problems that families run into, but identifying a solution that works for most is trickier.
I really think you will have to consult with an attorney to sort this out. An elderlaw attorney may have more relevant experience than one who does trusts and estates. Good luck!
I have a ? Could a POA of finances cuz..trust isn’t in acted fully till his death…(poa estate), whose my brother in-law & my sister who is one of people named in trust, I’m the other & POA HC & BSN( not active) go to ATT trustee n get a24 hr competency/ a doctor (they said he wanted to be moved 2 different place with cheaper assisted living & it states in will he’s to have his wishes meant)…not only move with out my knowledge but could they also have new trust drawn up eliminating me without My knowledge in I’m then reinstated as POAHC?
I ask because I live in town now 2 hours away…& had been caring for my terminally ill brother who moved in with me. so focus was off of our step father even though I had been running out there before he was moved. I didn’t like what they did & told director so…now he is having hospice come in & my sister quit her job & our step dad said he’d pay for her insurance so she could come & help car for him @ assisted living home! I’m POA but now I’m not even being told what’s going on. I need advice ASAP & don’t have any funds to use towards lawyer if need be. I will however get his full med chart ASAP & see what reason they gave doctor for move.His former place of living I may investigate & the D.O.N. there as well! I pray I am just paranoid & was going to just leave it be praying for God to lead me in right direction. so…better to be prepared just in case I need to seek legal action.
Sincerely,
Rhondalee
P.S.
I’m concerned do to this is so far removed from his wishes & the step dad I know would never of done nor been manipulated & he doesn’t have his logical aspect of his thoughts processes for sometime now since & just before competency hearing 1st took place.
Sorry to hear of your situation, it does sound complicated and also frustrating for you.
Power of attorney documents all expire when a person dies, so something fully enacted as death sounds more like successor trustee or executor of estate to me.
I really can’t say whether what is going on is “allowed” or not. I think it partly depends on the legal documents involved, and also on the laws of the state where your step-father resides. If you are concerned about the expense of an attorney, I would recommend contacting your local Area Agency on Aging and asking if there are any low-cost legal services available in your area. If you are concerned about exploitation or manipulation of your step-father, you could also consider contacting Adult Protective Services.
Good luck!
Hello Dr Leslie,
I have recently been diagnosed with narrowing of the small blood vessels in my brain. I have suffered from Lupus for many years and have been on Voltaren for many years for pain. Should I continue this, as I have read that this may affect this disease further? I take blood pressure reduction tablets and also at times of great pain – Tramel? I am currently using natural therapies also for pain reduction.
Thank you.
It is not for me to say whether you should continue Voltaren or not; this would require a one-on-one medical encounter, and even then, I’m not a rheumatologist and probably don’t have the expertise to advise you regarding lupus treatment.
Lupus is a serious chronic illness. Whether or not you should continue a given therapy depends on what the pros and cons appear to be for you, and on what the pros and cons are of the available alternatives.
I will say that diclofenac (Voltaren) is a non-steroidal anti-inflammatory drug (NSAID), and that in geriatrics we try to minimize NSAIDs because they have risks for older adults. However, for some people, the likely benefits still outweigh the risks, and you might be one of those people.
I would recommend you discuss your medication options with your rheumatologist. (Most people with lupus are seeing a rheumatologist.) You should also be sure to bring up your pain, so that your doctors can help you find better ways to manage it. There are many medically proven non-drug therapies available to help people with pain. Good luck!
My 87 yr old grandfather has given away $500k to a crook and is now sending text messages to a 30 yr old who is using him for money. She is trying to alienate him from the people that love him. I’m scared for him but he is having a type of sexual relationship and the doctor told me that’s not possible with his health. He lost my grandmother 10 yrs ago and he hasn’t been the same since. Advice? I’m on his money accounts (bank ira etc) and have a power of attorney if he becomes incapacitated. I am also executor on his will. I have mentioned these behaviors to his doctor but don’t feel I’m taken seriously. HELP
Yikes, all that does sound very concerning. He does sound like he might be lacking capacity for some of his financial decision-making at a minimum, as giving away all that money doesn’t sound like it’s in his best interest.
Here are few ideas that might help:
– You should probably persist in trying to get help from your grandfather’s doctor. It might help to specify that you think your grandfather is being financially abused. Ask for the doctor to help assess your grandfather’s mental capacities.
– A POA document usually specifies whether the agent can act right away or only after a person has been deemed incapacitated. You should start working on gathering that evidence. Exactly what is needed depends on the purpose at hand; the POA document itself should specify the criteria for being incapacitated. Whereas if you want the bank to stop letting your grandfather withdraw money, they would have to tell you what their requirements would be. (It might be easier to hide the checkbook and ATM cards while you try to sort things out.)
– You can call Adult Protective Services if you think your grandfather is being financially taken advantage of. You can also potentially contact the people in touch with your grandfather and warn them that you are his POA and that you think their activity qualifies as elder abuse. State laws govern the criteria for abuse and the penalties. Obviously it’s even more effective if a qualified elder care attorney contacts the likely abusers.
– Your local Area Agency on Aging (find them through eldercare.gov) may be able to direct you to other resources that can help, including low-cost legal services if any are available in your area. You can also try the Family Caregiver Alliance Navigator resource service.
– For moral support, try an online support group. There is a very active caregiver forum at AgingCare.com, with people who have been in your situation. (There are also occasionally experts who weigh in.)
Good luck and keep at it. It’s a difficult situation but it sounds like he really needs your help. He probably doesn’t know it, but he is VERY lucky to have you looking out for him.
I have a situation where the neuro-psychologist says the POA for my mom’s health is invalid because the doctor said that my mom did not have capacity of knowing what she signed. Here is some history of events up to that point. In June 2017 my half sister took my mom for several medical examinations. We (my biological siblings) found out about them through my mom. Once we found out, we asked my mom if she wants to create a will, Durable POA and living trust. She said yes, and those were drawn up, but not signed in June 2017. We thought we were waiting for affidavit of death for my Dad and the Deed of Property into the Living Trust before my mom could sign it. My dad bought the current home my mom lives in with my mom when they were married. They divorced and my Dad passed away. The Document Preparer was calling my mom since June 2017, but not able to leave a voicemail and a few times got a hold of her. My mom said she would ask her grand daughter to take her or her daughter, my half sister, to the office to sign it. That never happened. A few times I called them and no response back, despite the fact that I’m the Primary Executor and POA on it. In January 9, I took my mom in to sign it. Between June 2017 and January 9, 2018, my mom has undergone a few memory tests. I called the social worker, who initially worked with my half sister. I informed her that my half sister did not inform the rest of my mom’s kids of what’s been going on, instead we learned of it through my mom when she told us that she was going for an annual checkup. I told the social worker I have the Durable POA and she could talk to me. The social worker told me to fax in the POA so the doctor can see if it is valid. I called back 4 days later, and the social worker said the doctor who conducted the memory test said the POA was not valid, yet did not say based on what and when. It is very frustrating, because my mom was quite aware of who she wanted to handle her affairs at the time of signing the documents and still is. The doctor has not given us any official document saying my mom is not incapacity of making decisions and signing legal documents. We are supposed to meet with the doctor in a week, and what questions should I ask? I am trying to figure out if I need to seek conservatorship. We ( my mom and her kids) live in California, so not sure what the law is on determining when someone is not in capacity of making legal decisions, who is that legally determined by; and is that person responsible to inform all the children of the parent prior to the parent getting to that state?
Hm, it does sound like a tough situation. Capacity issues are generally determined by state law, so to get definitive answers you may need to consult with an elderlaw attorney in your state.
But to respond to some of your questions based on the general principles as I understand them:
– A person does have to have capacity at the time of signing a legal document, for the document to be valid. If a document is drawn up but then signed six months later, what matters is did the person have capacity at the time of signing.
– As far as I know, if you are the designated POA on a document that has been drawn up but not yet signed, you don’t have any legal rights.
– Most states, including California, require separate POA documents for health versus for legal affairs. Is it possible that you were told the POA is not right because you sent in a general POA instead of the durable POA for health?
– I’m not aware of any requirement to notify all of a living person’s children, when legal documents are being signed.
– I do think it’s good to notify social workers, clinicians, and others if there have been issues between different siblings, because it’s useful for us as clinicians to be aware of family dynamics. That said, we ultimately decide what to reveal to family based on the patient’s preferences, existing legal documentation, and other factors. HIPAA does give clinicians a fair bit of leeway, you can learn more here: 10 Things to Know About HIPAA & Access to a Relative’s Health Information
– Doctors do not routinely provide families with an “official document” saying a patient no longer has capacity to make legal decisions. Basically, doctors will usually only provide a document or statement on request. I’m not sure that we are required to provide such statements to family, although clinicians often do, especially if they understand how the statement will be used. (In court? To satisfy the requirements of a POA document or trust?) We do of course have to provide statements to the court or to Adult Protective Services, when it’s requested.
Since you say that your mom had some memory testing done between last June and January, it sounds like there is reason to wonder if she had the capacity to sign documents this past January. Now, even if she’s having memory problems and even if she’s been diagnosed with dementia, that should not be used to automatically disqualify her from signing documents, because she still might be able to understand the document and options well enough to do so.
However, if there have been memory concerns, before you get a legal document signed, it’s a good idea to get at least some type of written statement from a doctor or other qualified professional, providing an opinion on whether the person appears to have the capacity to make the decision in question. If nothing else, it could be brought up during a medical visit and the doctor’s impression (or what he/she did to address the question) can be documented in the medical chart.
In terms of what you can ask the doctor during the visit, you might ask:
– what does the doctor see as the problem with the POA document?
– If the doctor thinks your mother was lacking capacity at the time of signing: what led the doctor to that conclusion? Did the doctor or someone else ask your mother questions specifically about her understanding of the document and what she was signing?
– If your mother has no valid POA but is losing capacity, who is the doctor planning on turning to, as a medical surrogate? (most states allow doctors to default to a next-of-kin if there is no legally designated healthcare proxy)
If you remain stuck, you may have to look for legal assistance. You can try calling your local Area Agency on Aging (find it via eldercare.gov) and ask about any free or low-cost resources for families in your situation.
You can also try looking things up in the California legal code, for instance here is the section on legal mental incapacity.
Hope this helps, good luck!
My father is at the end stage of life with multiple myeloma. I have found he has dementia and delirium. The hospital did a test on him and he failed to hold capacity. My dad escaped hospital and has been in and out all the time now but will not take any more test. The hospital has failed and prolonged this and now has sent a letter to say that the hospital is looking after him and he hold capacity. I hold power of attorney once the dr signs him off. He is behind on bills and cannot take care of himself let alone drive or make decisions. He is on a high dose of medication and has been for years and years.
This sounds like a difficult situation. If your father is unwell and confused, he may well lack the capacity to make his medical decisions or even other decisions. You may want to persist in bringing this up with the hospital. Unfortunately, when there is a difference of opinion between a family and a hospital, it’s sometimes necessary to seek legal counsel. You may also want to look into what are the laws regarding capacity in your area; in the US they are state-specific. Adult protective services would be another possibility.
Last but not least, an area on aging or other non-profit may be able to give you advice re your options. Your father’s situation is difficult but unfortunately not unusual. Good luck!
My husband has had dementia since 2011. I am his Agent on his Springing Durable POA done in 2004. It states one physician and I have to show he is incapacitated. I have a letter from his neurologist stating my husband should not be making medical or financial decisions. How do I activate the POA.
Due to my health issues, last month he went to live with his daughter, she does not want him in a facility. She called our lawyer and had my husband change his medical POA over the phone. I was not told. I am scared she may get my husband to get into our joint income bank account and remove money that I use to pay our household expensive. I don’t know what to do. Thank you for your blog.
Sorry to hear of your situation. I am not an attorney; the following is my opinion, not legal advice, and I would recommend you run it past a qualified attorney. Here is my understanding of what is relevant to your situation.
A power of attorney document is regulated by state law. So it would be state law and whatever is the document that determine when the agent’s authority becomes active. For instance, in California’s legal code it says:
“(a) In a springing power of attorney, the principal may designate one or more persons who, by a written declaration under penalty of perjury, have the power to determine conclusively that the specified event or contingency has occurred. The principal may designate the attorney-in-fact or another person to perform this function, either alone or jointly with other persons.
(b) A springing power of attorney containing the designation described in subdivision (a) becomes effective when the person or persons designated in the power of attorney execute a written declaration under penalty of perjury that the specified event or contingency has occurred, and any person may act in reliance on the written declaration without liability to the principal or to any other person, regardless of whether the specified event or contingency has actually occurred.” (Section 4129)
This suggests that if your husband has been declared incapacitated, you need to complete a statement saying the event has occurred. (Seems a good idea to include a letter from the neurologist or clinicians as backup, if possible.) You should then be able to submit the POA with the additional documentation, and be allowed to act for your husband.
Now, as far as I know, most states do not have some kind of registry in which one can document that a POA has been “sprung” or that an older adult no longer has authority to manage affairs (unless the older adult has been conserved or had abilities limited by the court).
So even if you have the documentation to act based on a springing POA, keeping banks or other entities from accepting the older person’s directives can be complicated.
In terms of your husband changing his POA due to his daughter’s influence, to change a legal document he would have to have enough mental capacity at the time he made the change. If you think he didn’t have this capacity, you can contest the change. Probably you can start off by writing letters warning his daughter that the change likely isn’t valid, given the opinion of the neurologist. This might be enough to get her to back off. You can also check your state laws as many of them have statutes about financial exploitation or undue influencing of vulnerable elders, and you can warn her if her actions seem questionable.
If you are really concerned or your husband changes his legal documents or finances, and you think this was due to impairment, then you may need to seek legal representation.
You can also try calling your local Area Agency on Aging for advice. This situation is not so unusual, so they may have suggestions as to your local resources for addressing these types of concerns. Good luck!
My aunt, for whom I provide aid, comfort, and company, was taken to the hospital by police after a confused call concerning the theft of her car (it was in her garage!), and was assessed by two doctors as incompetent. I am it total agreement with this, having witnessed significant confusion for at least three months prior, snd some confusion, to a lesser extent, in the few years before. She had a CAT scan too, with a diagnosis of vascular dementia.
Her son is managing her affairs with a non-springing POA.
She is angry and disagrees with the assessment, legal arrangements, and her current residence in assisted living, in addition to the State nullifying her driver’s license due to her medical situation. She consulted a lawyer who said he could not enact any legal measures due to her incompetence. She is doctor-shopping to try to “get her competence back”. Is there any other measures she should take? She feels she is being railroaded, and trusts no one.
Sorry that you are facing this difficult situation. Well, it sounds like she is chronically mentally impaired and probably won’t recover the ability to manage her affairs. It’s not uncommon for people like her to have very little insight into their limitations and to ferociously resist the attempts of others to intervene.
Are you asking what measures you can take? As you may know, it generally doesn’t work to try to reason with the person or persuade them. One way to support her is by allowing her to vent all her frustrations and then redirecting her, if possible. She needs to be allowed her emotions. She will benefit from feeling that you are there, even if you can’t do everything she wants you to do (e.g. restore her full autonomy). You might find it helpful to read our article on managing dementia behaviors without medication: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications).
There are also good tips from Family Caregiver Alliance here: Communication (for dementia). Good luck!
Great article, but I could not find suggestions when a parent is vehemently fighting against any help.
Symptoms are: mobility limitations (scarcely walk after broken hip), poor financial decisions (not paying insurance or filing tax returns, hoarding assets), risky behavior (hitchhiking when car breaks down), insisting everything is under control ….when it’s careening out of control. There is are assets so she could live with dignity and without predatory debt, but she refuses to liquidate them. She’s so stubborn and angry, she won’t allow help. What’s the key to unlocking the door here?
Sorry to hear of your situation. It’s not an uncommon one.
Unfortunately, there is no easy key to unlock the situation. The issues you describe regarding the finances and risky behavior and lack of insight are all concerning for possible cognitive impairment. This would need to be medically evaluated, however many older adults with these problems will then refuse to get evaluated, they are often feeling very defensive and upset and are hence even less likely to go see a doctor at their family’s suggestion.
I have some suggestions on getting help for a resistant parent in the second half of this article: 6 Causes of Paranoia in Aging & What to Do.
Basically, if it’s impossible to find a way to coax the older person into getting assistance and a medical evaluation, then one generally needs to consider calling Adult Protective Services. Some families also start looking into requesting guardianship, especially if there is no durable power of attorney allowing them to step in.
A trained geriatric care manager can often be very helpful in identifying options to manage this type of situation…they do cost money but can save you time and some stress. Good luck!
My husband had a stroke 5 years ago which resulted in aphasia, and non-use of his right hand. He is able to walk with a cane. He is able to dress himself, bathe himself with assist., is continent, can print his name with his left hand, follow commands, and understands what people say to him, but his speech is not understandable other than limited words he can say. Can he be considered to be incompetent? He can recognize friends and family members but can’t say their names. He can show me directions when I am driving by pointing i.e. go straight, turn, etc. and knows when I ask him how to I get to person’s house, store, etc. can point out directions to get there.
Aphasia and the inability to speak does not mean the person has lost capacity. Capacity is about having the ability to understand a choice at hand. It sounds like your husband does understand things, and with suitable accommodations to help him express himself, he should be able to convey what he understands and what he would choose.
Now, sometimes it is challenging to determine just what a person with aphasia understands, because they cannot communicate as easily with us as someone with normal speech can. But in principle, one should take the extra time necessary to allow them to express themselves.
I would recommend checking with occupational therapy and/or with a stroke rehab specialist, I believe they have particular experience helping people with aphasia express themselves. They may also be able to arrange a specially adapted capacity evaluation, if it seems one is needed. Good luck!
My mother is 83 yrs old and owns a trailer park. She is not able to walk well, see well nor remember very well. She thinks people are breaking in her home and stealing her food. She has her tenants read her meters, take her trash out and pick her up off the floor daily. Some tenants havent paid rent in 4 months because they know she cant do anything. I buy her groceries, pay her bills and balance her check book. She refuses to leave. How can i get her out of this horrible situation that she is in? She has no power of attorney at this time. I need help.
Sorry to hear of your mother’s situation, it does sound concerning. I would recommend helping her get a cognitive evaluation, as it sounds like something might be wrong with her memory and thinking.
Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check
If her tenants are taking advantage of her, you might also consider contacting your local Adult Protective Services (APS) office. Your local Area Agency on Aging should be able to put you in touch with APS, and can also advise as to other local resources that might be available to assist with your situation. Good luck!
I want to thank you for this article or blog as it may be. I live in Canada and recognize much of the advice is USA specific, (other than it also pertains to Canada with provincial legislation type of advise.
I’m in my 50’s. My mother passed away from cancer last year. While I fully recognized that my Mom was protecting my father as we, “chatted” daily on-line or when she got more ill in person I saw his deterioration. I understand after 59 years of marriage it is hard to see with clarity the one and only husband you’ve had. I tried to say to my father that she was my only mother too for 53 years. (That didn’t help his loss.)
The short of it, he has been in and out of hospital for many of the reasons stated by followers and yourself. He was in a significant car accident, “looking for my mother” on a HWY that was no where close to where they ever lived. He went down one way streets the wrong way twice in 15 minutes when I was in the car with him. (That was the last time I was in a car with him and yes I had his driver’s license revoked.)
Today I received notification from the hospital that the geriatric psychiatrist has deemed him incompetent as he does not recognize the consequences of any of his actions. He failed every test that the OT provided to him prior to the psychiatric assessment.
I am incredibly sad. Parents watch their children growing up with joy. This is the reverse of that. It is hard to breathe when you realize you are responsible for? Everything.
What I do want to say to anyone that reads this? Please get the legalities and finances in order, if you possibly can, prior to it going, “pear shaped”. It took me over a month of explaining to my father daily what a POA meant (even though he had one for my brother). I did get most of the finances in order before today, a few are outstanding and indeed I’m not sure if pressed they would have stood up even though they represented a similar if not identical method of dealing with previous issues.
No one wants to deal with these issues. I’m asking any that still have loved ones in the picture that are competent to have that difficult conversation sooner than later. You never know when later is too late.
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Thank you for sharing your story and this comment.
I agree with you, no one wants to deal with these issues but when they aren’t dealt with early, it can cause a lot of problems down the line.
I’m glad you find the site helpful and appreciate your taking the time to let me know that.
This is the best article I’ve found in my research. Easy to read and understand-including the many comments and situations described. Thank you all for this information.
My mom is 75 and generally physically healthy and financially healthy. She has lived alone and thrived for 30+ years. After retirement-she became acutely depressed. Ultimately admitted to psychiatric hospital and resolved at one year with meds. Subsequently, my 40 y/o brother was diagnosed with cancer. She basically lived with his family and supported them well for 2 years. When his cancer returned in March of 2017 she decompensated acutely again. She was still under care of psychiatrist who could “not get your mom back” despite trying every drug I’ve heard of. (I am a physician). My brother passed in 9/17. My mother refused all efforts and offers for help with counseling, griefcare, church, ECT therapy, hospitalization again, moving in with me, moving to care facility. She has stopped seeing psychiatrist last fall because my mom literally refuses EVERYTHING. I’m making her see her PCP for the 3rd time tomorrow. He was able to get her to take 2 more meds on threat of taking keys (3 fender benders). The meds are not helping. Mom sleeps/lays in bed all day and night. She refuses friends. She doesn’t bathe regularly, rarely washes her hair. Doesn’t clean house. Eats 2 corn dogs every day and sometimes ice cream or pizza for dinner. Refuses to shop or be taken to buy food. Will not talk at all. Answers only “I don’t know” or “no” to most questions. I visit 2x -3x weekly-my youngest brother has visited occasionally and keeps her house in check maintanance-wise.
When we voice concern she just shrugs her shoulders. I believe she’s stuck in her grief and depression but when I ask her about this she says “how do you know I haven’t just given up?” She denies suicidal thoughts. She NEVER initiates contact with her friends, 2 kids, 8 grandkids all who love her. She’s completely isolated herself.
My brother and I have had many conversations with her about our concern. We established that she trusts us. Yet she absolutely refuses to discuss much less sign legal POA. We have explained the consequences and are concerned she could become physically ill and has not assigned medical POA either. She just says we will talk about it when she feels better-it’s been 2 YEARS.
My question is simply-what’s the next step? Im thinking I should document all of this in written form to her doctor. But not sure if it’s time to seek incapacity framework legally. She keeps saying this is how she wants to be.
Thank you for any insight you may be willing to offer.
Kim
PS just saw the QuickStart guide below so I’ll check that out.
Glad if you found the article helpful but wow, sorry to hear about your mother, it sounds like an exceptionally difficult situation.
In general it’s often a good idea to document things in writing and send to a parent’s doctor; they need to know about important health issues and also it is part of documenting that all other alternatives were tried and failed, if you do decide to consider guardianship or another legal method of obtaining the right to intervene. The main reason to perhaps not write to the doctor is if the older adult has expressed forbidden it or if you think they would really be upset…and even then, the likely benefits of writing to the doctor often outweigh the risk of damage to the relationship, but it is something to consider.
It sounds like she might meet criteria for self-neglect. There are usually no easy next steps, but generally you do want to get the health providers involved (as you are doing), you can consider calling APS, and then depending on the situation, yes, you may want to consider taking legal action that would allow you intervene. You will need to think through the benefits and burdens of going with that versus the alternatives. It can help to clarify just what might be possible if you do get a legal determination of incapacity. As you probably know, even when older adults are under guardianship, it can still be extremely hard to get an older person to comply with the guardian’s decision and in many states, there are special considerations for psychiatric treatments. (Her psychiatrist would presumably be familiar with them?)
We have a podcast episode on self-neglect, which includes links to resources:
066 – Interview: Addressing Potential Self-Neglect in Older Adults
Good luck!
I found this article at the right time, as I’m struggling with capacity/competency. I have a Durable POA and HealthCare Surrogate for my mother- 74. We have watched her memory slip since 2016 (MRI confirmed brain abnormality), to which she refused to have any follow up neuro testing and banned the family from speaking to her doctors. It was a run in with the neighbor and a temporary restraining order in 2018 that forced our hand in getting her neuro tested last year. She was officially diagnosed with major cognitive disorder. The Dr was concerned about her getting lost (she admitted to getting lost out of her local radius) reported her to the DMV and her driving cognitive testing showed that she shouldn’t be driving….so license was revoked.
She lives in Florida and I’m in NY. She is fighting the diagnosis and feels like she’s been railroaded. She blames me for her situation and is so hateful to me! I know its the “brain illness” and not her. But I’m having difficulty, as she has told her doctors not to speak with me and while they have a copy of the POA…she is VERBALLY overriding it She is socially isolated with no friends or family locally, but does have someone come to the house 2x a week to drive her on errands. She is not taking her medication correctly (if at all), she’s not paying bills on time, taxes and constantly having late fees or disconnection notices. She is more fixated on losing her license, than the fact that she was diagnosed with Major Cognitive Decline…total lack of insight about how they relate.
Neighbors have called Adult Protective Services 2x, but after a 20 min visit they never seem to be concerned cause the house is clean and there is food in the fridge. She over feeds her dog, cause she forgets that she already fed it. Then she gets upset and wants to take it to the vet thinking it’s ill cause it won’t eat…it’s not hungry!
I’m just at a loss of how to walk the tightrope of her feelings vs her wellbeing physically and financially. I’ve been trying to take over financial stress and convince her to move to Texas to be closer to family, but she refuses. It’s so hard to help the unwilling/ungrateful, when I have this worthless piece of paper- Durable POA . If Dr have declared her Major Cognitive disorder…but still won’t speak with me, how do I get capacity/competency declared? Seems the system is one big failure!
Sorry to hear of your situation. It’s actually not uncommon, and yes, it is often really difficult to figure out how to intervene when a person has developed cognitive impairment. A POA helps but there are still often lots of hurdles to clear, as you are discovering. If she really is impaired then technically she should no longer be allowed to override you, but many individuals and institutions might still allow her to do so, unless there is some kind of “official” declaration that she can’t make certain decisions anymore.
What constitutes this “official” declaration seems to vary depending on where people are and which institutions are involved. Some will accept a doctor’s written declaration that a person has lost capacity; in other places it seems necessary to go to court. Most of the time the older person is impaired but aware enough to realize they are losing control and they are often very upset about it.
I would recommend connecting with others trying to help aging parents, and also talking to an eldercare attorney in your mother’s state. A geriatric care manager in her area is also likely to be helpful, they will have helped families through similar situations. Good luck and hang in there! Even though she’s mad at you, she almost certainly does need your help and she is lucky to have you trying to sort this out.
My wife is 50 and is 10 years post a lifetime dose of WBRT after brain surgery to remove a tumor. Pathology determined it was metastatic melanoma (stage IV). Today after a successful treatment as part of a drug trial she is cancer free for the last 6 years.
Now she has cerebral, micro vascular disease and global atrophy. Cognitive neurological assessment shows she is impaired in all areas except long term memory. Is there anything we can do for her?
Sorry to hear of your wife’s condition. I’m afraid I’m not really sure what you’re referring to, in terms of what can be done. Your wife’s cognitive impairment doesn’t really fall into geriatrics, because she’s younger and it sounds like it’s related to cancer treatment. A health provider with more experience treating such people would be better suited to advising you, and have a better sense of whether she’s likely to improve, etc. Good luck!
My 89 y/o widowed father-in-law has his granddaughter as his POA. It was my understanding she was his financial POA to take care of his bills and such after my mother-in-law passed. He has since been placed in assistant living by her since he could no longer live by himself with the onset of dementia and failing health.
We were notified that she was using a company called OpenDoor to sell his house with them paying off the reverse mortgage and profiting $100k for his care. The closing would be the following week, Tuesday the 18th. He has since fallen gravely ill last night and with a DNR are calling the family in.
My question (I’m sorry it took so long to get to it) is, If he is still alive at the closing of his house, does the profits go into a trust to pay for his care? If not a trust does it go to the granddaughter who has POA? If so, and there is money left after his passing, does it go to his estate to be part of his Will? I assume if he does pass before the closing the house goes to probate to be handled by the executor of the Will.
This is all happening quite quickly and concerns my husband and myself. Any help or advice you can give would be very much appreciated.
Thank you
Sorry to hear of your situation. Unfortunately, it’s beyond my expertise, I’m not sure what happens to the profits of the closing if he is still alive. It may depend on the laws of the state in which he resides, as the authority of POAs is a state issue. It’s possible that the money would be delivered to his POA, who then would get to decide where to deposit it and/or what to do with it. Once a person dies, all assets become part of the estate and are handled per the will, probate, etc.
I would recommend you consult with an elderlaw attorney in your father-in-law’s state. Good luck!
There is no shortage of documents for family members and caregivers but I have yet to find a document that I can provide my 75 year old mother, recently diagnosed with vascular dementia, who for years refused opportunities for assessment (until January and April this year, indirectly, long story) refuses to accept the doctor’s diagnosis, refuses treatment and medications and additional testing and assessment. The rest of the story is long and complicated. For now, I need something in writing that I can give her to read over and over and over again that will help her to understand what she is experiencing (because although she says there is nothing wrong with her brain and she’d know if there was, there is and she may but she is denying it) what he doctor and I are trying to accomplish, which is to help her, slow the disease as best we can and ensure she is safe and can continue to live independently.
Explanations can work for some people with dementia but often do not work. I think any written document would have to really be tailored to the individual person, and would have to be based on something short that had been reasonably helpful when told orally to the person. The only way to know what — if any — explanation will work is to experiment and try. For some people, explaining that they have dementia (or a “brain problem”; there are many ways to try to frame this) and hence need to let you do XYZ works; for most, it doesn’t.
I would recommend you work with her usual doctor to try to figure out what you can say, to help her feel better and/or cooperate with what you are trying to do for her. If the doctor doesn’t have experience communicating with people with dementia, you may want to look for a dementia behavior specialist to help you with this.
I would also recommend you find a support group for dementia families, as you’ll get lots of ideas and support re communication with your mom.
Good luck!
My grandfather is 93yr old. He married a younger woman from Mexico. We live in a border town. She crosses the bridge every month to ask for money. She never takes care of him or wants to take care of him. My mother has been taking care of him and even made an extra room for him no rent nor utilities are paid by him. He is just worried to give money to the so called wide every month. What do you suggest to be done in this situation. He gets close to 1200 every month.
That’s a tough situation. If his memory and thinking are generally ok and he seems to have decision-making capacity for this choice, then he’s allowed to do it. It’s still possible that the situation might qualify as financial exploitation, and of course, I see why your family is concerned.
This article might be helpful: Financial Exploitation in Aging: What to Know & What to Do
I will add that it was your mother’s choice to take him in and not ask that he pay rent or contribute. Especially if he’s not impaired and has capacity, she gets to choose whether she continues that arrangement. She could potentially tell him that she’s not willing to continue with the current arrangement, and that she needs him to make some contribution to the family’s expenses. But of course, once someone is 93, it’s very hard to set that kind of limit, especially if he is frail, or otherwise is unlikely to be able to live on his own.
Good luck!
we have just received bank statements from my mother in laws accounts she receives a lease payment of 21450 every 4 months and says she can live on it as she has to pay tax and she doesn’t think she should have to. Over the last 2 and a half years she has spent 440000 thousand dollars. She spends 400 a week on cloths and 300 a week on groceries. She now wants to sell family farm as she cannot survive this is worth 2 and a half million we have warned her about the tax she will have to pay as this was left to her 3 yrs ago. My husband has EPA and is worried that she will spend all the money within a few years and will not pay her Tax and will end up bankrupt. How can he stop this from happening
Wow, this certainly sounds worrisome. Well, for these situations I generally recommend starting by asking yourself: are there signs that she has an ongoing problem with memory or thinking? If so, then explanations are not going to work, they will just antagonize her. And if you think she is impaired, then it becomes ethically justifiable to try to intervene, if she doesn’t want you to.
(If she’s not impaired and seems to have mental capacity, your mother in law (MIL) has a right to be financially irresponsible.)
If your spouse has power of attorney, the document will specify under what circumstances he can intervene. If he has the legal authority to intervene but she has different ideas, then he may need to consider a court action to take over her finances and prevent her from doing things she doesn’t understand that are detrimental to her financial safety.
You may want to consider consulting with an elderlaw attorney in the state where your MIL resides. good luck!
This is very good information but I still have questions. My mother in law is battling stage 4 lung cancer. In the past 6 weeks she has been in and out of the hospital for breathing issues. She is maxed out for radiation treatment and is now in an immunotherapy treatment that none of the family knows if it is actually doing anything to help. The doctors will not talk to the family and will not discuss “Prognosis” or “timelines” with anyone. She is on oxygen. She continues to smoke. She lives alone. She is managing her own medications (which one of the doctors in the hospital made the comment that she is not capable of managing her own medication). She isn’t eating or drinking like she should. She cannot (or will not) make herself anything to eat. She has a potty chair but refuses to get out of bed unless someone is there and makes her get up and has to help her get up. She refuses to go to a nursing home willingly. She doesn’t have the money nor does the family have the money to pay for in-home care, Hospice cannot be called to come in and help because she is still undergoing treatments. There is only 1 family member who lives close enough to come check on her but that person has a home and family and children to tend to as well so she cannot be there 24/7. Because she refuses to give up smoking, the family member is not willing to have her move in to her house. Volunteers were lined up to come help but she has run them all off with her mean and nasty attitude and the fact she poops/pees on herself without even saying anything to anyone that could have gotten her up to the potty. She will go hours sitting in her feces because she passes out from taking the medication. We are at wits end… we don’t know what else to do. I have thought about calling APS but from the way this article sounds they may not deem her incapable to do anything but take care of herself. If you catch her at a good moment she sounds lucid and competent, but if you catch her when her medication is kicking in then she talks crazy. What else can we do?
Sorry to hear of your situation, it does indeed sound difficult. Well, it sounds like your family has tried to offer help but your mother in law is not cooperative. You don’t say how old she is. I imagine the illness and/or the treatments are affecting her mental function at times. And, you can only do what you can do. You could try calling APS if you are concerned about self-neglect. They may not do anything, but at least you will have taken an action and again made an attempt to help.
I also wonder if you might be able to help her get a palliative care consultation. This is not quite the same as hospice; a palliative care consult should be able to help address prognosis, her goals, and options for moving forward. Those options may or may not include hospice. (Hospice is really a particular type of palliative care service.) Most hospitals offer palliative care consults, and some cancer clinics do as well. You can learn more here: GetPalliativeCare.org.
Good luck!
My 85 year old grandmother has been duped by Nigerian scammers. They have her convinced she is paying taxes on 32 million dollars to be able to bring it to America (it is USD) (allegedly) She sends them pretty much all her Social Security and now she got a life insurance check due to my grandfather passing. She has been shown proof by myself, other family members and FBI that this is a scam. She refuses to believe this. Now I am worried she is going to send this money to these people and she is going to be right back where she was, hungry and broke. On top of the life insurance check she recieves almost $3k every month from Social Security…its all gone within days of receiving it. Everyone else in my family just enables this, and acts like they don’t see. I am the only one standing up about this. I am stuck feeling. I won’t stand by and watch her give her money to these crooks and watch her starve…what to do?
Yikes, this does indeed sound worrisome. I have information on what to consider doing and resources listed in this article: Financial Exploitation in Aging: What to Know & What to Do.
Re refusing to believe it’s a scam: your explanations haven’t worked, so you may want to stop trying to explain as much, as this may be increasing her stress and you will be more likely to succeed in intervening if she feels less conflict with family. Good luck!
I have a very difficult 79-year-old Mom who lives by herself (Dad died 6 yrs. ago) and am her only child. She resists anything I have to say or suggest concerning her safety and sharing her medical information. She’s very private (with me), but freely tells others about her testing Dad’s gun five years ago and how it ‘went off’ in her home.
I see her progressively become worse (as others have too) in the past few years – not able to complete tasks that used to be easy for her, allowing a LOT more mess and piles of papers around her home (even when she knows her family is coming), having difficulty understanding how to turn on a/c at beginning of summer, difficulty understanding that when a/c is off AND her windows/doors are closed in the summer, she can cook herself, along with her defiance and anger that she’s being told what to do or if I ask anything about her.
All this I’ve detailed in two letters to her PCP since mid-July. I am having difficulty obtaining an assessment. Mom hasn’t signed HIPAA at PCP office, I’m not allowed to go with her to dr visits, I have Advanced Directives which my lawyer/Mom’s lawyer says is enough to view dr’s notes and also have POA. Front office staff suggest I go with Mom to her next appt., which they moved from December to November (I’m guessing because of the concerns I’ve detailed in letters). I told them how mad she would be to know we’ve talked and that she doesn’t ‘allow’ me to go to her doc appts.
To make bad things worse, her doc of three years left and is now practicing in another state. Mom says she will call her insurance company to find out where he’s practicing now and intends to follow him. Of course, I am NOT able to tell her that he is in another state (because I’m a know-it-all who always thinks I’m right).
My concern is Mom won’t go to another doc in the office that has her records, allowing MORE time to pass before she’s examined for a diagnosis or assessment of capacity.
Unsure what to do at this point. Thanks for you help. I do love your podcasts and have learned much from them AND your written articles on your website!
I agree, these symptoms sound concerning, so I’m glad you are pushing to have her evaluated. You are doing the right things, but of course, these situations are complicated. From what you say, it sounds like you have POA documents that are already effective and don’t require your mom to first be documented as incapacitated. I believe does give you the right to request information from her health provider now. However there is no guarantee that they wouldn’t reveal this to your mother (although they would probably be discreet if you asked them to), and if she found out and asked them to not talk to you, technically she gets to override you, unless they conclude she’s impaired and it’s not in her best interest.
Since her PCP has moved away: could you ask the other doctor in the office to contact your mom and say that her prev PCP is asking her to come in to see a colleague?
I have other thoughts, but they are more than can fit in a comment. That’s why we started a membership for people like you, actually: so that I could provide ongoing support in navigating these situations, because they do take a while. You can learn more here: Helping Older Parents Membership.
Good luck!
My 88 y.o. mother has been diagnosed with severe advanced dementia. She has become a flight risk. Most all the time she doesn’t know where she lives, or that she lives with her mother in another town or thinks someone else owns the house she lives in. The caregiver hired has limited caregiving experience with mom’s diagnosis and has openly lied to me how Mom is doing, ie bathing, walking off.etc.
My brother Mike has been, behind my back, had my mother sign legal documents.
I am POA medical. My brother Mike has no authorities except has his name as ‘and/or’ on the trust papers. My other brother David, is POA and Advocate.
David and I are going to trial for guardianship and conservatorship.
Question: Can my Mom legally sign papers being this confused? She has been diagnosed by a neurologist.
To legally sign papers and complete a valid transaction, the person has to have capacity for that particular decision, which means understanding what they are signing and the consequences. Generally people with early/mild dementia often have capacity for certain legal documents, but people with more advanced dementia who are chronically confused do not.
Now, an attorney is supposed to check that the client has capacity, but they may or may not do this.
If a person legally signs papers when they were in fact confused and had a well-established diagnosis of significant dementia, the transaction can probably be contested. However, doing this may require getting your own attorney and possibly filing a claim.
If your mom hasn’t yet signed, you could consider notifying the involved attorney of your concerns, however, they often feel they have to disclose to their client (your mom) that an adult child contacted them with concerns.
Since these concerns are quite common among people concerned about an aging parent, I interviewed an elder law attorney recently, you may find this podcast episode helpful: 097 – Interview: Common Elder Law Issues When Helping Aging Parents.
Good luck!
Im medical POA for my 79 year old mother. She has been hospitalized four times the last few months for the same issue. The doctor now is doing a procedure immediately which I feel mom doesn’t understand the risks. The doctor says she is able to make decisions but I have noticed her inability to truly understand all medical benefits, risks and complications because of memory and stress both physically and mentally. Does doctor have right not to discuss with POA about plan of care? What rights do I have as POA to ensure mom truly understands what doctor has told her before the procedure takes place?
It sounds like you are concerned about the health provider’s assessment of her capacity to provide informed consent. I think it’s certainly possible that the provider is over-estimating her understanding; many providers assess capacity in a fairly cursory way, whereas it sounds like you’ve been observing your mother carefully and so your concerns are worth taking seriously.
The doctor should be willing to discuss things with you if you are your mother’s POA, especially if she seems amenable. I would recommend communicating your concerns to the involved health providers, in both conversation and in writing. Be very explicit about what your concern is, and why you think your mother may not have capacity to consent to the procedure.
It may also help if you are explicit about what you are asking the provider to do. Are you asking for them to allow you to decide about whether to do the procedure? Are you asking them to get a second opinion re your mother’s capacity? What is it you want them to do?
If the provider is reluctant to engage, you could try being clear that you are concerned that they are proceeding without adequate informed consent, that you have documented in writing why you think your mother does not actually have capacity to consent (and/or why the procedure is not in line with her goals or care and/or truly necessary), and that if they will not engage with you, you will be notifying the hospital and/or the provider’s supervisor, because you need someone to take your concern more seriously.
Your mother has a right to provide consent or to have her POA provide consent if she lacks capacity. Determining capacity is a judgment call but I think you should be able to push for more careful consideration of her capacity, if you really think she doesn’t understand the risks and if you think the procedure may not be likely to serve her well. Good luck!
Can a doctor say the person has capacity to name a Health Care Proxy Agent if the doctor has said they do not have capacity to make difficult health care decisions?
In principle, I would say yes. Capacity is supposed to be decision-specific, and some decisions are easier (or may require different parts of the brain) than others.
In many cases, naming a health care proxy can be a simpler decision than making a difficult health care decision.
Doctors may also be more likely to conclude the person has capacity if the choice they are making is consistent with other choices or values the person has expressed over time in the past, and otherwise isn’t a “worrisome” choice. So if an older person is picking a POA, are they choosing a family member who has been involved for a long time or are they choosing a new companion who just recently arrived on the scene.
Many health providers will set a higher bar for determining the person has capacity to choose someone that seems surprising to the clinician or family. They may also set a higher bar regarding determining capacity if anyone has raised concerns about undue influence or someone “having an agenda.”
Simply, my situation came about regarding a healthcare decision for my only sibling in emergency then
my having to ok a very serious brain operation where he never recovered only to be in a vegetative state
where no doctor or nurse would give me some information being an only heir…frankly the professionals
were all to blame as my brother was in a doctors care ten days earlier as well as having a persistent headache for 16 months only to succumb with 9 large brain absesses…..so point being here i was asked
or vaguely told to take brotheroff life support……..this was far trickier and maddening then whoops no healthcare proxy..i dont even have one……he was 69 years old and taking care of his 97 year old father
so what is the LAW here no talking but yes approving a life threatening operation where brother was at the end in emergency…….too far gone…..so is it the doctor who sent him home ten days earlier that took
the capsules in his brain to form………….how about that delemma……
Hi Elaine and I am so sorry to hear about your brother. I didn’t follow every part of it, but I gather that you were placed in a difficult position of having to make serious decisions about his care when it was not clear if you had the power to do so, or even if there was really much choice of what course to take. Your story really emphasizes the importance of planning ahead and assigning a healthcare proxy or power of attorney, even before what we consider old age.
I also got the sense that you had difficulty obtaining information, and some of that may have been related to privacy legislation. Here’s a link to an excellent article: 10 things you need to know about HIPAA.