Mom has Dementia - Looking for advice

Hi All. This seemed like a good place to post for ideas and/or resources/suggestions on my situation. I am currently researching more info with the Alz Org and getting more info from local sources, but I wanted your input on a purely financial aspect as well. Gory details as follows:

Mom:
She's 70, in the late stages of dementia, and a widower for the past 8 years. She does not speak English, and to put it nicely, she is very combative. She's done an excellent job of alienating herself from friends and family. I suspect there were long-standing mental problems that were swept under the carpet her entire life - this is the kind of off the boat, Italian family where sicknesses was considered to be punishment for something you did, and they also don't like to air out dirty laundry, so it makes for a very interesting life! To this day, we can't really give an accurate medical history, no one really knows what people really died of. I suspect her Mom also had dementia, and I suspect my Mom has mental issues b/c she abused us (my sister & I) both mentally and physically, and looking back now, I recall that she's always been on a low dose of anti-depressants from her primary dr - enough to try and take the edge off. Not very successful at that, trust me! Her marriage was arranged later in life, and I guess that once my Dad realized the bill of goods he had been sold, he ignored it liked everyone else, and stayed away as much as possible - he worked non-stop, and once he did retire, he was miserable being at home with her. After barely 2 years retired, he had a short bout w/Lung Cancer, and passed away within 8 weeks of diagnosis. Mom never went through the grieving process, and is still very mad at him for leaving her. Apparently, her plan was to die before him, so it was very inconvenient for her when he decided to die.

Financial Picture:
Not horrible, and no protection plans are in place. I'm fairly certain there is a will, but my sister can't find it in the house, and the lawyer hasn't returned my call yet. I attempted to get a trust in place once Dad died, but he told her to never sign anything b/c it would mean that we were trying to steal the house, so she refused to do anything. I also attempted to get a LTC policy for her, but she had always been a bit forgetful, so the primary Dr prescribed her 5mg of Aricept for a short while - enough for any insurer to run screaming in the opposite direction.
She owns her house, which is probably worth about $650K, maybe less if we tried to sell in this market. I haven't been privy to her finances for a few years b/c I was disowned for a while, but assuming my sister has done an OK job w/the $$, I'm guessing there's about $200 - $250K there, spread out in investment accounts and savings accounts. From what I understand, my sister has been added to all the accounts as a joint acct holder, just so she can access and move the money. Monthly income between SS & a small rental apt is roughly $24K annually. Mom likes to shop/bargain hunt, but has been homebound lately, so that's been curtailed. She was always pretty frugal though, so I know there are no credit card debts to worry about, and she never had a social life, so no money is ever spent on eating out or any other such "wasteful" spending (in her mind). The most wasteful thing happening now is due to her switching her schedule - she now sleeps during the day and is awake most of the night, so the electric and heating bills are easily $500/mo on AVG.

Other Points of Interest:
She's always been accident prone, but that will continue to worsen. For example, she sleeps on the toilet a lot, and a few weeks ago, she fell and hit her head - big bump and bruising, but she has been slowly healing from that. She also has COPD, high cholesterol, and a ton of other maladies that add to the prescription pile, but nothing that will really hasten the process, if you get my drift. Given her odd schedule now, she also doesn't take her pills as planned, and even when we try to remind her, she prefers to play with them, and I doubt she takes them very much. If we try to force her, she suspects we are trying to poison her, so we generally remind, but don't push. She's on Medicare, and she has supplemental insurance too. My sister lives at home and acts as the full time caregiver, especially since she was recently laid off. She pays some of the household expenses, like groceries and other utilities. She started a contract assignment yesterday that is slated to last until at least Feb, so now she'll be home even less, but given Mom's schedule, it doesn't seem to be too much of a problem. I'm in the middle of relocating from NY to TX in the next few months (Hubby's job was moved), so I'm currently living back at home for the next month, but that is temporary, and of no real help, other than to assist my sister in finding local support and options. Mom interrupts our sleep repeatedly through the night, to ask what day it is, what the weather will be like, and what time she wants us to wake her up - it hasn't been fun and I'm really tired! My sister seems to have adjusted, and does sleep through most of this, but not a great living situation, to say the least.

We joined a local support group last night, and everyone seems to agree - it's time for her to go someplace. My Mom will fight this at all costs - her brain may be gone, but her will is stronger than ever, and I know if we tried to bring in at home care, she'd pull a knife and do whatever necessary to scare them off. I am fearful of what she'd do in a nursing home type of environment - restraints would turn her into an animal for sure, and if left free, I shudder at the prospect of her messinga round w/other innocent patients, just to do anything necessary to get kicked out - it would be "winning" in her mind. Plus, the language barrier - this will not be an easy transition. What to do? She lives in Westchester County, NY, and the AVG cost of outside care would run $5 - $7K +++ monthly, so she'd deplete the bank accts in 2-3 years, assuming she'd even stay that long, and all while this disease progresses. Do we just let her "win" and stay at home, and wait for the next accident to happen, eventually one that will cause her to end her life? Is there anything we can really do at this stage to protect/preserve her assets, which she will need in the future for care? 70 ins't old, she could easily live like this for 20+ years...

Edit: Can't believe I'm getting red--I was just trying to help out with the situation.

I would start by messing with her some. Rather than try to have coherent discussions with her, just make random comments that mean nothing. "Mom, the blue cat is in the bay" she'll have no clue what you're talking about and she will forget it soon enough anyway.

Next, I would sit by her bedside every evening telling her the love story from "The Notebook." Make her think that it's about her, then at the end of each day, tell her that she was never loved by anyone--again, she'll forget soon enough.

Third, I would shorten my posts to bullet points so that someone might actually read it and give some real advice. Nobody wants to read a wall of text.

The summary as I understand your ramblings
Mom is 70
She has dementia and perhaps depression
Sister is primary contact and caregiver
You have been disowned recently enough to not know full situation
Sister is in charge of fiscal situation wills and is the one doing the day to day help.
Mom has house worth approx 600K and has money approx 200K
Sister is Considering putting her in a home

You need to do all you can in terms of supporting sisters efforts
What that means is start talking up every day when you call your mom the merits of a group home and how lovely group homes will be
What that means is for now if local start visiting every day.
If not local get someone maybe a local charity group to get her a daily visitor just to know she is ok
Get her a I've fallen and I can't get up necklace
Support sister in any way you can in looking at and determining how to get the correct care for mom
Once determine what sister wants to have mom to move to start in your daily conversations talking up that option to mom . It will take time but if you daily or more often tell her it is wonderful over time she will begin to believe you.
Follow sisters lead on this.

Hunny156 said: She lives in Westchester County, NY, and the AVG cost of outside care would run $5 - $7K +++ monthly, so she'd deplete the bank accts in 2-3 years, assuming she'd even stay that long,

$650,000 + $250,000 = $900,000

Not counting the SS and Rental Income or any interest earnings, 900000/5000 = 15 years 900000/7000 = 10.7 years Not 2-3 years.

The house appears to be a significant asset that not only provides her with the capability to pay for her care, it is worth a sufficient enough amount to disqualify her from most other options to pay for that care.

You don't have a financial issue here -- you have an emotional one. And that, unfortunately, is probably more difficult to solve.

Ok well since you do not like the suggestions exactly what is the question you are asking?
Mainly you are ranting without asking a real question

Mom needs help
Medical help
Physical help
Yes you might end up paying for her in a decade or some with your sister.
Fiscal help if she makes it more then 10 years.
But she might qualify for some aid and assistance.

You as her daughter morally are obligated to help

barbcole said: Hunny156 said: She lives in Westchester County, NY, and the AVG cost of outside care would run $5 - $7K +++ monthly, so she'd deplete the bank accts in 2-3 years, assuming she'd even stay that long,

$650,000 + $250,000 = $900,000

Not counting the SS and Rental Income or any interest earnings, 900000/5000 = 15 years 900000/7000 = 10.7 years Not 2-3 years.

The house appears to be a significant asset that not only provides her with the capability to pay for her care, it is worth a sufficient enough amount to disqualify her from most other options to pay for that care.

You don't have a financial issue here -- you have an emotional one. And that, unfortunately, is probably more difficult to solve.

Yes, I understand your reasoning, which is why I said it would deplete her bank accts in 2-3 years. House is a sticky issue - she owns it, and we don't have POA. Also, Dad told her to never sell the house, so barring us lying to her at the closing table, and hiring unethical lawyers to look the other way about that whole sound mind and body thing, how do we even attempt to sell the asset? Oh, and the apt int hat house is undocumented - Dad paid someone off when he built the house, so that's another minefield to wade through that could lower the value of the house or cause significnat penalities that will cut the net value significantly....

Maybe you should lay out a draft of your financial plan for them and then ask this forum to improve upon it?

Hunny156 -- my heart goes out to you, as I went thru much the same with my Mom and her dementia 5 years ago.
I hesitate to give advice right off the bat, b/c each situation is different. I guess the bes one can do is
just try to remember that this person at her core is still the same Mom who raised you, even tho outwardly
she might have changed.

There are many things to be done during this time -- financial, estate, care, housing -- and I see you are
addressing them. Just keep posting here with your Qs (feel free to OPM me as well).

Take care and I wish you all a good Thanksgiving,.
Scott

"Conservatorship" is an alternative term and legal process, as well. Call your county probate court and they can usually answer these questions or refer you to a social worker who can.

Long story short, we just dealt with a bunch of similar stuff in my family.

too long. did not read.

Your mom needs help, like many others said.
If she refuses and impose danger to any around her, they will keep her sedated and confine her until she softens up.

Woodchuck312 said: your mom sounds like a rotten human being, why not just disown here and let her fend for herself.... problem solved.

Don't think the thought hasn't crossed my mind! I guess she did a great job laying down the Italian guilt trip on us. I'm not really sure I love her, b/c I know she didn't love me, but I just feel really bad for her. She's had a miserable, unhappy life, even if most of it was self inflicted. I've been able to move on, create a better life for myself, and once she passes, I will do whatever I can to help my sister. Our relationship is finally being repaired a bit too now that she's finally seen the light, but Mom raised us to tattle on the other in order to be the "good" daughter for a while in her book, so that stuff runs deep and is hard to break - a lot of warranted animosity there.

OP, I was the caregiver for my Mom who had dementia. We also just went through this with hubby's Mom. Both his sisters tried to be the full time caregiver, but their mom was no longer the docile, sweet person they knew. It was impossible, so they put her in an assisted living facility that accepted dementia patients. Did she want to go? Heck no. This might sound cruel but sometimes it boils down to this: tell Mom we're all going out to dinner. Take her to the facility. Just keep telling her "this is where you live now". Let the facility people do their jobs. Dementia patients, sadly, get to the point where it is impossible to give responsible care at home.

Most important, remember that you Mom's reasoning skills are broken. There is no point in trying to reason with her. You're wasting your breath.

Beyond that, why are you trying to preserve her assets? The assets are there so that her elder care does not wipe out you kids financially.

I don't mean to sound cold, but do whatever you can to secure a DNR order. My grandmother suffered with dementia for over a decade, and finally my granddad allowed her to pass without resuscitation (though she very likely could have been revived).

Once a person's quality of life is that poor, do them a favor and don't try to keep them around any longer than they can manage naturally (not that it sounds as if you'd be likely to do so).

arch8ngel said: I don't mean to sound cold, but do whatever you can to secure a DNR order. My grandmother suffered with dementia for over a decade, and finally my granddad allowed her to pass without resuscitation (though she very likely could have been revived).

Once a person's quality of life is that poor, do them a favor and don't try to keep them around any longer than they can manage naturally (not that it sounds as if you'd be likely to do so).

You don't sound cold at all, you sound reasonable and practical. Thank you for joining the conversation and providing a decent suggestion.

Personally, I feel bad, b/c I feel like her quality of life is already gone, but obviously, she's still fine physically, so we'll continue on and do the best we can.

I checked out the DNR in NY State, and I need to have a Dr there to sign off that she understands what she is signing. She won't sign that for sure. But, I was able to get her to sign a Health care proxy, so that will allow my sister and I to make her decisions, at least officially. We've been going to her Dr. appts and translating for her since we were kids - we'd just skip school on those days - so any direction on what to do medically has always come from us, and not our parents.

SunDiego123 said: Hunny156 said: I'm dealing w/enough crap, I don't need your pathetic musings. Not everyone is money hungry, even if they do join fatwallet. It's about doing what's financially prudent, get it?Wow. I thought I posted from a compassionate perspective, considering we have been thru this twice. And you accuse me of "pathetic musing"? Seriously? Wow. Good luck to you.To be fair, that comment was probably aimed at my post right below yours.

Let me be clear - it was adressing both of you back to back comments regarding her assets. SunDiego, I had no issue w/the rest of your post, and I felt/feel for you and what you went through, but the last comment was hurtful to me, especially since you were dealing with the same issue. I don't know your financial picture or how old both the moms were in that scenario, but after dealing with it firsthand, you should know exactly why I'm trying to preserve assets, or keep the cash flow running as long as possible, or whatever else term you'd like to call it.

glxpass said: The problem is that you aren't going to find the answers you need here, but rather from a trustworthy attorney who specializes in this aspect of the law. You'll probably need one or more attorneys specializing in estate planning and mental competency hearings. If no one has a power of attorney in this situation, it seems that there will have to be an examination in order to determine whether your mother is competent or not, and one or more competency hearings to make a legal determination of that.

All this will cost money, and the language barrier could be a challenge, but I don't see any other alternatives to getting legal representation. You might want to consult with the local legal aid society in order to find out if there's a way to enter these types of proceedings minimizing the financial impact to you and your family. If there possibly are legal documents such as DNRs, living trusts, wills, etc that you might be unaware of, this link might give you ideas for finding them.

All excellent points, and I'm looking into all that right now. Thanks for the link, it was helpful. I know the attorney, I actually used him for my will, and he drew up wills for both my husband & I, just like I remember he did for my parents. I can even rememeber them getting dressed up to go meet w/the lawyer to sign the wills, so I'm fairly certain that at least the will is out there, somewhere. I called and left a message for him yesterday, but haven't heard back yet. It's a short/holiday week, so I'll follow-up with him next week and see if he can't help me.

My cousin just reminded me that when my Mom had disowned me, she had mentioned to some family memebers that I had stolen the will from the house, and that's why we can't find it now, b/c I have it, LOL! It brings up a very good point though, even she remembers it exists. I wouldn't put it past her to have thrown it out, thinking that would have voided the will. Let's hope the lawyer has a backup copy...

Whatever happens, definitely try to visit your mom regularly if you put her in long term care. Things sound like they were strained, but no one deserves to spend the last years of their life alone and miserable in a nursing home. Who knows - you might be able to have a little bit more peace when she does go.

biomedeng said: Hunny156 said: I'm trying to preserve her assets b/c if we act prematurely and deplete said assets to early, the options for those w/o money are atrocious at best. She may have been a b*tch to us growing up, but I don't want to see her rot in misery in some one size fits all hellhole w/minimal funding.
I had a relative who had minimal assets (below 100K, lived in government subsidized apartments for the elderly) and she eventually needed to go into the nursing home. The person in charge of this relative went around to all of the nursing homes that took medicaid and checked them all out (in a medium to large city there could easily be 15-50 homes). She found an older home but rather nice with extremely caring staff. My relative lived in the nursing home 6 months before she passed. We insisted she be put in the medicaid wing even though she was initially private pay so that we wouldn't have to move her later on (although her money never ran out). The staff who cared for her had no idea she was a private pay patient (they were quite suprised when we told them in the end)--however these people were AMAZING and treated her much better than the staff in some of the fancy nursing homes my other relatives have stayed in. Perhaps what made the difference was that someone went to the home every day to check on our relative and learned the names of all of the staff (frequently giving them snacks as well).
Not all medicaid homes are hellholes and some private pay nursing homes are. Start immediately checking out 2-3 homes per week so that you will have options when the time comes. Find at least 3 homes near you that are acceptable (since often they are full when you need them). If you put your relative in a home check on them at least 2-3 times per week.
Seriously your mom has possibly 800K plus retirement benefits, which is enough for at least 10 years at a standard nursing home. You are in a far superior condition to the average family dealing with this problem. Obviously she could live 20 years, but statistically this is unlikely.
If you are interested in possibly keeping the house and getting your mom medicaid then you should explore the option that if you or your sister live with your mom for 2 years before she goes in a home and you can document that this delayed her entry into a home the home can be directly inherited by you or your sister and not be subject to medicare reimbursement rules.
Also if your mom is hospitalized for 3 or more days tell the doctor to discharge her to a nursing home. Medicare will pay the first 120 days of nursing home care after hospitalization, saving you 4 months of nursing home bills. In our experience the doctors were willing to work with us to make sure the trip to the nursing home was documented as medically necessary. If however your mom comes home first and you decide you cannot handle her post-discharge needs medicare will not pay for any of the nursing home stay.
The very best thing is to get you and your sister on the same page. I have seen families split apart over how to best care for the parent. I hope it does not happen to you, but IMHO it seems more likely than not given the fact you and your sister have a rocky past. Work hard to communicate well with her and try not to hold grudges against decisions she makes.

Wow, this is like the best news I've heard all day! My Sister does live at home, and has been the primary caretaker for the past 8 years. I'll bring this up to the lawyer and see how we can handle documenting that - even if we need to keept her in the home a wee bit longer to prove that this delyaed her entrance into a nursing home, it would be a viable option, and my sister has been excellent about taking her to many doctors to find treatment options for all her ailments, so hopefully that also helps document her efforts in keeping her out of NH's for over 2 years.

I didn't know about the discharge to a nusing home thing, so I will keep that in mind too. Even if it is short term, my sister's nerves have been frayed thin enough already, so it would be a welcome respite for her. I think we'll be OK going forward, at least wehre my mom is concerned, as we both are on the same page now on that subject, and I will support her decisions and rationale, whatever they may be.

I'm in the area for the next 5 weeks, so I will start to make appointments and see what's available. I'll also ask the support group, as it seems like many of them have already been through this research, so hopefully they can give me some recommendations and steer me away from ones that are truly bad. I hope you are right, and that we can find some acceptable places - we may have to put her in the same place for the duration, she's not one to deal well w/change, and I understand that changes really make the downward spiral move faster.

Again, thank You!

The Area Agency on Aging, or some like social service organization, can help you with this. They can do referrals and evaluations to find out your mother's needs and cost and availability for same. They can also help with conservatorship if your mother has dementia.