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My mom's stroke was in April 2022. She's now paralyzed on the left side with no 'return' of movement at all in the hand/arm. Little return in the leg so she can do transfers in/out of bed but that's it-all ADLs (except eating) require a 1 person assist basically. She's been in rehab 5 days a week since April - the rehab staff in the nursing home will discontinue all therapy (PT/OT) and give her the news of this in a few days as there hasn't been much improvement.



Our entire family is MIA (just a lot of dysfunction) so it is totally just she and I. She's in a nursing home right now which she is not adjusting to well at all (she lost her house weeks before the stroke).



I am desperate for tips on how to support her better as I feel I'm failing. I visit her several times a week, bring her supplies (blankets, clothes, shoes, incontinence pads and briefs, tissues, sanitizer, soap, hair products, etc etc), food/treats, take her out once a week, hire an agency to take her out once a week as well (which is getting to be 'very' expensive). The issue is this: If I ask her if she needs help with something while say for instance, we're doing a bed bath, she'll say "I guess I thought you had enough sense to be able to just KNOW". If I don't ask, and I just 'do', she'll say "I can do that!" and she'll get agitated saying I'm trying to be in control of everything. If I don't do anything, then she tells me she "knows I'm not taking any initiative to help her because I don't want to help her and I want to see her suffer and she doesn't know why I'm there since I have no intention of helping.



We didn't get along that well pre-stroke. I'm considering bringing her home to live with me once her disability check comes through. But I feel like we need counseling because we argue SO much now and it takes a toll on me seeing her in the physical and mental state she's in, then on top of all of that her speaking to me in the ways I mentioned above-although I'm the only one here/supporting I feel like I just.can't.do.anything.RIGHT.
I know part of this is mental illness which existed pre-stroke playing a role (pre-existing bi-polar/depression/anxiety/PTSD from major trauma/hoarding/OCD which has never been treated).



Tips? Is there really anything I can do better or do I simply need to adjust my expectations that my mom will practically never be able to healthily adjust to her condition (at least to the point of not being SO argumentative all of the time with me)? I just don't know I can take her in and continue working while dealing with so many of the personality/relationship issues on top of what's needed to just provided daily care for her as a stroke survivor.



I really could use any/all advice/insight.

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As I read the answers below, I agree that in some cases you want to have your parent with you. Having an agency come in will help much. I’m curious if there are forums in other countries as you mentioned. I’d like to read and hear what goes on with eldercare in other parts of the world. My mother is with me. I don’t want to put her in a home. With stroke paralysis just like other issues, you will need professionals brought in to help you.
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I think honestly, why don’t you read her what you just wrote. I can see how you are sincere and your heart is in this. Kudos to you for standing up! So many would balk at this situation, dump her and run! Maybe if she sees how much you are wanting to try, she will too.
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PsalmsTestimony Dec 2022
To clarify, if she she’s how much I want to try, my mother might also try..to do what exactly?

Do you and your mom live in the US? What is her condition? Do you feel you made the right decision in having her home with you?
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Try to find a better place for her, but it does not sound like a good idea for her to move in with you. As she ages, she'll need more help. Will you be able to handle that along with working? In an assisted living facility there are 24/7 professional staff. They will take care of all of her daily needs. Connect with a local social worker to find out what her options are, given her finances and what you are willing to contribute. Don't neglect putting away savings for your own retirement. All the best to you and your mother.
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Do not bring her into your home. She is already guilting you. Imagine that going on steadily and you have no where to go to get away from it. Keep her in the assisted living place. She is lucky she got a spot. It will take some adjustment but this is her life now.
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PsalmsTestimony Dec 2022
She's in a nursing home. A really, really really bad one.
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For me, I would not make any attempt to bring her home to care for her. You need to be able to have a life. You are doing an awesome job with all you do already. I am sorry your family is not participating, but you can't control that, or your mom's attitude. My sibling had a stroke. Although he recovered amazingly well, he is angry too. They grieve who they used to be.
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PsalmsTestimony Dec 2022
Yeah, I originally created this thread because my question in the thread was how to get along better basically. If there's anything I could do differently to do so.

But it turned into advice on not bringing her home which I already knew everyone in this forum is against doing that.
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I do understand where your coming from as we have a similar situation ourselves with our 95 year old mom. Only she is home and the day will come we have to put her in a nursing home.
She also lashes out at us when being cared for due to I think frustration with herself not you. Trust me when I say you do not want to bring her home with you. She is probably getting better care there than you could provide for her by yourself at home. Keep doing what your doing or maybe just be there as a daughter and let the staff take care of her adl's. Keep in mind strokes affect the brain and some people's personality change afterwards.
Whatever you decide she knows your there doing your best for her deep down and appreciates it. Maybe it's time for you to take a vacation from everything as well. It won't do any body any good if you don't take care of yourself. Guilt free.
I hope this helps somewhat.
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PsalmsTestimony Dec 2022
I swing back and forth between wanting to bring her home versus just moving away from it all (I'm a traveler at heart, I move often, I want to eventually live abroad, and I absolutely HATE the city she lives in that I moved to to be closer to her...I 'cannot' stay here in this city OR this state long term fyi). I just can't do it.

On the good/decent days (80-90% of the time) I'm fine and I think I could bring her home with a full time live-in caregiver (plus the use of the current agency I employ for backup + adult daycare for extra backup).

On the worst days (10-20% of the time), I just want to say 'forget it all' and just move forward with my planned life of moving abroad 'alone' and not worry about anything..like my brother does.

Life seems like an emotional rollercoaster of decisions these days.
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As many have said, and I will repeat - DO NOT BRING HER HOME with you. If you think your relationship is 'unpleasant' now, it will become enormously so if you bring her to live with you 24/7. Strokes can mess up brain cells and make the person you knew become the person you have no idea who it is anymore. Don't take things personally - although as a daughter, that is extremely hard to do. You will have to figure out how to accept that your mother will not be changing, and in fact, possibly, could get worse -maybe not her physical condition but her mental state of mind and being.

Bringing your parent home, especially a parent with medical challenges like your mother's, is a full time job - 24/7. You will not have a day off, you will not sleep through the night, and your mother will become more demanding and more critical - it is just the way things are. And what happens if you become ill - who will take care of the two of you at the same time? What about when you need to take a small weekend get away for sanity sake, or even longer time frame?

Your mother is in a nh and if you can afford to do so, this is where she should be. If funds are limited, then start the paperwork process to qualify her for gvt assistance.
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PsalmsTestimony Dec 2022
My plan was for a live-in caregiver. I found two agencies that provide live-in staff. They provide up to 12 hours of care 7 days a week and replace the live-in with a backup when the backup is out. They take care of the taxes, legalities, etc. (as they are in another country I'm considering moving us to). I thought this plan plus adult day care would allow me to work. Your thoughts? *However*, you make an excellent point regarding me needing to get away by myself for a few days or so. Also, great point regarding if I were to get ill which is a major concern of mine too. I just assumed it meant I likely would have to bring my mom with me on vacations honestly and that it would be a major life change in that aspect for me. But the flip side is that I 'think' I'd want her to come with me because I fear her health could decline further at any point now and I'm basically trying to salvage what I feel could be the 'last years to form decent memories together'. I could bring her home and only have a year or two before something else tragic happens and she can't live with me or vacation with me or heck, for I know..even half communicate with me. I think I'm romanticizing trying to 'capture' some last positive memories with her that include doing things together and getting her to do things she likes 'while we both can'.

Her nursing home here in the US is over $7k a month and the last caregiver that came out to see her and taker her out told me she'd been doing caregiving for over 10 years and had 'never seen anything so horrific'..that it was the 'bottom of the barrel and I needed to get her out as soon as possible; that no one should be placed in a so-called facility this sub-par'. I already knew it was bad, but the agency workers who I pay to come out are pulling me to the side asking how soon I'm going to find a way to get my mother out of there.

We started the paperwork for disability and Medicaid 8 months ago. In the state we're in and on Medicaid, she's not going to be placed in any type of 'nice' nursing home, I think we can all agree on that.
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Do NOT bring her home with you. That would be bad. If you didn’t get along pre-stroke, you aren’t going to get along Post-stroke.

My MIL has the same mental issues your mother has and is a changeling. She can be pleasant if she wants something, but once she has it, the inner demon returns:

My husband knows this & refuses to have her in the house. Keep her at arms length and be brutally honest with her. That is the only way towards understanding.

Continue to bring what she needs, but she must be told right away that the facility will discharge her for failing to improve & she can’t come to you.

Your physical and mental health will depend on having your own space and limiting the impact she has on you. Blessings on you. It takes strength and fortitude to withstand to onslaught.
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PsalmsTestimony Dec 2022
If she stays in the nursing home I see no need to live near her. I can't stay in this city she lives in (or the state for that matter) long term.. I hate it. I moved here to be closer to her while we 'figure this thing out'.

So far, the only resolution I have for bringing her home is moving abroad as that was my plan before her stroke as I wanted to retire abroad. I just thought I'd be moving alone. But I found 2 agencies that will place a live-in full time caregiver. The agency handles all of the legalities and taxes, etc. They place a backup when the live-in is sick, off, etc. Using them plus adult daycare locally was my plan. Otherwise, I can't bring her home in the US because I can only afford 4 hours of care daily and that's not enough. I need a live-in. I didn't think this was such a horrible idea. The 'bad' days with my mom are only about 15% of the time. Yeah, she's likely going to progress at some point one day and things may/will get to be so that she can't live with me anymore. Right now, while she can still eat on her own, converse with me, remember things, has the desire to go places, have hobbies, etc., I figure is the best time for me to try to be close to her and do some, say, 'bucket list' things we had on our list together. Because I don't know how much time we'll have left now to do that stuff as things could get worse at any moment. I can't even spend the night with her with being in the nursing home (they said because she's part of a charity program that pays for her bed, my mom can't leave the facility unless I pay $250 a night to 'hold her bed' and if you could see this place...I simply refuse to give them that kind of money).

Anyways, I probably made no sense here whatsoever. I'm just venting (ranting really). The point I was going to make is that if she's going to stay in a facility in this area then I might as well just move ahead with my plans to leave the country..alone. Or at least go to another state I want to live in because here is NOT it and is not going to work..I feel I'm on the edge living here already and it's only been 8 months. And no, I wouldn't move her with me to any other state because I move around the US a bit too much to be placing her based on where I live at any point time.

In short, if she has to stay in a facility locally and doesn't 'come home' to live with me (abroad since I can't afford full-time care in the US), I don't know that I can stick it out and live near her anymore.
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Bringing her home would be an unmitigated catastrophe, so get that idea out of your mind.

Visit her less, once a week is fine. If she calls and whines, just say goodbye and hang up, then do not answer any more calls for the day. If there is a real emergency the NH will call you.
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PsalmsTestimony Dec 2022
I'm not disagreeing with you, however, it is so interesting being on other forums where there are people of non-Western cultures. It's so interesting how in many many other cultures, I'd be getting the opposite advise because it's taboo to leave a family member in a facility, and in other cultures, families are 'so' much closer and really work together to keep a loved one in a home the best way they can. How the elderly parent is not seen as a burden and how much more other cultures will sacrifice (and I'm definitely not saying it isn't terribly hard or pushes some to burn out a bit).

I don't think there is a right or wrong way but it amazes me how many responses I've read in other places from non-Americans that were along the lines of "I took my parent in for 20 years, did back-breaking work for them and was yelled at every day but wouldn't change a thing because in my culture, we take care of our own and it was my 'honor' to learn how to sacrifice for someone who wasn't even that great of a parent to me because it grew and strengthened me."

The one thing that saddens me is how there 'is' no 'it takes a village mentality in our culture it seems. If I weren't so on my own and there was a strong support system it wouldn't be a walk in the park to bring my mom home, but it would be doable and likely some valuable growth and lessons would happen for all as a result of it.

Now, don't get me wrong. I believe there are situations where its likely best a person be in a facility and those situations typically (from what I am reading/seeing) involve severe physical debilitation (for example, 2 person assist for any kind of transfers) and/or severe memory loss (wandering, setting fires, etc.).
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Don't bring her to live with you.

The best present you can give to her and yourself would be to find a facility to move her to that will last to her dying years. Apply for Medicaid if needed. Get her set up so that she does NOT rely on you.

Then after you move her into managed care, go visit her as much as possible. Take her on outings, bring her treats, take her to doctor appointments. Listen to her complaints. If it gets overwhelming, tell her you are going to leave, and leave.

With the stroke, you never know what is going to be next. In my brother's case, having the stroke was the easy part. Life after the stroke was hard. He was not allowed to drive; he was not allowed to cook; he didn't have the stamina to walk around Costco; he couldn't drive one of the wheelchair carts either. He couldn't necessarily eat or go to the bathroom or shower by himself as his body would occasionally "lock up." As his brain started to heal itself, he went through a time when he was constantly nauseated. Yes he was grouchy. Who wouldn't be. He absolutely hated the fact that he was dependent upon someone, or anyone all the time. However, that was his future.

As a caregiver, in order to give your best care, you need to be able to walk away when frustrated or angry, and then bounceback. You cannot do that if the person is living with you without destroying yourself. In addition, if you should get sick, you will need a backup plan for care.

The best gift you can give to your Mom and yourself is to research and prepare and guide your Mom to live in managed care while you are able to make a careful, rational decision. Be warned, it takes a minimum of 2 months for anyone to get used to the new living situation.

However, it sure is better than the nagging, the constant fights, the putdowns, the accusations, and the negativity that just occurs when a person is just not feeling good.
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PsalmsTestimony Dec 2022
I did post a few minutes ago to another poster that I can't live in my mom's state forever. I moved here when she had the stroke and I hate it here. My original plan pre-stroke was to move (and to thus 'settle') abroad. I like traveling and moving around/experiencing new places.

I had gotten a quote from two facilities abroad that can place a full-time caregiver in the home. They provide backups. Doing that plus adult daycare was my plan. If she stays in a facility here, there won't be a 'visit her all the time option' because I'd eventually have to move away from this place. I was born/raised here, have my own traumas associated with having grown up here, and never thought I'd be living here again. She can stay here; I cannot. And even if I don't get to settle/retire abroad and I instead end up living in another state, no, I wouldn't move her to another state. Because I move around the US too much to be moving her around the US with me.

Medicaid and disability were applied for 8 months ago.

Excellent point regarding what happens as a backup plan if I bring her home and I get sick; it's a real concern.

I'm sorry what happened to your brother. How is he doing now?

I hate what has happened. I've been trying to be more positive lately but at the moment all of this just sucks and what I hate the most is having to have moved back to my home state. I know God probably wants me to just be patient and 'still'..focus on gratitude right now and be here for my mom, and I'm trying to do that, but I don't know how long I can last here or be 'chained' to this place which the whole being 'anchored' to a city (as a life-long single person and renter) has always been one of my biggest anxieties.
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PsalmsTestimony: As your mother suffered a stroke, her brain does not possess the capacity for logical thinking.
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PsalmsTestimony Dec 2022
Idk if you saw my post about how pre-stroke my mom had been living in a house with no running water for over a decade, and was squatting there for years because she'd foreclosed on the property and not told anyone/it took years for her to be evicted, but...

Yeah, I've never known her brain to function logically.
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You are doing a great job. But don’t take on a monumental task you can’t finish. Sorry she does not like it but a care facility is the best place for her and you. You have a life to live so do not give it up. You can still be the good daughter but do not give up your life. Financially their are resources for her just do not sacrifice yours you will need them in the future for yourself.
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I've had a similar situation with different details. Here are some things that helped me. 1. Counseling for me regarding our relationship and boundaries. 2. Decrease your visits--don't jump when she says to. Pick a day/time that works for you, and let her know that's when you will be there. If she asks/demands something, take a note of it and tell her you are coming on x day and can't come earlier. 3. Obviously it it is a true medical emergency, your plan will change. 4. You can only control YOUR actions and speech. 5. If she gets nasty, calmly leave. "Mama, I'm not staying if you are going to talk this way."
No, this is NOT easy after years of conditioning to be a people pleaser or avoid conflicts. It is worth the effort for your mental health. P.S. My mom now thanks me when I bring something for her. Best wishes!
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PsalmsTestimony Dec 2022
I just recently started up therapy with my former therapist. We had a talk about me moving abroad and moving my mom in the home with me abroad. I found 2 agencies abroad that can place a full-time 'live in' caregiver in the home. They handle the taxes, legalities, etc. Doing that plus the use of adult daycare was my plan. Because here in the US, I can only afford 4 hours of care daily and that would never work. A live-in is best 'if' she were to come home.

My therapist said she thinks its a great idea. She complemented me on my ability to find a good solution, and one that doesn't hurt me 1. financially (since my mom's disability will cover most of the live-in care), or, 2. physically (since the caretakers would do the majority of the care and do it full-time). She thought it was a great compromise to keeping her in the current nursing home that has bugs in the bed, where she has had unreported falls/missed meds, the staff is mean, etc etc. The therapist agrees that my mom won't likely find a good facility being on Medicaid and me not being able to private pay for a nice facility here in the US.

Regarding boundaries, my counselor and I talk mainly about how I just need to 'walk away' and 'not to get upset' because its her illness talking. Wish I knew how to do that..I mean I 'have' done it before, but I keep having my 'moments' where I just break and go off on her. I don't know if I will just naturally get better at this over time? Coincidentally, my mom was so nasty to me the other day when I was taking her out shopping that I left everything in the store, drove her back to the nursing home, and hadn't talked to her since. I may just stop doing her laundry (fine-the nursing home can do it like they do everyone else's..and she will most definitely lose most of her clothing but it is what it is)... and I'm going to cancel at least a month of her 'outings' through the agency I hired. Maybe more. I may not even go up there to visit on Christmas. This time of year has always been CONSUMED with emotional outbreaks from her for yearssss and maybe, just maybe this year I'll skip it altogether. We shall see.

Thanks for the boundary suggestions. My mom already thanks me a TON and is over appreciative most days honestly...it's just that the other 10-20% of the time it's an 'about face' and she turns in this raging complainer who says I 'don't do anything right', I 'hurt her on purpose', I can't tell her anything because 'look at you-you never even were able to have any kids of your own', and how I need to understand how she's tired of how everyone around us looks at me like I'm crazy because 'no one likes me'. It's exhausting.
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After my mom adjusted to the nursing home - about 4-6 months - she was loving and affectionate toward me in ways she’d never been. She lived for another 12 years and I’ll always treasure the relationship we had while she was there. Dementia can do wonderful as well as awful things. Go easy on yourself. You made the reasonable decision to place her and no need to revisit that.
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PsalmsTestimony Dec 2022
"...she was loving and affectionate toward me in ways she’d never been."

That is great. Not gonna happen over here though, ha.

I mean, my mom is super super grateful towards me the vast majority of the time. Loving and affectionate is not in her nature though.
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" I just don't know I can take her in and continue working while dealing with so many of the personality/relationship issues on top of what's needed to just provided daily care for her as a stroke survivor"

You answer your own question. " I just don't know . . . "
Don't bring her home. If you already don't know, then you don't want to wait until she's home to figure it all out.
Get counseling from social worker, therapist.

It will be too much for you to handle - to care for yourself as well as her.

Gena / Touch Matters
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PsalmsTestimony Dec 2022
I had someone who took their mom in alone for year to be a caregiver tell me they wouldn't have traded it for their world and that I won't know unless I try. That she doesn't have to stay with me if it doesn't work out although it would be hard to place her. That there's always ways to get her into a place if the home thing ended up not being best. So I don't know I necessarily agree that it's a bad thing to 'test it out' because 'I don't know' how it's going to go..not knowing how something will go is not a good reason to avoid something else I wouldn't have learned how to drive or hold a job or move states, etc etc etc. Just challenging the rationale there.

Every individual circumstance is just so different - my mom can feed herself, talk/communicate, can transfer into the bed alone. Doesn't have memory loss. Is fairly young.

HOWEVER - please don't misinterpret what I'm writing as though I'm definitely going to bring her home though!

I just recently started up therapy with my former therapist. We had a talk about me moving abroad and moving my mom in the home with me abroad. I found 2 agencies abroad that can place a full-time 'live in' caregiver in the home. They handle the taxes, legalities, etc. Doing that plus the use of adult daycare was my plan. Because here in the US, I can only afford 4 hours of care daily and that would never work. A live-in is best 'if' she were to come home.

My therapist said she thinks its a great idea. She complemented me on my ability to find a good solution, and one that doesn't hurt me 1. financially (since my mom's disability will cover most of the live-in care), or, 2. physically (since the caretakers would do the majority of the care and do it full-time). She thought it was a great compromise to keeping her in the current nursing home that has bugs in the bed, where she has had unreported falls/missed meds, the staff is mean, etc etc. The therapist agrees that my mom won't likely find a good facility being on Medicaid and me not being able to private pay for a nice facility here in the US.

Are you saying that you would also advise against the above plan^?
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Do not move her to your home. Caregiving for someone you get along with is difficult. Caregiving for someone you don't get along with is sheer hell. She is unhappy with everything that has happened to her over the past year...losing her home, now losing her ability to care for herself. These things are awful and would be difficult for anyone to bare, but you can't fix this. Sacrificing your life as you know it will not make this woman happy and and it sure as hell won't make you happy. Help her with what you can, visit her when you can, and leave it at that. If she continues to be hateful, remind her that you have never taken care of a stroke victim before and you aren't volunteering to be her kicking post, so knock it off! Then you need to start training her. When she says something hateful, just smile and tell her you'll come back when she is in a better mood. She'll eventually get the picture.
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PsalmsTestimony Dec 2022
If she stays in the nursing home I see no need to live near her. I can't stay in this city she lives in (or the state for that matter) long term.. I hate it. I moved here to be closer to her while we 'figure this thing out'.

So far, the only resolution I have for bringing her home is moving abroad as that was my plan before her stroke as I wanted to retire abroad. I just thought I'd be moving alone. But I found 2 agencies that will place a live-in full time caregiver. The agency handles all of the legalities and taxes, etc. They place a backup when the live-in is sick, off, etc. Using them plus adult daycare locally was my plan. Otherwise, I can't bring her home in the US because I can only afford 4 hours of care daily and that's not enough. I need a live-in. I didn't think this was such a horrible idea. The 'bad' days with my mom are only about 15% of the time. Yeah, she's likely going to progress at some point one day and things may/will get to be so that she can't live with me anymore. Right now, while she can still eat on her own, converse with me, remember things, has the desire to go places, have hobbies, etc., I figure is the best time for me to try to be close to her and do some, say, 'bucket list' things we had on our list together. Because I don't know how much time we'll have left now to do that stuff as things could get worse at any moment. I can't even spend the night with her with being in the nursing home (they said because she's part of a charity program that pays for her bed, my mom can't leave the facility unless I pay $250 a night to 'hold her bed' and if you could see this place...I simply refuse to give them that kind of money).

Anyways, I probably made no sense here whatsoever. I'm just venting (ranting really). The point I was going to make is that if she's going to stay in a facility in this area then I might as well just move ahead with my plans to leave the country..alone. Or at least go to another state I want to live in because here is NOT it and is not going to work..I feel I'm on the edge living here already and it's only been 8 months. And no, I wouldn't move her with me to any other state because I move around the US a bit too much to be placing her based on where I live at any point time.

In short, if she has to stay in a facility locally and doesn't 'come home' to live with me (abroad since I can't afford full-time care in the US), I don't know that I can stick it out and live near her anymore.
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Don't move her out of SNF especially if she Isn't Physically Capable of walking and is Incontinent . Find a better SNF You Can Go on YELP and Look up SNF and also Propublica Has a data base from Medicare on Patterns of neglect - Thats How I Found a Good Place for My brother By reading reviews from YELP and Propublica . She Needs professional Help and a Nursing staff - Hopefully where ever you find has a Good social worker on Board . Also go to the Local senior center and ask them " What Nursing Homes they recommend ? " Call them and see if a bed is available and then go take a Tour and speak to whomever Is in Charge at the office .
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PsalmsTestimony Dec 2022
Thank you SO much for the recommendations regarding Yelp and Propublica. Never heard of Propublica, but also not sure why I never thought of using Yelp yet.
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Look, we appreciate that you reached out to Our Forum for our advice, and we are all trying our best to provide ideas.

It's never a good idea to bring your Mom into your home with so many responsibilities caring for her that may burn you out with your LO. Leave her in the nursing home where she is for her care.

And you don't have to visit her as often as you do. The staff is already caring for her. You can come as a companion, instead. That's what a facility that is so expensive is for. Apply for Medicaid to fund her care. That's what it is there for. Her Care is beyond what you can handle, so caregivers will give you respite not to be guilty for. If you cannot adjust to your mother's or your situation, it may be time for professional help to cope with the challenges.
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PsalmsTestimony Dec 2022
If she stays in the nursing home I may just have to still move on with my plan of living/settling/retiring abroad because I moved to my mom's state to be close to her while we 'figure things out' but there is no way I can live in this place full time..I absolutely cannot do it and don't know how much longer I can live in this place.

Now, my therapist says the plan I had of moving her abroad with me into a home where its affordable for full time 'live in care' is indeed my best option so she thinks its a great plan, however, of course, I'm no fool so I do solicit advise from people like those that post here because they're been there and will have a totally different perspective.

Medicaid and disability were applied for 8 months ago.
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I've had my mother living in my home for the last 5 years. I've been caring for her in some form or fashion for the past 16+ years, since my father died.

My mother and I are as different as day and night and were never particularly close for various reasons. (When I left home for college I could not for the life of me understand why so many of my peers were homesick.) While growing up, everything in our home was all about my mother.

Having her living with me has not improved our relationship and has made my life very difficult in many ways.

My mother is very good at finding fault with almost everything I do. She has wrecked the peace in my home.

I can pretty much assure you that whatever your relationship is with your mother right now, will be what you get when you move her in with you, and it may very well get worse. You'll get the same person, only it will be in your home.
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PsalmsTestimony Dec 2022
I agree with you. I have no expectation our relationship will improve.
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I have not had this exact experience but I will tell you mine: My Daddy has ALZ. He argued with me but I lied to him to get him into a group home. He would have flourished there if he did not have such an illness. He healed from his surgery with flying colors, he ate good. However, his sickness was bad and he declined. I was able to visit him and not have to argue with him about anything. I let the staff argue with him and be the "bad guy". I just visited with him and was able to love him. If you are able to get her into a group home or somewhere that you can just go visit her would be your best bet. As others have already suggested taking her home will only get worse, you will continue to argue, she will only get to you and you will be pulling your hair out! I don't think you want to be bald : )! Reconsider about taking her home.
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PsalmsTestimony Dec 2022
I am sorry to hear that your dad has ALZ. That is SO so very hard and heartbreaking.

I must say, I've already lost a lot of hair this year.

Also, if my mom stays in a nursing home here, I may just have to still move on with my plan of living/settling/retiring abroad because I moved to my mom's state to be close to her while we 'figure things out' but there is no way I can live in this place full time permanently..I absolutely cannot do it and don't know how much longer I can live in this place.
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I'm embarking on a similar journey. My mother was psychologically and physically abusive. Eventually, I was apprehended and ended up in homes that were difficult situations. It took me many, many years to find my feet and not be depressed and suicidal all the time. I finally got to university in my late thirties. But I was honestly about the time I turned 60 that I got to be a lot better (and I got a tattoo to commemorate it!). At that time, I also realized that the less I had to do with her, the better it would be for me.

I've always been kind to her. I've always helped her a lot, even though she has never been either of those things for me. She had the same opportunities I did, to seek some serious help, and try to do better. But she's a narcissist, through and through - manipulative, mean, greedy...

I got some good advice the other day: "Don't spend any more of your own money!" You sound as though, like me, you can't afford it. I'm going to take that advice as best I can.

Also, I have dealt with her needing a lot of help when I was working, and it was impossible for me, a nightmare. I urge you to be very realistic about what that would look like, if she was in your home.

Sometimes, when I have managed to distance myself from how cruel she has been and can still be, I remember little things she did with me when I was a little girl (like going to the fair, etc.) and that she is mentally ill, and feel sorry for her. But then I remind myself that she has always done exactly as she pleased with no regard for anyone else, including her children. That's why everyone around her is also MIA, and I'm left to deal with this - the same with you, no doubt.

I think you and I need to steel ourselves and make sure that this woman who has already been so harmful in our life doesn't get the chance to ruin our later years as well. Because they will, unintentionally or otherwise. However hard it will be for us to do that, our mothers had their chances by the truckloads and they squandered them. I'm not interested in punishing her or being cruel to her. But she has already made enough of my life very, very hard. I'm not going to give her my later years as well.

I'm beginning to decide what I am willing and unwilling to do (boundaries). She's made her choices. Those choices have brought her to where she is. She's had a great deal more in her life than I have in mine. I'm not going to let her make me feel guilty.

I hope that you do not make the choice to move her into your home.

I hope we both find peace with our decisions.

Best regards,
Pag
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SnoopyLove Dec 2022
Very inspiring answer. Lots of wisdom here.
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Has anyone on her medical team explained to you about emotional lability after a stroke? If not, look it up. It explains why stroke patients can't control their emotions. Sometimes they were so ornery to begin with that there's no hope after a stroke for normal interaction. Counseling won't help that; she'll think she doesn't need it. Medication might mute lability, but then you'll have to supervise carefully to make sure she takes it, and she may not like the way it makes her feel. As in, "I'M NOT GOING TO LET YOU TAKE AWAY MY PERSONALITY," which my family member said to me. Can you cope with that? Oh, and it might be suggested that the two of you participate in a stroke recovery group. That takes some time, and it didn't work for me. Too many reminders about the decrepitude that would follow after the next stroke happened. Also, I want to pass on what the social worker said to me as I was preparing to take my stroke victim relative home for home care: "Your life is over. You're a caregiver now." Just don't.
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PsalmsTestimony Dec 2022
She's in a charity bed in a nursing home that misses her meds and doesn't report when she has a fall. I've been trying to get them to get maintenance to take care of a cable wire installed in the ceiling that currently hangs loosely straight down into HER SINK..ain't nobody there talking to me about lability lol

But in all seriousness, my mom won't take any meds related to mental health. She wouldn't take blood pressure meds although I begged her for years when she was running 220ish over 170ish for 'decades', She's just taking them now because she's scared she will die..or have another stroke.

'If' she could get in with a good therapist and only over time..maybe she'd take additional meds.

I got her into a stroke recovery group like 7 months ago; she attended the first call because I went to her and logged into the call/meeting. She hasn't attended any since although I have called her several times to tell her it's time, and walked her through how to dial in, etc. She said that 'it's not for her' after the first meeting. Based on what you wrote maybe we're not missing anything..?

I take it you regret bringing your stroke victim relative home? Was it a parent?

You may have also seen my various other posts here where I mentioned that my plan was to take my mom abroad and pay for full time live in caregiver there..I take you disagree with that plan? Seems everyone is saying there's no viable options for care in the home. I have talked to maybe 2 or 3 people who did it with full time help and stated it was still extremely challenging but that they were glad they did it because their parent thrived so much better at home. However, here in this and other forums it does seem like 99% of people say 'no way don't do it'.
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If you already argue a lot do NOT take her home to your house. Recipe for disaster!

Since she's so difficult, have you looked at grey rocking? Where you learn to not engage or respond to her b.s.? You're not going to change her, so you have to change your reaction to her. Set some reasonable boundaries and if she crosses the line you can warn her and the next time leave, "I'll come back when you're in a better mood".

If you try to do something for her that obviously needs doing and you want to do it, you could just say something vague like "oh, that's OK, I'll do it for you this time mom" and proceed with what you're doing. If she fights it again, stay calm and say "OK, maybe another time".

Don't stay too long as I bet the longer you stay the more nasty she gets. Short and sweet. Do what you think needs doing and hit the road.

I'm sorry that the facility is not the greatest, not by a long shot. Have you looked into getting her on medicaid so she can hopefully get into a better facility?

Best of luck.
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PsalmsTestimony Dec 2022
Excellent post. Thank you SO much for addressing my question about how to improve interactions.

My mom's sister has NPD. I just recently 'pinpointed' this after yearsssss of dealing with the most dysfunction in the family from her. Funny enough, I started 'grey rocking' with her..actually I'm mostly 'no contact' with her now. Interestingly enough though I did not ever think to grey rock with my mom. I 'kinda' did with her last night though..she was asking me if I needed laundry detergent and I said 'no, the laundry people provide it' (I use an app for her laundry). She said, 'don't THEY need it' and I said 'no'..then she asked again and I went totally 'blank'...no response, went dead in the face and stared blankly at the tv. Surprisingly ended the entire 'laundry' interaction lol.

Her medicaid is pending so I'm 'hoping' to get her into a better place once it comes through but honestly I think with Medicaid beds being so limited, it might be hard to get her in anywhere decent..we're already in an area with not the greatest facilities which is why I mentioned in another post below that I'm considering an in-home caregiver (potentially by even moving her with me abroad..long story and somewhat far-fetched of an option, but still keeping it as an option nonetheless).

I do want to emphasize that although we never got along great, I'm used to it. Although she is being nastier than normal, I do 'think' I have the capacity to learn to overlook it, as its only I would say...maybe 10% of the time or less. Of course, I expect others to chime in and say 'it'll only get worse' and 'that's still too much to deal with' etc etc, which would be valid points.
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Please, keep her in the nursing home. They have the skills and facilities to care for her.
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How long has your mother been in the substandard NH? Why haven't you already moved her? Is it because it's the only place the charity group could place her?

Please keep us updated on what the hired social worker says when you start meeting with them on December 19.
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PsalmsTestimony Dec 2022
She's been in the substandard SNF for about 8 months. You are correct that I have not moved her because of the charity program that is currently covering her care-extremely limited beds under the program that was associated with the hospital she was discharged from back in early May.

I can definitely come back and provide updates as I start working with the hired social worker.
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"Counseling is in order for you so that you can begin to give yourself permission to live your life".

This was written below from Luta65 & I think it very important & needs repeating.

Stroke is a brain injury, your Mom's thinking is beyond your control.

Only your own thinking is.
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PsalmsTestimony Dec 2022
Yes indeed.

I was in therapy but I discontinued it months ago so I could better afford to pay for the agency care (that comes out once a week to take my mom out). I may try to go in for a few sessions..I have been struggling a bit with all of this lately.
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You are doing an amazing job. Visiting, arrange social contact & emotional support.
You are finding your role as Mother's adjusts to her stroke - a life changing event.

Three things that helped me.
1. Stroke Survivor. That term. That surviving a stroke is itself a big deal.
2. Recovery. That it's so much better to think of this as a journey. A new stage of life - rather than total restoration of skills/ability. There is 'before' the stroke, there is stroke survival, there is recovery, which is the 'new normal'.
3. Advocate. Caring for someone does not have to mean doing everything, or doing the hands-on, or being their aide/therapist/driver. As you have found with arranging an agency to take Mom out, you can ARRANGE her care without having to do it all yourself. You can speak up the the NH staff if things go wrong, you don't have to work there & do it all yourself.

I'll add another point.. a real blunt one.. if you take her home, with such high care needs (physical, mental, emotional) & attempt to do everything yourself you risk losing your life. From having zero of your own life left as her needs drown out yours from literally dying of stress. Seriously.

Congratulate yourself for what you have done. Be kind to yourself as you adjust too, you are a stroke survivor in a way also.
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BurntCaregiver Dec 2022
@Beatty

You speak the truth. I handled 'Code Brown' almost always on my own for 25 years in homecare. It's too much much for one person to handle. It really is. My body is shot from so many years of transferring and dressing clients. Changing diapers and repositioning.
I will say from experience that when a person becomes incontinent they should be put into facility care. I mean really incontinent. I don't mean a grandma that tinkles a bit in her pull-up because she had ten kids and maybe doesn't make it to the toilet fast enough every time.
I mean when a person is diaper dependent peeing and crapping themselves because they cannot get to a toilet or because htey have dementia to the point where they aren't aware. This is when it's time for placement.
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Your assumption that no SNF would be as good as home care? Wrong. Home care can be a nightmare. It’s not just God testing us, like raining locusts and sending Babylonians to attack our tents. It’s more like walking all day every day for twenty years with a sharp stone in your shoe while your loved one vomits on your carpet. Plus trying to figure out how to dispose of all the smelly Depends that take up most of the garbage can. At SNF they have a team of professionals. Good luck, but it would be great if you’d learn more about what SNFs could do to benefit both of you rather than condemn them prematurely.
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Beatty Dec 2022
I can tell you that cleaning up a 'code brown' in a facility: with a team of 2-3 to transfer from bed, to toilet to shower to hose down, bag up soiled clothes, re-dress in clean items & paging a cleaner to mop the floor is WAY easier than transfering & cleaning up a person in a home environment (even with a helper) as supplies are not right to hand. Then you deal with the floor & furniture yourself. 15 mins vs 1.5 hrs.

Been there, got the t-shirt as they say.
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Your real question was a bit buried in the text, but it’s “Is there really anything I can do better or do I simply need to adjust my expectations”. The answer is almost certainly “I simply need to adjust my expectations”.

The reason why you keep getting ‘wrong’ replies is that so many people have gone through the same thing, and have already come to this conclusion. A mother who has been snarky for a long time, is likely to get worse whatever you do. Also whatever a counselor tells her – most likely just an expensive way for her to complain about you.

The only thing that seems to work, ever, is to walk out when you don’t like her behavior. And that depends a lot on her brain. It’s ‘stick and carrot’. If she realises that she has a motive to treat you well, it’s possible that she will improve. Otherwise, forget it.
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CTTN55 Dec 2022
"Also whatever a counselor tells her – most likely just an expensive way for her to complain about you."

So true! When my mother's PCP refused to prescribe anti-anxiety meds for my mother, I considered the psychiatrist/therapist route...but only very briefly. Getting her to and from those appointments would be on me, and then I'd have to sit around during the 45 minutes of a therapy appointment while she probably complained about ME? No, thanks.
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Rremember if she is in a facility and her behavior is out of control you can leave. If your mother is living with you then you can never leave. She will be in your face 24/7. Would you be able to handle that? Can you imagine her screaming at you multiple times a day while you bathe her, try and get her changed, feed her, etc, etc? I had another answer below too.
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PsalmsTestimony Dec 2022
I did also see your response below. Correct that Jesus never cared for a dysfunctional mother.

I am just trying to reconcile how 'if" I am indeed able to provide safe, live-in care for my mom through use of a live-in caregiver versus her being in a SNF (which let's face it...none of them would be as comfortable/good for her than receiving care in the home), would God really want me to leave her in a SNF?

I don't have the answer to that question but it is what I think about most days. I am not able to reply to the other poster who had a good response about the Christianity stuff (there is no reply button there for some reason), but if they read this post I will say this to them - that I really do get everything they've mentioned and no, I would not say that people who have 'put' others in SNFs are not Christians. I would say that the scenarios are 'very' very much individual and that of course, if one 'cannot' provide the care safely/financially/etc then the SNF is best. Again, *I* just question that for me in my situation, why a SNF is best for my mom if once her disability comes through its enough to pay for a live-in caregiver in the home? What would be my rationale to leave her in an SNF under such a condition? It seems the only rationale would be because I don't want the sacrifice/suffering 'dealing with her' causes to me, and I feel like that's 'not necessarily' the best way to go because in reality, God is way more interested in our character than in our comfort which is exactly why he places us in scenarios where we have to sacrifice and suffer because its in the actual suffering that we grow. (For a Bible reference-see the story of Job and all of his suffering. For a real life reference, I see how much patience God is 'trying' to build in my with every argument I actually 'do' avoid with my mom-I am being tested in ways I have never been tested and personally see him growing me in my interactions with her..albeit not in a fast or easy way.)

I hope I am making sense here (probably not). In short, the Christian part of things plays a big role in my decision as I am looking to God for guidance on what to do. But trust that I am no fool either and I am carefully assessing this situation from SO many angles right now - as I've mentioned in other posts below, the 'next' likely thing to actually happen is to put my mom in another, better SNF as soon as possible.

And you're right - no, I can't imagine her screaming at me multiple times a day while living with me. Sounds like a real nightmare. The part I guess I'm not heeding as much is how bad things 'could get' now that she's had the stroke. In other words, the reality of a potential decline as the years go on. That is worth a lot of pondering on for sure. Because the arguing, for now, is not every visit by any means. She's usually nice or sad..and typically extremely grateful and sometimes cheery. She's 'usually' 'her version of normal'...it's just that her bad side is now the worst I've ever seen and I get the brunt of it so it's reallllly really hard on those days.
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