caring for an estranged grandmother with rapidly progressing alzheimers, no POA and....

Galathea

Caring for an estranged grandmother with rapidly progressing Alzheimer’s, no POA, and an immediate need for 24/7 supervision

I’m reaching out because my family has been thrown into a rapidly escalating situation, and we need advice from people familiar with the gap between realizing someone needs 24/7 care and actually obtaining legal authority, services, or placement.

My maternal grandmother has been estranged from our entire family by choice for more than 18 years, although she now says we abandoned her. A few months ago, my mother, her brother, his wife, and I learned something was seriously wrong after several ER visits and contact from the police. The initial diagnosis was possible dementia; a few weeks ago, it was upgraded to Alzheimer’s.

She has seen a neurologist, and tomorrow we have a follow-up to discuss further testing and hopefully her stage and prognosis.

Because of the estrangement, we did not witness a gradual decline or have time to prepare. We reentered her life after the situation had already become dangerous. We lack a complete medical history, do not know exactly which doctors she saw, and are reconstructing nearly two decades of medical and financial affairs while trying to keep her safe. The PCP assigned by her insurance apparently had not seen her in 12 years.

She is highly intelligent, accomplished, and fiercely independent. She handled her finances meticulously and likely compensated for or concealed her decline for a long time. She remains physically mobile and conversational, so she can appear far more independent than she is.

Functionally, she cannot safely be left alone. She:

• Leaves stove burners and the oven on.
• Puts dirty dishes away as clean.
• Forgets or misplaces her medication.
• Forgets to feed or walk her dog and sometimes leaves the dog outside.
• Can no longer manage her finances despite previously pristine credit.
• Nearly had her new car repossessed.
• Has had her driver’s license revoked.
• Cannot consistently understand or remember her condition.
• Becomes verbally combative and increasingly difficult to redirect.

We are also scrambling to locate documents needed to file her 2025 taxes. She apparently has a will, but that has not been our immediate priority because she is alive and currently unsafe. As far as we know, she has no power of attorney, healthcare directive, executor, or other arrangement authorizing anyone to manage her medical, financial, or living decisions.

It is clear to the family that she no longer has the capacity to make those decisions independently, but we currently have no formal legal authority.

Two home-health workers visit during portions of the week, providing some respite, but she needs continuous supervision. We know there may be options involving additional services, court proceedings, guardianship/conservatorship, or memory care. The problem is that these processes may take months, while her need for supervision exists now.

Because no one else can provide round-the-clock supervision, I am temporarily living in her home with my children. This is not an ideal arrangement, but I am the only available person. Without someone here, she was headed toward an immediate crisis or institutionalization before we could understand what was happening.

She initially asked for someone to stay and thought my children could help. Sometimes she remembers this and is relieved and grateful. Other times, she forgets why we are here, becomes angry that we are “cramping her style,” or feels overstimulated by the children. This is a temporary emergency arrangement, not something we consider a perfect long-term solution.

Her personality also complicates things. Even before Alzheimer’s, she was controlling, highly particular, nitpicky, and argumentative. Those traits are now mixed with confusion, fear, memory loss, and poor insight. She does not consistently believe she needs help and cannot remember the incidents demonstrating why she does.

Last night, she became physically aggressive. She came toward me with both fists and threatened me verbally. I raised my voice sharply to stop her and stepped backward. I told her I was there to help, that she had asked me to be there for moments like this, and that she needed to back up and could not hit me.

Her lip began to quiver, so I told her to lie down and that I would check on her. A few minutes later, she was muttering to herself. Later, she fell asleep, although she was up and down throughout the night. This morning, she remembered none of it.

I do not hold the incident against her. I understand that Alzheimer’s is affecting her memory, judgment, perception, and emotions. But understanding the cause does not make the situation safe. I have to consider her safety, my safety, my children, and her dog.

I am doing my best, but I am not a trained dementia caregiver or an entire 24/7 memory-care staff. Our family is pursuing help, but these systems require documentation, court processes, money, available caregivers, or placement. We need a safe bridge while that happens.

I would especially appreciate advice about:

1. What did you do when your relative already required 24/7 supervision but services, placement, and legal authority were still months away?
2. Has anyone obtained emergency or temporary guardianship/conservatorship without an existing POA? What demonstrated the urgency?
3. What should we ask the neurologist to document tomorrow regarding her incapacity and need for supervision?
4. How do you safely respond to physical aggression when the person forgets the incident afterward?
5. When did you determine that home was no longer safe, even temporarily?
6. How can I protect my children and reduce overstimulation while I remain the only available caregiver?
7. What practical steps can secure the stove, medications, finances, and other hazards without provoking more conflict?
8. How did you handle medical information, taxes, banking, and bills before receiving formal legal authority?
9. What emergency, respite, social-work, or placement resources are families not always told about?
10. Is this degree of impairment and aggression common in someone who remains physically mobile, intelligent, and conversational?

We are not trying to seize control of her life or punish her for having Alzheimer’s. We are estranged relatives who stepped back into an emergency because leaving her alone was no longer safe. We want to preserve her dignity and independence without denying that she can no longer reliably protect herself.

I welcome practical advice, including difficult truths. We need to know what can realistically be done now, not only what an ideal care plan might look like months from now.

towhee

Welcome to the forums.

The name for the lack of insight into her condition is anosognosia. It is unfortunately common in dementia and does make things difficult. There is a channel on YouTube called dementia careblazers by geriatric psychologist Natalie Edmonds. Search on that channel for the topic "how to get person to accept help" . There should be several short videos on the topic that will be extremely useful.

The doctors appear to be communicating with family members. To keep that channel open you want to communicate symptoms and problems outside of your grandmothers presence, usually in writing, before the visit and do not contradict Gma in front of doctor. Do let doctor know she has been aggressive. Doctors usually use a 3 level staging system, mild, moderate, severe based on their tests and the information you give them on a person's functional abilities. Family caregivers often use a more detailed staging system based on abilities. Google "DBAT dementia Tam Cummings" Sorry, I can't do links with my phone on this site.

Question 1 Family usually steps in. If no family then Adult protective services if you are lucky.

Question 2 Yes absolutely people get emergency guardianship without a prior POA. You need a lawyer experienced in guardianship, often this is someone who works in elder law. It is my understanding that emergency cases can move quickly. I do not know enough for details but having a person be a danger to themselves or others has been mentioned on this site before. Those emergency room trips, leaving the stove on, and threatening you would probably qualify. The fact that you cannot stay in a situation that is not safe for your children and would be leaving Gma without supervision might also be germane. I strongly suggest talking to experienced lawyer.

I would not ask the doctor to document anything, you do not want to be seen as trying to influence. Just provide that list of symptoms you gave here and any others, but not more than half a page, and do let doctor know she has been aggressive and you are worried and want advice/help. If you have access to a patient portal you can communicate that way.

Others will be by to answer your questions as well, but as for question 10, yes, it is common. They could be talking to a friend on the phone and seem perfectly normal and 15 minutes later blow up at nothing at all that you can figure out. My Lo once blew up because I moved some empty plastic grocery bags from a chair to the closet.

Good luck with doctor visit.

SusanB-dil

hello and welcome -

totally agreeing with towhee. and yes, a LO can 'act' fairly normal one minute, and 5 minutes later be totally off the wall. Also, if HIPAA medical access is not in place yet, you can still let her doc know what is happening, they will just not be able to reply back.

The scale that most of us on here use is 7-stage: https://us.v-cdn.net/6037576/uploads/B0XGDF5TALMA/dbat-287-29-281-29.pdf

So sorry you are dealing with 'this'. After estrangement, she is blessed to have her family step-up.

H1235

Welcome. What a difficult situation. If you are in a situation where you are afraid she may become physically violent, I would call 911. Explain the situation to the police. At the hospital explain your concerns. Stress that she is not safe on her own. Tell them you can not bring her home and refuse to stay with her ( I know that sounds harsh, but the hospital won’t be motivated to get her in a safe environment as long as they can get you to do it). This will push everything onto to hospital. I believe there are laws about discharging a patient to an unsafe environment. Ask to talk with a social worker. You might try asking the doctor for a letter of incompetence. This might speed the guardianship along. I will add a few links that might be helpful. I think I would just pay bills the best you can without having any real authority. This may not be entirely legal, but if you stick to basics and document everything, it doesn’t seem like you would run into problems. Obviously you should not try to move around large sums of money or make big purchases. Are there any family members that will question this or cause problems? Save all your receipts and try to be as organized as possible. Anger is unfortunately not uncommon with dementia. I would explain what’s happening to the doctor (a patient portal works great or a note when you check her in). Ask about medication to help. It can make a big difference. We have a saying here, never try to reason with a person with dementia, it usually leads to anger and an argument. To avoid upsetting her- do things that need to be done without consulting her or even telling her, if it doesn’t matter just agree with her, a fib may make some things easier for her, avoid correcting her and avoid any topic you have noticed to be a source of upset and anger at all costs ( yes it’s like walking on eggshells). I hope something here helps.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

Maru

Yours and your children's' safety is of primary importance. If you and they are not safe, you must leave. After that, get an attorney to give someone in the family guardianship. I would take a serious look at the responsibilities involved in a guardianship. Considering the sad family dynamics, would anyone want to take those responsibilities on?

alz_daughter

The aggression is something we dealt with from my mom a lot. The way you talk to them, what you do/don't do makes a big difference. You can't reason with dementia so correcting them will only upset them more. Medication helped us a lot. It helps with the aggression, and will make them lest restless, makes them sleep more, etc.

You can get in touch with your local senior services office, that's how we got connected with a social worker that keeps in touch with us and is able to answer lots of questions. Also, look into your local senior blue book. It will have legal contacts for you to pursue guardianship or conservatorship. Depending on where you live, you may or may not need a lawyer to file emergency guardianship/conservatorship with the court. You'll need a letter either way from the doctor. My county required the letter to specifically say they recommend she be placed in guardianship/conservatorship, but a lawyer or your county will have a template outlining what that needs to say.

In the meantime, look into getting an airtag or satellite tracker for her. We put my mom's in a necklace, but some people will put it in the sole of a shoe or sewed into their clothes. Get baby locks for stove, oven, doors, knife drawers, etc. Even if they aren't 100% effective it's better than nothing. Get a doorbell chime for the doors when they open, you probably aren't far off from her wandering if that's not already a problem. With the airtags, we could let my mom go on a walk to cool off while still knowing where she was.

Victoriaredux

What a difficult situation. Your children and all your safety is the number one concern.

While it is humane to be concerned she didn't put -well- anything into the family for 18+ years. So why are you all uprooting your life for her now ? These years with your children are important and sleep deprivation is very bad for kids .

You can try reporting her to Adult protective service -say you have to protect your children FIRST and can't give up their safety and your life. They can step in if they feel she is at risk— but that is a pretty high bar of risk- think homeless and not verbally capable. Most APS s are overwhelmed. Don't let them guilt you in not pursuing getting her protected.

They may do an ex parte emergency guardianship and then if she has assets hire a private fiduciary /guardian to manage her — that is very expensive- so if inheritance is a factor -well between the APS and the private guardian's lawyers don't count on much left. After an ex parte motion there is a regular hearing and she would have her own lawyer. [I'm not a lawyer just experienced the wonders of probate court ].

But your other option is to spend maybe 20 years dealing with her and even if placed have ongoing supervision duties .

Talking to an elder law attorney is what I would do - two issues : do they think you have enough to get her conserved now or is she so verbally skilled it would be difficult. If you or your family decide to walk away how can you without risking elder abuse charges.

Finally, you mention her independence : "We are not trying to seize control of her life ... We want to
preserve her dignity and independence " Well, actually her safety does require that someone does take protective control of her life; she can't be left alone.

The issue is who can and wants to devote years to her situation. And at what cost. If someone in your family does want to be named guardian they , if funds allow, can hire a geriatric case manager to handle the day to day or a private fiduciary or conservator but someone still needs to oversee them .

It's very hard to see a person in a family in crisis but creating another family in crisis isn't the answer. Esp. since the disease course can last for decades .

Maru

Victoriaredux, you gave really good advice. I learn so much from this group.

JulietteBee

@Victoriaredux, exceptionally good advice. I found it to be insightful and thoughtfully expressed.💯

Daisy4U

Unfortunately, as already stated, there are no easy answers to this tough situation. As mentioned, the care journey could last decades, especially if your LO is still conversationally high functioning. Protecting yourself and your children is paramount. Medication can make a big difference, but this can also come with other potential side effects, so she will still need support/monitoring while the underlying disease continues progressing. Documenting what is happening for doctors, medical and support teams, lawyers etc is vital, especially during this in between stage, until your family can arrange the appropriate legal authorizations. I found the following tool helpful for our family in consolidating all the information that needs to be collected, tracked and shared, both in the short term and when the POA and POC are in place to arrange and manage future, ongoing services. https://cosyseniorcaretracker.com/

Wishing you strength for the journey.