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.
Please speak with the facility and tell them she has no place to go and she doesn't have anyone to help her. She is an unsafe discharge and needs to apply for long term Medicaid.
She will devour you, your heart, spirit and soul. She is showing you now what it will be like. Nothing you do is enough for her, everything you do is wrong, everything you don't do is wrong, please DO NOT make that your reality 24/7/365 for years, maybe decades. My grandmother lived for 12 years after her stroke, your mom is younger then she was so your mom could live longer.
As hard as it is to place her, it will be a thousand times worse if you try and be her caregiver in your home. Shut your ears when she starts in on you for NOT taking her in. What she wants you to do for her doesn't matter. She needs a village and you know she will get ugly, hateful, nasty and vile when she finds out she doesn't get to suck your life force and devour you, be prepared to hang up or walk away when she starts in.
I am freaking out with the thought you will give this a try. Please do not, you matter, please don't give her the opportunity to destroy you by bringing her home, please!
To add, she can not be left alone, ever. She can't get herself to safety and that means you could get in trouble for leaving her alone. That in itself should be your eye opener that you can't take her care on. She needs 24/7 supervision and that means a facility, period.
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.
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.
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.
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.
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.
What is best for her is to have a whole village to take care of her and a daughter that comes to visit regularly, whether that is 1x a week or 1x a month or whatever you can realistically manage, I am sure that all depends on her treatment of you. She doesn't get a free pass to abuse you in any way, shape or form because she had a stroke or is mentally ill. No excuse for abuse, ever!
Get with the social worker at her facility today and find her a facility that will take her Medicaid pending.
You do not have to find the perfect facility, you can always move her in the future if the first place doesn't work out.
DO NOT bring her into your home! You would become a total, 24/7 slave to her misery and you can do nothing to alleviate the deeply entrenched web of depression that is her bipolar depressive / deeper depression and other diagnoses.
I would ask you to please read the list of supplies that is provided by the facility and stop bringing her the things that are already part of her care costs there. OK, she likes a certain type of pullups, but the ones they provide are just fine. Instead of bringing her an endless list of basic care supplies, stick to her favorite shampoo, soap and lotion, nothing more. Instead, send her a monthly bouquet of flowers with the money you save. I hope you're not paying out of your pocket for the agency, that should be coming from her estate funds.
Please learn about the NPD and depressive personality and begin to extricate your emotions from the quagmire that is hers alone. She is working hard to bring you down to her level of misery and you're not seeing it. Counseling is in order for you so that you can begin to give yourself permission to live your life.
Please stop dancing to her twisted tune and stop visiting her so much. tell her that the visits only seem to make her more unhappy and it's dragging you down; you have your own life to live.
My Mom, has similar diagnoses with added advancing dementia and I could never live with that illness while caring for her. Mine tries very hard to hide her pain, but I love her so deeply and understand her so well that we've a common language. By my stepping back, she's been able to establish some supportive relationships at the MC unit and I know that she's doing as well as can be expected. My Mom is not an NPD, she has a heart of gold and is kind. Even with that, I could not have her living with me and my family.
PLEASE do not bring her home and lose what is left of your own life. Please begin to limit this miserable contact and endless criticism. Give yourself permission to be happy.
My mom lost her house a few weeks before the stroke. She was squatting in a home she once owned, but she had foreclosed on over 3 years prior and never told me. She'd been essentially living in a house she no longer owned for years in hoarded conditions..it didn't even have running water for over a decade (let that sink in).
She hadn't had a job in years and she blew all the money she got in recent years giving it to others (i.e., church/friends/family birthdays, tipping McDonalds staff), buying gifts for others and shopping for items to hoard at the Dollar Tree. She never made much more than minimum wage but I will tell you that despite all of the things above, she worked a hard physical labor job to keep a roof over my and my sibling's head and food on the table - her mental issues only deteriorated once both I and my brother were officially out of the house. She went 'downhill' every year after that. By the time of the stroke, she had no house, no job, no retirement or income or savings or pension or any kind of insurance whatsoever. She's currently part of a charity program that's paying for her bed in the SNF until Medicaid kicks in.
Now, I was in counseling off and on for years but I stopped it a few months ago so that I could start paying for her agency care.
I am well versed now in NPD (if by NPD you mean narcissistic personality disorder??). I found out about it after I realized her sister (my aunt) has it. My mother was temporarily living in my aunt's house when she had the stroke - my aunt is a NURSE of 30+ years and when my mother exhibited stroke symptoms (my mom's face suddenly fell), the aunt with NPD had her do a 'stroke scale' at her home and because she 'hopped on both legs ok' she didn't take her to the hospital. My family is a mess. But I want to make it clear that my mother has never actually even asked to come home with me. I know she doesn't want to be a burden. But she is 63 and from what I'm seeing based on the condition of the nursing home she would fare so much better at home and potentially have many more years of a much better life than she'd have in the current place she's in.
Let me also be clear though that it's not 100% she will come home with me. I think that she can't unless we have a full-time caregiver in the home with us. I am currently investigating costs for this because right now its much less expensive than paying for hourly agency care daily. I'm even looking into moving us abroad where I've already gotten quotes on 24-hour live-in care in another country that her disability check would likely cover almost 100% of. I'm not taking this decision lightly whatsoever, else I would have pulled her out of the nursing home already. Right now, best case scenario is she just gets moved to another, nicer SNF closer to me next year actually.
Anywho, my original question was asking for advice on the relational aspect of things. Now that I'm in the caregiver role my mother 'seems' to see me as 'the enemy' and argues with me..but with no one else. Literally. So I was asking for advice on how to improve our communications and interactions. Another poster mentioned that there is no room from improvement because her brain is broken...maybe that is indeed the answer to all of this. So then how do I improve? Is it a matter of 'finding a way' to ignore everything nasty that gets said to me? Limiting interactions? I was looking for advice for people who've gone through this type of thing on how to deal. I see that you mention just limiting contact. So..maybe I indeed just have to step away from it all. Sigh
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'.
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
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.