Eldest daughter wants mom to live with her

VeronicaQ

i am my mom's eldest daughter. the oldest of 6 children all whom live withing driving/walking distance of our mom. the youngest is 35 years old, still lives at home with elderly parents and has Downs Syndrome. We joke that mom and youngest are still connected at the umbilical cord- not an exaggeration - they literally co-depend on each other. I live in FL; mom in NY. I was there recently for 3 weeks to help with cooking, cleaning, companionship but I had to return to FL to my own family. My mom was diagnosed about 1.5-2 years ago. Her husband (my stepdad) has been her primary caregiver and by caregiver I mean he dispenses her meds and that's it. He cannot cook a proper meal for her ( i did happen to witness him cook her a hot cereal breakfast - ONCE) . He doesn't do laundry (I've found multiple pieces of soiled pants and underwear in her drawers; she doesn't understand that they need to be washed /insists that they are clean) . My youngest sister does most of the feeding/cooking for my mom-simple, basic stuff like salads and sandwiches not hot meals like chicken soup or rice like i made when I was there. Before i returned to FL we (me, my two sisters and step dad) interviewed a caregiver to help mom. We needed someone who spoke Spanish since mom was diagnosed she's reverted to speaking Spanish however, she (the care giver) doesn't speak English very well which may be a problem for step dad. Before I left I asked him if he would be calling the caregiver since I won't be there to help and his response was "if i need her i will call her" which left me feeling uneasy and that he wouldn't call her and leave my mom to fend for herself. The night i left i reminded him again to call the caregiver and he said he would be home to take care of her I asked him if he would prepare food for her and his response was "she can find food and feed herself if she gets hungry" well, the only available/immediate food for her is bread. I felt and have felt for a very long time now that this is a situation of neglect; he has a very intimidating, bullying, neglectful, deflecting, and self defeating personality that is putting my mom and sister at risk. The reason I flew up to help was because my sister had asked me to help her declutter the bedrooms on the second floor of the house where my mom and sister sleep after a SECOND outbreak of bedbugs occured. The house itself is in a sad state of disrepair with leaks in basement foundation, leaks in the bathroom, no hot water for bathing or dishwashing or laundry (room temp at best). I could go on and on and on but I'll stop here and ask how do I even begin to take legal custody of my mom (my sister is willing to take our youngest sister since she has been assigned as Standby Guardian). I wish I had done something sooner when my mom was still aware (For YEARS I kept asking my mom to come here to FL but her loyalty lies with my sister and step dad) now i feel it's too late; that she is in such a vulnerable state it might do more damage than good but I can't stand by and let her go unsupervised day after day (my youngest sister attends a day program for special needs adults). By unsupervised I mean my stepdad will spend more time raking and sweeping fallend leaves off the ground than he will watching over my mom , his WIFE . For example she was in the yard untangling some overgrown vines from a tree with her bare hands; he walks past her and casually says"watch out there's poison ivy but, ah you're gonna do what you want anyway" then walked away. I also told my mom to move away from the poison ivy; her response was "I know I get it all the time" !!?????!!!! Why hasn't the poisoin ivey been removed at this point??? Neglect, pure and simple neglect. I am one step away from reporting it to the authorites but won't because I don't want my sister removed and placed in goverenment custody she deserves better than that - she has siblings willing to take her. What do I do? I am at a loss. As her eldest and first born I feel the obligation to do something but what ? Where do I even start? I am on the verge of tears. This is my cry for help.

SDianeL

so sorry you are going through this. Has your Step Dad been evaluated for memory loss? Some of his actions are consistent with it. Perhaps if your sister took your disabled sibling first so she won't be placed in government custody, then you and the other family members could intervene for your Mom. You can file for Guardianship of her. Found this site that may help in NY. https://www.elderjusticeny.org/blog/adult-guardianship-basics-how-to

M1

Welcome to the forum. Two suggestions: there is a free 24/7 alzheiners help line, 1800 272 3900. They may have some suggestions for you. The other is to seek the advice of a certified elder law attorney. You are probably going to have to pursue guardianship, which may be costly, but it may avoid adult protective services. That also remains an option. I dont think it would necessarily mean that your sister would end up in state custody if there are family members willing to care for her. But in fact if your sister is standby guardian she is probably obliged to step in if your mother is no longer able to serve as guardian. Probably worth pulling out those papers and reading them carefully.

Your mom and sis are fortunate to have you looking out for them.

Quilting brings calm

I agree that the first thing is to get your youngest sister out and settled somewhere. Does your youngest sister want to live with your other sister or would she prefer a group home with other people like herself?

Then go for guardianship of your mom. It will be a battle because your step-dad won’t want to give her up and/or he can’t afford the financial hit that might occur. It’s also possible he has cognitive issues himself. Does he have someone that can care for him?

terei

Honestly, what I would do is make a plan with your siblings + go up there + just take your mother home with you. Let him know, after you get to FL that mom is ‘visiting’ you for ‘awhile’

Your other sister should just come + take your young sister to her home.

Does your mother have her own finances or are they all tied up with the husband? Somehow I doubt whether he can or will be able to organize himself to fight you legally. Tell your mother she is at your house for a ‘visit’ , at least initially. Get yourself a lawyer in FL that can help you regarding any assets that your mother is entitled to. If you try to do this through the legal system, your mother is going to be months, if not years being neglected, if not outright abused + in the meantime, he will try to obstruct anything that you try to do + possibly bar you + siblings from seeing her.

terei

Additionally, I would NOT discuss what you intend to do with the husband. He can find out what’s going on when you are in FL

ButterflyWings

What Terei said. That is exactly what I was thinking.

harshedbuzz

I'm going to suggest calling the 800-number here and ask to speak to a care consultant. This situation has a lot of moving parts and isn't going to have a simple solution nor is that solution going to come easily or inexpensively.

I would also talk with a CELA about guardianship in NY as that's where she lives. I would not signal your intentions to stepdad as he has control of access to your mom and could make things really difficult.

Can you have a family meeting with the sibs to discuss this rationally?

Are you all on the same page? Are they willing to support you in a bid for guardianship and moving your mom to FL? When my mom's sister obtained guardianship of their older sister, my mom (as sole surviving sibling) was asked if she agreed or wanted to petition.

You mention that they are local to her; are they engaged in her care in any way? Would they support you taking mom to Florida? Are you willing to relocate to NY for the rest of mom's life? Or would she be better served with one of them or in a MCF?

Are any of them willing to take mom in with your youngest sister? Do any of them have a history of supporting your mom/SD & mom as a couple? Do you all, as a group, support getting your sister into a supported community setting where she can ease into a lifestyle without this situation where she is caregiver to the person who is her guardian while your mom is still alive and could make the transition easier?

And where would that be? New York or Florida? While I do think your sister deserves her own life, I don't think it is appropriate for you to move mom away from an adult child with DS. Does your sister receive any services or participate in activities in her community in NY? Are there as many supports and services for your sister in FL? I used to be a forum moderator for a couple ASD support and information sites, New York tends to have more disability supports and services available than Florida. FTR, my parents had homes in FL and MD when dad was diagnosed. Our CELA did not support them staying in FL for a lot of reasons including availability of Medicaid for care in a facility.

The stepdad is an issue here. Is this incompetence something new? Could he be suffering with his own cognitive shift that isn't being recognized because you're all focused on mom and his looks different? I know a lot of men of a certain generation who don't know how to prepare a meal or do laundry and would be insulted if you suggested they figure it out, but they absolutely do know how to maintain their homes and gardens whether DIY or hiring professionals.

What's the financial situation? Is there money to maintain the house and provide care for your mom? Is this a long-standing marriage with mingled assets or did they marry later, perhaps when your mom was already starting to decline? Does stepdad need mom's income/assets to maintain his lifestyle? If so, he will fight you I'm sure.

This is one situation where I wouldn't lead with the nuclear option of having APS do a well visit. As a vulnerable adult, they'd remove your younger sister and family would likely lose control of decisions made for her going forward. This is another thing to discuss with the CELA.

Good luck.

HB

MN Chickadee

Definitely consult an attorney in the state of NY. You or another sibling may need to pursue guardianship of mom and sister. See if the Alz Association has any resources there. In my state you can pay a small fee for a care consultation with one of their social workers. They are good at bringing the family together (meaning your siblings NOT stepdad) and getting everyone on the same page with a plan. I would not say peep to anyone until you get legal advice. Also really important to document things. While everything is fresh in your mind start a notebook of all the signs of neglect.

VeronicaQ

thank you for all your responses. You've asked some very good questions. Yes its quite clear that Dad is also experiencing a cognitive decline- he has this habit of deflecting any questions you ask him - for example when I asked him about a start date for the caregiver he immediately turned his attention to my sister and asked her if she wanted the patio furniture that has been sitting in his garage - they both ignored me and began engaging in a debate about the furniture- I had to interrupt them but they kept at it. I later told my sister in private not to engage him in these debates- it takes away from the main topic- our mom and sister- it was very frustarating. Also he has been exhibiting hoarder behaviiour like cutting up carboard trash into little pieces and returning trash at the curb back into the house. Very bizzare. Don't get me started on the basement. As far as youngest sibling living with standy guardian neither of them is opposed to the idea but we are certain that youngest would be in a constant state of worry for mom since she has been the only one really who has been caring for her. Youngest is engaged in a daily program that she enjoys- she loves the staff; she responds to them really well. We have placed her on a waiting list for group home setting but are still waiting for an opening. All other siblings are limited in what they can/want to do for mom. 2nd youngest sibling has 2 kids and husband and works full time and has made it clear that she will not step into our parents house bc "it's disgusting/dirty/should be condemned" . my brother has stepped up somewhat but there's bad blood between him and dad. 2nd oldest sibling lives around the corner from parents- her role is support for our younges sister - they go food shopping together but will not help mom w housecleaning/ laundry/ cooking . This leaves me and my 3rd oldest sister to really do any grunt work for mom. as far as getting the house repaired.....if it were going to be done it'd be done by now- My aunt who is step dads sister has mentioned in the past that he has more than enough money to fix the house up but he is frugal - so much so that I was paying for most of mom's groceries, laundry and haircut and was not even thanked for staying and helping. Needless to say his incompetence is nothing new to our family - we were raised in neglect, fear, intimidation. I'm not looking for sympathy - just advice on the best course of action for mom and sis.

[Deleted User]

The user and all related content has been deleted.