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My mother (79) has dementia along with diabetes, high blood pressure, an aortic aneurysm and lactose intolerance. She is a danger to herself with leaving the stove on, not taking her pills, eating foods that give her diarrhea and are not good for her diabetes and is a fall risk. She insists she can live on her own when I do everything from paying the bills, budgeting, grocery shopping, cooking, cleaning, yard work and anything else that needs to be done. She can't even bend over to pick up something she drops, how can she think she can function alone? Anyways, this comes up because she needs constant supervision and I make very little money babysitting so I can supervise her 24/7. She always throws it in my face that I do not contribute financially. I do, not as much as I wish I could, but I keep and maintain a car so we can get to needed appointments and places and so I can do errands and go grocery shopping and I contribute to the groceries and necessities. But she and my sisters make me feel like a leech when I have given up ten of my best years to be here for her so she can stay in her own home. But enough is enough. I want out. If they think she is better off without me, how do I make that happen? She needs constant supervision. I feel that if I leave, it won't be long before she ends up in a nursing home as the sisters refuse to do their part in helping. She isn't making much on SS so funds are an issue paying out of pocket for in home help. My mom is dead set against going to a nursing home and I feel it would make her give up on life. I love her more than anything, but I need to start living my own life and feel worth something again. Where do I start?

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You start by saying no and putting yourself first. Move out as soon as you can. The longer you stay in this situation, the harder it will be to get out and more you will ruin your own life.

Contact APS and report her as a vulnerable adult. Let them come in and assess the situation. You can’t help your mother if she won’t help herself. Good luck! You can do it!
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notgoodenough Jun 2020
I agree with Cali. I think in order to effect any sort of meaningful change you will have to get out of mom's house, because I'm betting your sisters consider your caregiving your part of "rent" so to speak - especially if they've been giving you the business about "not contributing" to the household expenses.

I know it will be really tough to scrounge up enough money to be able to make that happen, you might have to borrow some money in the short term. But as long as you're living under your mom's roof, you're going to be her caregiver, and as Geaton so eloquently put it, perpetuate the illusion of "independence". Give mom and sisters 24 hour notice ("I'm moving out tomorrow") and then do it. Let them scramble and take care of mom for a few days and I guarantee the rose colored glasses through which they see mom's health will be removed, and they'll be onboard with placing her in a care facility.
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It’s time for a family meeting where you tell mom and sisters that you will no longer serve as a full-time caregiver. You are done. With that assertion firmly in place, tell them you are willing to help make plans for next steps for mom with help of sisters. Sisters must contribute.
Make goals and plans for yourself with a timeline for moving out and on with your life. Don’t back down. Don’t let them FOG you. Fear-Obligation-Guilt.
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SMacArthur Jun 2020
Don't tell them the details of your plans either until the last minute.
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NutMeg, just because she wants to stay in her home doesn't mean she should, or gets to. You are orbiting around her to prop up her delusion that she is "independent". If the sisters are dead set against her going into a nursing home, then they can deal with her care. You are not responsible for her happiness. You are not obligated to participate in her care, physically or financially. Find another place to live, a new job and give them your resignation notice (about 1 month). Everyone ages, everyone declines, everyone dies. Everyone needs to be realistic about this and as adults, plan for this eventuality for themselves. Your mom didn't do this. That's on her. No one asked for your consent in being her indentured caregiver. Please do not feel guilty for leaving. I wish you all the best as you start a new life.
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*Where do I start?* It's a very good question - it can be overwhelming!

I think start with more knowledge about Mom's whole health situation. That may show the way forward.

Has she had a thorough medical checkup lately? Book it & take her. Discuss your concerns with the Doctor - just a short version will do. "Mom needs a lot of help these days. I'll be returning to work & possibly moving in the near/medium future. What do you suggest?"

Don't dismiss any suggestions the Doctor makes - warning: talk of NH or even hospice may even come up. But get the FACTS. Start there.
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First, get the job.

Then, tell your mother and your sisters that you will be starting work on [date] and they will need to arrange support for your mother.

You're right: your getting a job and an income will change their attitude beyond measure. Yours too. That's definitely where to start. Do you have any employment ideas in the pipeline?
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As a rule, don’t rely on someone with dementia to determine whether they can or cannot live on their own. If they had that sense of judgment, they wouldn’t be dementia patients.

Do YOU have the funds saved up to move out? You have no power or standing if you don’t have the ability to be free of her home. You can’t say you’re done and leaving if you can’t actually go somewhere and get a place to call your own.

So get the job you want. Start building savings quietly. If in your absence while you’re working, your mother has an accident — well, that proves that point. If not — when you’re able, get a place and get out, and then negotiate what is to happen next.

No one needs to acknowledge that your mother needs a different living situation because you’re there maintaining her living situation. So the first step is getting yourself out.

Then, if what they all want is for you to care for her — that will have to be your JOB if you’ll be giving up your own to do that. If they can’t afford that, or are otherwise unwilling, then they’ll all have to step up to do their part or find a nursing home that will.

This doesn’t all fall on you. So work on yourself and building yourself up to where you can properly negotiate what needs to be done.

My two cents.
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My concern with getting a job first, is NutMeg may be stressed at work (is Mother putting the electric kettle on the gas stove etc...) & that Mother may call 100x a day with needs/attention. Not a great start to a job.

Maybe a part-time job & a paid Aide while at work? (If there is an affordable service for this). But casual jobs will be impossible as Aides need to be booked in advance.

But I totally agree warning Mother & siblings NutMeg will be making this big change. Since currently there, to give notice is reasonable but to just leave unreasonable. OP should be warned to expect pushback +++ to remain.

Reaslistically, if Mother needs all day supervision, either A. Aides need to stay all day or B. she moves into care. Need a realistic view of her needs first.
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Beatty, you have to have the job first for the people who need to do something - mother, sister - to have the reality dawn on them that the something needs to be done. Otherwise it's always over the rainbow for them and they sit on their hands forever.

It is also possible that you may have to call their bluff. That requires nose-hardening, I agree, but it is temporary.
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Beatty Jun 2020
"over the rainbow" lol

Yes agree. I talked & talked about not being the 'on call' option for my days off. Phone would still ring.

I mentioned possibility of working extra days/weekends & informed them. Got blank looks.

They had an alternative. To increase hours from a care agency.

It was with councelling I saw this 'only family can do it' cr@p I was falling for. The F.O.G I was under.

I took on extra work hours, study, hobby - added to MY life. I gave fair warning & alternatives. I don't believe in just walking out. Especially if dementia or cognitive issues - they really are vulnerable & don't get it. It really does matter who has authority. I had none to book an agency. If I did, they would cancel. (I actually found out later they were cancelling agency shifts on my days off & calling me instead).

My relative actually had to sit, wet, dirty & unwashed several times before they arranged more care. Many times fallen & waiting for EMS too after I stopped attending.

I truly hope NutMeg's sisters are not so stubborn. That they can see she needs a life, support a change & help find a solution. Not just pile on the problem: no we don't see any issue.

I think that's why I think a Doctor's recommendation is required. If he/she says what care is now required. It does sound like assistance for all ADLs & all day supervision. If the sisters have that 'family only' mindset, they will have to either step-up big time or lose that mindset fast.
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Thank you all for the input. You are right, maybe a part time job at first, to start a savings plan and go from there. If I line up a job and then inform the sisters they need to help find care for when I am absent, they might step up. They might not though, considering they don'tseem to grasp how bad her memory really has gotten. She has almost started a fire a couple times on the stove before, when I was gone for an hour running errands. They tried to give excuses saying anyone could have made the mistake. She also goes right to the baking cabinet when I am not around to eat sugar. Yes. Sugar. With diabetes. I have to lock the fridge when I am not present because she helps herself to sweets and dairy. Which makes her have horrible accidents on the floor, which I need to clean and if left unattended she will forget and track right through it and walk all over the house, it has happened twice.. So yes, I have to have peace of mind or a job will not work out. I have no support network with her. I am adrift at sea. I already went though caregiving for my Dad for 6 years, until he passed. My life is not my own. Thank you for helping me find my first step.
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Nutmeg, I understand the pros and cons of getting the job first. While you look for one, here is something else to think about doing. You are ‘enabling’ your mother and your sisters to believe that your mother is ‘independent’. What can you stop doing, that would be fairly safe but very inconvenient for your mother? Picking things up off the floor is an obvious start. No appointment deliveries, she can organise a taxi and take herself. Eat out yourself, let her make her own dinner. What else? The issue is to stop the thinking that mother can live on her own, you are doing nothing important for her, and you are in fact a bludger. Tell your sisters what you are doing – you are stopping unnecessary ‘help’ because you are looking for a job and a new place to live, and it needs to be clear how your mother will manage when you are not there 24/7. And keep notes of anything you did decide to ‘help’ with for safety reasons, so that is clear too. You can do all this immediately. It may help you to feel that you are taking positive steps, and it may also push things to a head.

This extra option may sound a bit harsh, but at least consider just accepting her poor food choices. If she makes herself very ill, it will also bring things to a head.
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Call the Area Agency on Aging to come in and do an assessment of mom's needs and ask about available resources in your area available to her or you as the caregiver. Maybe an independent, unbiased assessment would help the situation. Very few with dementia are able to remain in their homes because of the increasing care needs.
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If she is low income, there might be funds available for in-home care through Medicaid. You should explore this option while looking for employment, so that she will have someone there to watch over her.

"...how can she think she can function alone?" This is dementia lying to her. My mother was the same way - her mantra was that she was "fine, independent and can cook." She was not and could not! Despite AL being in her plans before dementia, once it kicked in, even in the earlier stages, this was NOT an option for her anymore. It was even more distasteful than offers from my brothers for her to move in with them (but was still adamant that she was fine and wanted to stay in her place!) We did try bringing in aides, just for 1 hr/day to check on her and make sure she took her meds. That didn't last 2 months - she refused to let them in, so we had to figure out a way to move her to MC.

Given your mom's various ailments, she could likely also qualify for NH. Many people immediately say NH, but that is mainly for those who need specialized nursing care. Medicaid can be used for NHs, but not so much for MC (there are some exceptions.)

While looking for employment and exploring what help might be available (you can try push back on sisters, but I wouldn't hold my breath on them changing!), you should also look at dementia-proofing the home, like child-proofing. You mention locking the fridge, which is a start. If you are going out, even for short trips, you should disable the stove. The cabinets can have child-proof locks installed to prevent her getting into sugar, etc. These will not only help her, but you as well, since you have to deal with the aftermath!

Does anyone have POAs? These will be useful for managing her finances and medical care, but will NOT give anyone authority to move her. If no POAs are in place yet, it may be too late. Some attorneys will question the person, to determine if they are capable, but given what you've said about her, I don't see that happening.

Just finding a job and moving out shouldn't be the only steps taken. They are important for you, to provide you with a life and future, and should be part of the plan, but she should not be left to her own devices, as she is not capable of self care. EC attys are not cheap, but often will at least offer a short first consult for free. You can find local ones using zip code at naela.org. Have all questions and concerns ready before any consult. Be sure to highlight lack of funding for atty and care options. They can also help with processing Medicaid care. APS may have suggestions, but generally they are not your best option for help.

Your sisters are at this point very selfish. They have relied on you all these years and expect it to continue, but offer no help. Although my brothers did contribute SOME to input for plans and a little help in dealing with things, certainly not enough or their "share." At some point I found it best to just do what needed to be done and forget consulting with them. I don't and won't provide the hands-on care, but I do manage and take care of everything else for her care. One brother I haven't spoken to or seen in over 2 years now (related to his abuse of me) and the other is becoming more difficult to deal with. Once mom passes, I plan to consider myself an only child! We share parents and genes, but that's about it. I often have said, and still believe, that I received most of the brains in our family!

Best of luck - work on finding the right solution for mom and yourself. Don't count on their help too much.
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disgustedtoo Jun 2020
Afterthought - do ask EC atty about guardianship. Again, this will take time and some money (depending on her income, their might be ways to defray the costs), but there are 2 choices:
1) you apply to be guardian
2) allow the state to be guardian

Option 1 will NOT require you to provide her care. You would just be the one to make decisions and oversee her care, preferably in an appropriate facility. It requires keeping good records and reporting to the court when requested, but allows you to ensure she gets the care you prefer. It also overrides any POA, in the event that one or both of your sisters have been "assigned" as POAs.

Option 2 means none of you will have any say in where she will live or what happens to any of her assets, including a house, if she owns it. You can still visit, etc, but will have no input to residence, care or finances.
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we have similar experience and i know how hard and mentally draining this is. I have reached out to a lot of resources and finally even though it’s still in the process, I have something to look forward to when the time comes. I sought the help from Senior care solutions and was told to apply for assisted living waiver. The wait is 2 years but it has a loop hole so she can get in earlier. So I reached out to APS who is currently helping me. So far, I’m getting the answer that I need. Im currently applying for conservatorship and IHSS. This is a battle that we have to face as children because we love them.
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Are you not getting paid from her assets to care for her? If not you should be.
This might help your situation.
It also sounds like your mom can not make decisions for herself about her safety.
If this is the case and with the dementia diagnosis you or a sibling can obtain Guardianship and place her in Memory Care where she will be cared for and will be safe.
Application for Medicaid would help. Most facilities will want private pay for a while before Medicaid kicks in but there may be some that would accept her right away.
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I have never been good at standing up for myself or tough love. My first thoughts are, "she raised and cared for me for so many years." Which I do see is part of the F.O.G. She also did the same with my other siblings, who are all older. I am the youngest, though not young at all. She had in home care after a major surgery that included wound care and a colostomy bag for a little while, but that did not last and it was all left up to me. I will tell you, dementia and a colostomy bag is a horrific combination. The things I had to deal with, no one should have to go through. Funny how my siblings so easily forget things like that. They do not even consider my caregiving as a contribution. They seem to think I can work a full time job while simultaneously care for Mom and pay the bills myself. I would need two clones of myself to pull that off and the burnout I am feeling just caring for her is another thing entirely. I have let my own health go, to the point I lost my primary care doctor and have to now wait a month for my new one while battling a sinus and ear infection I have had for a month and a half already. The resentment is strong and I hate feeling that. Having a community to talk with and share our stories and suggestions is really helping. Sorry for rambling on. It is just so nice to get it out and know you all understand where I am coming from.
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Isthisrealyreal Jun 2020
You need to go to urgent care. It doesn't make any sense for you to suffer when help is available.

You could get one of your siblings to come sit with mom or leave her alone if that is possible and then call them to come to her.

You don't have to wait, get seen today.
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Nutmeg, do you have an emergency plan? Like if your ear infection was a broken ankle instead? Or chest pain? Or any such thing where you needed urgent care/EMS. Could you count on one of your sibs to arrive, suitcase in hand (Mary Poppins style) to relieve you?

If yes, good. If no. Ok need a plan.

Would a sib arrive for you to take a holdiay? Or if you just needed a weekend to recharge? Who's backing YOU up?
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NutMeg83 Jun 2020
No, I don't. One of my sisters used to take her once in a blue moon for two days at a time when things were getting out of hand and I was at a breaking point. But it always revolved around when it was convenient for her, not me. Now that we have the whole pandemic thing going on, they don't even show up at all. They Zoom with her, which actually just adds to my load because I have to get it all set up and deal with my Mom's complaining she doesn't want to do it every time. I guess if there was an absolute emergency someone would HAVE to step up. Not sure who actually would. There used to be a thousand excuses why it wasn't convenient for them to take her when I needed it.
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