​Help me get my mother the help she needs
May 3, 2019 11:26 PM   Subscribe

​My mother is a resident of Illinois. She is a widow and she is suffering from some form of dementia/alzheimers. My sibling is scheming and taking control behind everyone's back. Should I be concerned, and what course of action should I take? Primary goal: help my mother. (Lots of specifics inside)

​My mother is mid 80s. My father died a bit over a year ago. Even before his death my father made comments about how my mother's memory was going. It has been getting increasingly worse: She gets lost on streets she's driven for 60 years, she calls me and my siblings repeatedly to ask the same question again and again and again (my sister reported once my mother calling literally 30 times to ask what time an appointment was the next day), she will have the same conversation two or three times in a row in person.​ She has done this to medical offices as well, to the point where the offices call my sister or me to convey information my mother is not absorbing. Only once did a doctor (her cardiologist) seem to really notice the repeated questions asked endlessly, but he seemed more annoyed by having to repeat himself than concerned for her cognition. ​

More than just her memory, she is inventing/hallucinating events. She once called and told me she had been robbed, that everything was stolen from her garage. I went over and not an item was missing. She also hallucinated that a friend of mine replaced her sump pump--there was no sump pump replaced (though a plumber friend did plunge her toilet that she said was leaking...it wasn't). She also claims my eldest sister steals from her, but random items like golf clubs or a used commode. Many times these items are found still in the house. These types of imaginings are happening more and more often.

Her hygiene is slipping. Often she is wearing stained clothing, has unkempt hair, and sometimes even a foul odor from her. Her large, 2-story, 6 bedroom house (in which she now lives alone) is only kept up by a weekly housekeeper. My mother cannot do stairs without getting winded, so the hygiene may be a memory issue, or it may be she cannot climb the stairs in the morning to shower or bathe (there is no shower/bath on the first floor). This could also be depression, but I cannot diagnose.

My mother is not eating well. At home she seems to only eat crackers, cheese, and ice cream. She does go out regularly (5 times a week at minimum) and eats well there. Food we have taken to her house rots in the refrigerator. Yet my mother cannot make any decisions such as "This food is covered in mold, it should be thrown away. This food is expired, it should be thrown away." When I go to clean her refrigerator she stands there and protests the "good food" being pitched when all of it is expired, moldy, or rotten. (That said, my mother is not losing weight due to her lack of appetite or proper eating.)

Again, some of this may be depression related, but she won't see anyone about it. ​

To top all this off, she has Stage 4 breast cancer that has metastasized in her lungs.​ She usually does not remember that her cancer is Stage 4 and that there's more than one tumor. She can't recall what medicines she is supposed to take. Despite it being written down for her repeatedly, she can't remember who her doctors are or what they are caring for. ​ ​ She does not always remember to take her medication. ​She writes everything in a journal to show she has taken it, but at the end of the month 1/3 or more of her pills are remaining when she should have run out. She refuses to admit she isn't taking her medicine as prescribed, though the evidence is right there in her pills. She also cannot remember refills; numerous times she's had me take her to the pharmacy to pick up a prescription that was either picked up weeks ago or never ordered in the first place.​​

She has extreme shortness of breath, but no pulmonologist, cardiologist, or oncologist can determine a reason (the oncologist says the main tumor is too small to account for the shortness of breath). She can walk on a level plane with no issue, but the slightest incline results in gasping and wheezing...but her blood oxygen level never drops below 97%. With every test exhausted, I suspect this shortness of breath may be panic-attack related. (The pulmonologist, specifically, felt like these symptoms were fictitious as the blood oxygen level was so good).

There also seems to be depression that has set in since my father died. My mother does nothing most of the day but sit in a chair. She has never had many hobbies, she doesn't read, watch TV, or listen to music. Once a day, if weather and her breathing allows, she will walk her dog around the neighborhood. Sometimes people will come and take her to events. But mostly she sits at home doing literally nothing but obsessing over appointments she cannot remember.

All of this is quite concerning to me. I have raised these topics with her but she writes it off as "old age" and she simply denies some of it. I have suggested she see a doctor about her memory issues and she gets angry at the thought.

I have three sisters. My eldest sister, against my mother's wishes, contacted my mother's primary care physician to check my mom for alzheimer's. She was very upset about this and barely speaks to that daughter now. Unfortunately, she passed the MMSE and Mini-Cog tests given by the doctor (which my mother crows is proof she is NOT mentally impaired).

Now enter my middle sister. Without telling any of us siblings she took my mother to the lawyer and my mother signed over both financial and medical POA solely to that sister. When asked, my mother claimed to have no memory of signing those papers.

For years my middle sister's husband has gone to "help" my mother around the house with minor repairs, gardening, or holiday decorating. He also takes care of her finances (balancing checkbook, telling her what checks to write for bills, etc) as my mother cannot handle this mentally. For this, my middle sister is paid between $30,000 and $50,000 per year. This is for 2-3 hours' work per week.

My mother is either not told or can't remember her own finances. She claims to only have $200,000 to last the rest of her life. Truth is, she is a multi-millionaire with a six figure annual income from dividends and IRA minimum distributions.​ Due to her own view of her finances she has refused several chemotherapy medications recommended by doctors due to the cost.​

Given all of the above, I wonder if my middle sister is manipulating my mother for financial profit. More, my middle sister has said she will not take any action regarding my mother's memory issues (that she readily admits are frightening and impairing), even though she is sole medical POA. She says she wants to "wait for a crisis" rather than upset my mother by pushing the issue that she is unsafe alone in the house.

I am considering calling the Illinois Protection & Advocacy office to get involved, however I am of the mindset that the government rarely helps anything, only makes it worse. More, I can't decide if what my middle sister is doing classifies as elder abuse, though the IPAO web site seems to put similar actions in the definition.

So I am stymied. What do I do in this case?
posted by anonymous to Health & Fitness (8 answers total) 3 users marked this as a favorite
I'm so sorry for your mom... and for you. Elder care can be a nightmare. My mom is similarly affected. My solution was to have her move into my house, hire some part-time caregivers, and take her to a 4 hour day care/social group five days a week. But my situation may be different from yours.

From your description of your mom's behavior (forgetting meds, bad personal hygiene, low activity level,) it sounds like she's a candidate for full time care. Adding on Stage 4 cancer... she Really needs full time care! While it's possible to get this kind of care in her home, and familiar surroundings are best, it sounds like she might be a good candidate for a nursing home. She'd get the care she needs, and the additional social interaction.

And I have to vote yes to at least inquiring with the Illinois Protection & Advocacy office. Your'e sisters husband seems to be collecting $300 an hour, which probably isn't right.

I wish I could tell you it gets better, but it doesn't. But there is some joy mixed in with the frustration. I wish you well.
posted by Marky at 2:01 AM on May 4, 2019 [5 favorites]

Sounds like she would also be eligible for hospice, which could mean she stays at home but has visiting nurses, once or twice a week. I agree, full time care would be ideal, if she would accept it.

At the very least, she should have a home health aide to check on her and make sure she is bathing and eating properly.

My late FIL had heart failure, and we moved to his town, with the intention of caring for him, but it took 3-4 months and several ER visits before he agreed to move in with us (even tho' he had previously agreed to this arrangement, with my husband's sibling being in agreement as well). We found a house to rent with a ground-floor bedroom and bathroom right around the corner from that.

Is there any way you can ask the sibling with POA why she did what she did without telling the rest of you? It could be something as simple as, "it's easier, we were just planning ahead in case there is a future crisis," to something else. If you get pushback, consult an attorney who specializes in elder care and estate law -- there are also things called sibling caretaker or family caretaker agreements, which lays out who is caring for mom and what compensation, if any, they will receive, and it's all written down (is your sister claiming the money mom gives her on her taxes? As it is in exchange for work, don't want her to get in trouble). How are you aware of how much your mom is giving them for the help? How transparent is your sister with you? Is she the one nearby and you are far away? It's hard to walk in someone's shoes doing elder care unless you've been there, if this paid situation has been going on for years, your Mom approved of it before she got dementia? It might be easier to let this slide, unless you think something nefarious is going on, but do consult a lawyer if you want advice on this.

My FIL was extremely stubborn, and kept driving up until one day he realized he couldn't. He didn't want help, and he did also have depression. He perked up when the hospice nurses came. His shoes were worn, and he didn't want new ones because he said what was the point? He was dying (we got him new shoes, btw). It was a fine line between pushing him to accept help and assaulting his dignity. That may be the root of your sister wanting to wait for a crisis, your mom may keep saying no to things (and if she's been deemed competent, no one can force her).

My FIL did eventually move in with us, and we had medical POA and my husband's other sibling had financial POA and didn't use it until near the end, to pay bills and such. The person who is physically closest should have medical POA, but consulting a lawyer about a caregiving agreement and such might be wise, if you have doubts. I'd do that and then if you feel you need to, contact the advocacy office.

At the very least, consult with your sister about her plans on what exactly constitutes a crisis in her mind, and what she will do (put mom in a nursing home, move in with her and care for her full time, hire aides to care for her at home, etc.). Also does your mother have a medical advanced directive? My FIL was adamant about his DNR order, he did not want extreme measures taken and made sure we all knew about it.

Good luck, it's very stressful, especially dealing with siblings when you aren't all on the same page, but you need to sit down and talk to your sister and ask about future plans and raise your concerns about mom not eating and bathing and being left alone.
posted by Marie Mon Dieu at 3:23 AM on May 4, 2019 [3 favorites]

My family split into two over an estate with one side taking advantage of the probate process to take a lot of money out. It took a lawsuit and a long time with lawyers to get things resolved, and there are protection orders still in place.

If we had been up front and had the hard financial and health talks when the parents involved were alive, it would have been A LOT easier. Like six figures and years of time easier. And maybe some kids would still have cousins.

I would not be soft-pedalling here. Talk to your eldest sister, get on the same page and talk together to a lawyer in your mother's state to find out exactly what you can do and get it done.

Have several plans: what if your middle sister is co-operative but overwhelmed? What if she's exploitative? What if it's her husband who is scheming? What if your older sister agrees about the care but wants the siblings to get along more than prioritising your mother's care?

It's hard to come to terms with a sibling exploiting parents. Find out if they are using the money for something - are they putting the money into childcare or helping to pay for medical costs or something else involving your mother? There could be plenty of reasonable explanations and it's worth asking why if they've been doing the lion's share of parental support.

A lawyer with experience in elder abuse cases is really helpful because they don't have the emotional entanglement so they can see your situation more clearly and give an objective assessment and action plan. So worth it.
posted by dorothyisunderwood at 3:31 AM on May 4, 2019 [2 favorites]

So in this case, Adult protective services would be a good place to start provided you want the following 1)an assessment if you're sister is stealing her fiances.


If it is determined that she is, the current POA will be revoked. Another will be put in its place (another sibling or the state). Your sister may go to jail. (This is honestly was less likely, because APS has very little teeth, but they can do things like change the poa easier).

The only way you are going to know what her doctors are saying is to go to the appointments.

Because this level of cognitive decline is very very noticable. Your reports matter though. Also it means that her reports are unreliable and you already know that.

Sitting still and declines in eating can be related to end stage dementia as well. They get this stare that is basically just being comatose.

It's incredibly hard. You may able to report concerns for medical neglect on terms of your sister, especially if 24 hour care been recommended and she hasn't followed through, and if medication regimens have been declined to save her money, things like that. Leaving someone who has that level of memory impairment alone can be dangerous. They can burn their property down, get lost, overdose on accident, forget to eat or drink, etc etc etc.

There are lots of services are available, there are senior companions, home health aides, hospice services as mentioned before . Meals on wheels.

Please call and see what can be done.

The senior helpline (chicagoland) can also connect you to nonprofits who help navigate these complex issues, So please reach out to find out who in your area can guide you.
posted by AlexiaSky at 3:38 AM on May 4, 2019 [3 favorites]

This page will help you find a qualified lawyer to assist with the legal side of things, including conservatorship and financial exploitation issues.
posted by yclipse at 4:43 AM on May 4, 2019 [1 favorite]

Lots of good advice upthread, but one more thought: do you only have your mom's report on the $30-50,000? And if so, was that report made before the dementia set in?
posted by kate4914 at 6:08 AM on May 4, 2019 [3 favorites]

See about getting her consent for you to hire a home health aide from an extremely reputable agency ASAP. if she will discuss it, make sure you tell her she'll get to interview the people and pick ones she likes. If you can afford it, having someone there a few hours a week who reports to you and not to your sister will be useful. but mostly, it is vital for your mother. there are people whose rates are lower than nurses, who have limitations on what medical assistance they can legally offer but who can do things like keep an appointment calendar, cook, clean, set timers, guide her to bed, help her get dressed, keep a medication log. an outside person she gets along with and doesn't fight with like her own children would be a great help.

if she has not been declared incompetent, having a health care proxy doesn't mean she isn't in charge of her decisions anymore. it only means that if she's unconscious or unresponsive, nobody but that one sister can speak for her and nobody but that one sister can go behind her back and get information from her doctors. as long as she's walking and talking, you have all the ability you ever did to drive her to appointments, convince her to do things, trick her into taking care of herself. If she is nowhere near broke, possible -- speculative -- financial exploitation is at the very bottom of the priority list. that may be a crime, but this is a crisis. You have information from her oncologist and about her medications, so she apparently doesn't mind sharing information with you. this is really good and you can build on it.

if your mother has no memory of signing previous paperwork, what stands in the way of her now designating you her health care proxy? when I was in this situation, the medical and financial powers were split between siblings and the medical part involved no lawyers; the hospital provided the paperwork. Find out whether your sister's medical POA has to be formally revoked or whether the simple act of designating someone else at a later date will override it. And make sure your name is on the list of people to call in an emergency - you can be the second person the hospital tries even if your sister's the first.
posted by queenofbithynia at 7:35 AM on May 4, 2019 [1 favorite]

Call a lawyer immediately. Don't avoid it. Don't delay it. Don't be shy. What you're describing is serious business. To find a lawyer, Google elder law or estate lawyer in the state where your mother resides (the only laws that matter). Because first-time calls to lawyers are typically free, call two or three of them. Give each a summary of your concerns, and ask about your best next steps, particularly in regard to your other siblings.

24-7 nursing is NOT the same thing as Hospice. Hospice is for people who are dying. Often it is called in too early these days. I'm not the only one who thinks this is a problem. See, for example, this Washington Post article.

Don't bother calling Protective Services.
Many, many people will tell you to call Protective Services. They are not worth starting with. Their mandate nationwide is addressing the obvious short-term distress of, primarily, elders who are obviously being abused. By obvious abuse, I mean something as obvious as a black eye. Financial abuse is a growing phenomenon, but even if it is obvious to you, it likely won't be to the state. Protective Services does not investigate, and will not touch private financial documents. They also, more importantly, won't second guess the services of a lawyer who helped create POAs (which might affect financial documents), as any questioning of the lawyer calls into question the lawyer's ethics, which makes the state liable (read: suit-worthy).

Once you've got a lawyer on your side, and some beginnings of a plan/meeting/common approach for the siblings, you might consider consulting with a Case Manager specializing in elder issues (read: social worker specializing in big picture issues), who can help you come up with a plan in light of your mother's condition, finances, the many sibling opinions and so on. But that's jumping ahead. For now, start with an elderlaw lawyer! And note if your sibling does have medical POA, that sibling can overrule any nurse you bring in. So don't start with nurses; start with a lawyer!
posted by Puppetry for Privacy at 10:19 PM on May 5, 2019 [1 favorite]

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