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My 78 y/o mother with mild cognitive disorder (likely early-stage Alzheimer’s according to neurologist but refuses spinal tap confirmation) is the sole caregiver of my incontinent 81 y/o father who has no health issues other than Type 2 Diabetes, malnutrition and severe muscular atrophy. He “perks up” when evaluated by a healthcare worker and can suddenly use his walker to get to the restroom when someone visits but otherwise wets and soils himself day and night. My mother doesn’t want strangers in her house and considers his care her responsibility. A constant refrain is, “It is what it is.” My question regards my mother’s irresponsible and erratic spending but to give context, she’s used “retail therapy” since I can remember and says she only buys what they need, not diamonds and gold, etc. I track their deposits and withdrawals through the bank app on my phone, but we haven’t yet limited her spending other than strongly suggesting and reminding her of low balances etc. I transfer money when she writes a check to protect overdraft fees and she’s starting to duplicate payments for invoices. I listed their monthly income vs bills (excluding food, Rx) and the difference was $4. (!!!!) She has around $11,000 left from her mother’s inheritance and the house is mortgaged with $180,000 left and a value maybe of $400,000 with today’s market but it’s old and crumbling (est 1976).



My two sisters and I established a Trust so we can protect what they have left to go towards care. She’s cut down from spending $3,000 a month to around $1,000 and still thinks she’s making great sacrifices. She’s always been sneaky with my dad (hiding shopping bags, for ex), and claims that she’s really trying but habits are hard to break and everything is so different now. Brief backstory: my dad is a life insurance salesman who invested and lost millions in the 80s. He even drove a Rolls-Royce and owned businesses. The bottom dropped in 1989 as it did for many then but his get-rich-quick mindset remained firm. They lived off credit cards all of the 90s and refinanced their house many times over. He thought he was investing in a grant last year (What’s App/FB scam) and bought close to $50,000 worth of gift cards over six months. I found the receipts in a shoebox and on his phone when he was in the hospital. Thanks (no thanks) to modern medicine, he recovered from near organ failure to return home and deny involvement in the money scheme. He hasn’t been diagnosed with dementia but plays the fool when it suits him; it would be easier almost if he were. I apologize for being all over the place, as you can probably imagine, I’m in a constant state of panic when my mom calls or texts. I blocked my dad’s number because he would call at 1am and demand I come over and fix his TV. He is hateful and I’m inaccessible to him since he told me he wished he had a son instead of 3 daughters. I’m the youngest (the baby at 47 :) and thankfully in therapy, but as far as I’m concerned, he has two daughters. I’ll help my mom as much as she needs. We all live near each other and communicate fairly well, so that’s a huge blessing.



Ugh, I didn’t mean to write a novella. If anyone is still reading and has advice about handling finances for stubborn, strong-willed parents who sabotage themselves and refuse help from in-home caregivers, and whose long-term health plan includes his wife and three daughters taking care of him. My mom blames him for losing their money while frivolously spending what they have left, and his Social Security benefits put him above the range of state care for a nursing home (around $2,800 a month).



I’ve vented all this and not entirely sure if I asked a specific question, but I’ll happily accept any and all bits of advice you might offer. Just please don’t say it is what it is…

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Repeat this to yourselves and your sisters as many times as necessary --

YOU CAN'T SAVE PEOPLE FROM THEMSELVES.

If your parents are still competent enough to handle their finances (albeit irresponsibly), then cut them loose and let them live their lives as badly as they choose. Be prepared to pick up the pieces when the inevitable crash comes, but don't put any of your own finances toward their care. Their final years are going to be far more low-budget than it is now, but that's the choice they've made.

I don't suggest this lightly, so I'd also sit them down, warn them that they have X months/years of funds left to live on before cutting them loose.
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KatieR27: Perhaps you should retain an elder law attorney.
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The purpose of this report is to gather new evidence about the issues that people with dementia and carers face when managing their money. It also explores what they consider to be financial abuse. The aim is to use this evidence to raise awareness among the public, and those working with people with dementia, about the issues raised by money management and financial abuse in the context of dementia. The report makes recommendations for helping people with dementia and carers to manage their money as well as possible, for as long as possible, while minimising the risks of financial abuse
Matilda
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Sendhelp Feb 2023
What report?
Is this a 'test case" from KatieR27?

What are you talking about Matilda?
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Hello Katie,
You and your sisters have established a trust to protect what is left of your parent's finances so that they will have money towards care.

However, you say: "but we haven’t yet limited her spending other than strongly suggesting and reminding her of low balances etc."

I would like to suggest you hire a professional to manage their money and remove their access to funds available to scammers and Mom's over-spending.

The care required by your parents has reached beyond what you and your sisters can provide. This is not from lack of trying, and is not from any fault of your own.

While it is still possible, moving them (together) into an independent living/senior housing, or assisted living may improve their quality of life. Especially your Mom's need for socialization to replace her over-spending.

There are other options for their care, but the time is now to set this up.
My concern is that waiting may require their separation into different facilities, or inability to keep one in the home.

It appears that your Mother as caregiver for Dad is not meeting his most basic healthcare needs.

Is there some denial going on about his needs? I wonder, when you say:
"my incontinent 81 y/o father who has no health issues other than Type 2 Diabetes, malnutrition and severe muscular atrophy...". (also, through no fault of your own, and beyond what family can provide?)

Sounds like your Dad may be ready for a nursing home now.
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After answering this I see I already did answer it. But am wondering now if you have seen an attorney about all of this. Because, YIKES.. It's complicated!
Forgive me, but I am so confused by this. I don't understand how, or under what authority you are managing their finances. You mention there are limits on what your Mom can spend due to a trust created by your sister and yourself. I don't get how that is done. And apparently, from what you say about 50,000 (!!!!) going missing, your father has NO LIMITS? So he isn't a part of this protecting money you are doing, I don't know how.
I don't know who is POA here, and if you are using POA now, and under what authority if your parents are neither one diagnosed with dementia, and incompetency rulings aren't done. The truth in the United states is that is someone isn't adjudged incompetent they have every right to spend every dollar they have no matter they wish to flush it down the hopper or not. So I don't understand the partial protections you have already set in place without guardianship, conservatorship or POA.
At one point you mention that they have a home worth perhaps 200,000 after mortgage paid and a total of 11,000? If this is the case there is precious little to protect at this point, and they are very close to being able to apply for medicaid if placement is needed and it sounds as though it is needed now. They can keep the home, tho medicaid will do clawback on that home when they pass. There quite honestly isn't enough left here to provide them, together, more than a year of two of placement.
I am really sorry. Sounds they squandered all their money and it is a bit late to worry about that now. I could be wrong, sooooooo........
I can only suggest you take this guestion to a Trust and Estate or an Elder Law attorney, likely the latter, for advice on what is being done, and what you would like to do.
Push will come to shove when your parents end in hospital. If there is currently no POA involved be ready to ask Social Services to make one of you emergency temporary guardian and to ask for assessment of mental condition.
I sure do wish you the best.
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Please call Adult Protective Services to evaluate your parents for appropriate care and get the Medicaid forms filled out even if you're sure they don't qualify. Money can be spent on funerals and the attorney (there's probably a list for justifiable expenditures). You will need to video behaviors that are self-sabotaging and the reasons why your father should be placed in a nursing home. Try to abstain from caring for your dad for a week or two and then video what you see when you come in the door: it sounds like it's time to let the professionals take over so that you do not sacrifice your life to senior issues.

Perhaps replace the phone with an old fashioned "dumb phone." Get Computer Geek to put child protection programs to block scammers.
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This is a very common situation. They don’t make plans for when they are too old or infirm to care for themselves. Parents often just assume that their kids will be their caretakers and either move in with them “when the time comes”, or live in their kid’s homes till the end. They don’t realize, or maybe can’t accept, how much work it is to care for someone 24/7. The financial and emotional toll can just be too much. It is seriously disruptive to your life. We are not all cut out to be caregivers.

If they run out of money they will be on Medicaid and you can place them in a facility that accepts it. So maybe start doing that research now. It sounds like they will take a loss on the house when it sells. I would meet with an elder care attorney using their funds to pay for it so you can figure out next steps. Do not use your own money to prop them up. I mean, don’t let them starve or live in the dark, but beyond that they need to be told they are out of money and their only option is to be moved into a place that will take care of them.
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When my mom was still in the MCI stage of her journey of cognitive decline and was living with me and hubby, I took over her bill paying. She would stress out about it too much and had trouble writing the checks. I like your idea of you paying the bills and giving her/them an "allowance". I found with things like this I just basically nicely told my mom that it was too much stress for her AND me, so I was just going to do it from now on to make it easier for BOTH of us. Maybe your mom will go for that, maybe not.

Sounds like your parents are going to run out of cash soon. I think it's time to convince them to sell. Tell them the market is good and it's time because once that 11k is gone, they will not have enough to pay the bills and eat. I would then have them start living in either independent living or probably better to go for assisted living. They'll have meals, housekeeping, laundry service, etc. Also say you can no longer help take care of their house, which I am pretty sure you and/or sisters are doing.

Make sure that you do not spend ANY of your money on propping them up into being "independent". Also, as far as not wanting any helpers - well, too bad for them. Elder care is NOT easy and it is so easy to burn out and need help before our stress level goes through the roof. Take care of yourself! Not just them.
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KatieR27 Feb 2023
Ah, your reply feels like a hug; thank you. I haven’t spent my own money except to give gifts (puzzles, birdseed, the things I’ve begged her to stop buying for herself). My middle sister and her husband have spent quite a bit patching up the house—putting bandaids on the sinking submarine. They have a spare room in a large house that is a safety net (last resort) reserved for my mom when my dad passes, but I’m telling you, the man may outlive us all. I’m glad to share his genes but I fear the rest. I love “too bad for them,” as I say that to my sisters when it comes to making hard decisions. They cater to him, especially. My oldest sister actually called me Nurse Ratched when I balked at her giving him a milkshake when he hadn’t eaten his meal. (He’s diabetic and refuses to make good choices.) I’m glad my responsibility is designated to the financial side because I can be black & white. Yes/no. One sister takes them to doctor appointments and the other lives next door and is on call for the falls/rescue calls. So while my stuff is daily and can be scary, it’s detached in a way. It’s the best way I know to take care of myself for now. The worst is yet to come and that is definitely scary. :(
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"Losing their money" you say. She blames him for losing their money.
So the real question here is whether there is any money LEFT now for all of this to matter at all. And whether either is incompetent enough for you to have the power to do anything but argue about it, torment yourself about it, and watch the money there is disappear.
I so agree with 97yearoldmom below. The question now is about future care and whether they will be on medicaid, or can still have enough money preserved to keep them safe.
You appear not, your sister or you, to have POA for financial. If you did you could give an "allowance account" and when it is gone it is gone while you pay the bills. If not, I think they are not severe enough for you to take over their accounts against their wishes.
There is either an answer to this or not, and if not you might as well relax and practice filling out medicaid forms.
I am so sorry. I wonder if they are much different than ever they were?
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KatieR27 Feb 2023
I don’t think they’re at all different. I’m 8/10 years younger than my sisters so grew up in the 80s with very different parents than they had. Both were married before I was 15 and has colleges/weddings paid for. I was spoiled as a kid then lived with “broke” parents. They could’ve cut back, acted responsibly with money, but didn’t. I do judge them for that as I’ve been married 24 years with 2 grown kids of own, so in hindsight, I think, what in the world were they thinking? They enabled each other to hide from the other as they tried to return to their glory days. My dad was/is (as he refuses to “retire”) a retirement advisor who cashed in whole life insurance policy long ago and has zero retirement. I’ve begged my mom to seek therapy or anti-depressants and she hushes me like I suggested she snort cocaine. My oldest sister has been called up to their house at midnight to literally lift her off the floor from fetal position but the next day she says the sun came out and all is well. So, my biggest struggle is being compassionate. Not being judgmental and prideful and calling them out on accepting the consequences of their choices while my sisters think I’m harsh. “It’s the disease,” they say, and I reply that they’ve been sick as long as I can remember then.

So, no, I don’t think they’re much different. Thank you for replying. It does help to feel heard instead of dismissed. My mom begs me to help and agrees to anything I say, but then turns around and loses receipts or lies about shopping when I get the alerts for any withdrawals so it’s like a child saying she didn’t eat chocolate while it’s smeared all over her face.
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If I were you I would plan for the day they have to go into care. Choose a certified elder attorney well versed in Medicaid for your state to guide you.
Their income won’t be enough to provide them care for as long as they may live given their current situation and health issues.
Look for a continuum of care facility where they can use their assets as long as they will last and transition into Medicaid when needed.
Does anyone have POA for either? From what you describe they both may have dementia. Mom certainly won’t be able to manage on her own.
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KatieR27 Feb 2023
Thank you. Narrowing info down to limited characters was difficult but it’s a start and I appreciate your reply. We (their $) paid for a year’s consult with an Elder Care attorney and my parents rejected every suggestion. The RN told me they were the most stubbornly oblivious couple she’s evaluated in 30+ years. The biggest obstacle was my sister inadvertently checking our dad out of the rehab facility in fear of paying OOP $ and thereby knocking him out of line for assisted living/nursing home. She didn’t realize he would have to go the hospitalization route again to be accepted, due either to overcrowding, Covid or both. He was approved for our state’s CHOICES program but still has a say, which was no. The neurologist who evaluated my mom sympathized and reminded me that she is coping the best she knows how. So we wait until…death of one or the other. It’s tragic to see death as relief when cancer/terminal illness isn’t the cause. My dad, who refuses to do PT/OT also ironically, won’t sign a DNR. I have POA with health decisions for both but not financial. I thought it covered everything until the banker told me otherwise. I brought my mom to give me permission to transfer her funds into the Trust. Two days later she called me crying that her money was gone. I gently reminded her it was safe in the Trust. She was relieved until a few days later when she called in fear again. Thankfully my sisters and I were never expecting an inheritance of any kind. We’re trying to avoid covering any of their debts. I typed a lot again…I’m 18 months into this but sharing online is new.
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