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.
You should not be doing anything for your Mom. The staff should be doing their jobs. You should not need to bring in anything. Moms depends and toiletries should be provided. I left Moms favorite things and the aids never used them. Do not expect them to put lotion on Mom.
How do you deal with this new norm, how have you dealt with Mom your whole life? If she has Bi-polar how did you deal with her mood swings? This stroke did not improve on that. Its not getting Mom to change, its getting you the tools to learn how to let things go and how do deal with Mom. Make believe your an aide and Moms the patient. I would bet in this scenario that you would handle the situation differently.
For now you need to find a way to transfer Mom. She also needs to be evaluated by someone from the outside, for her daily ADLs and her cognitive ability. If it found she needs 24/7, then she may need to stay in LTC. I doubt an AL would take her with the care she needs. By getting her transferred, a lot of what your doing will be done by staff. My Aunt had a head injury and was always mad at my Mom. Dr told Mom because she was the one my Aunt loved. Mom should know everything she wanted or needed. And they get upset when u don't.
We are not therapists here, just people like you caring for LOs. Not saying Mom might get some help talking to a Psychiatrist, she may. I would try that after u get her out of this place. You need a therapist to show you how to deal with Mom. You also, do not need to move her in with you. I think her physical and mental care would be too much for you.
I hired an outside social worker and I start working with them officially next week. I hope they can help with getting her moved to another SNF as to me, that is the likely next step in all of this.
I agree that the staff should be doing their jobs. But when my mom is on Day 5 without a shower or a 'bed bath' and is sick, I just do it. Every time I ask what has to be done so that this happens consistently for her, I am met with blank stares and the response from management of 'well, it's 'supposed' to be happening every x days'...but it just doesn't.
How did I deal with my mom pre-stroke? Good question. I honestly did not see her often. In recent years, I would limit phone conversations when she wanted to talk about 'paranoid' stuff, or argue that 'no one would EVER make her go to therapy or take blood pressure meds'. I think I just in general had a limited relationship with her because after decades I realized we argued too much and I didn't like feeling like I was 'being a worse person' around her sometimes. That was a very good suggestion for me to try to see her as the patient and treat her in that respect.
My mom had finally agreed to see a therapist and psychiatrist months before the stroke..after decades of asking her to go to a doctor (she would not go all her life due to not liking doctors as she was involuntarily committed early in life after a major traumatic event happened). It's so sad she had just gotten a job offer, had been seeing a therapist in the few months before, and even saw a psychiatrist the actual week she had the stroke (the psychiatrist was the 'most recent' person to tell her she 'had' to get on bp meds or she'd have a stroke soon...it was like it was God's last warning to her..but she refused the meds and had a stroke the same week, SMH). Besides the meds stuff, she was actually trying to change for the better.
No one is a mind reader and your mother needs to be made to understand this. Tell her plainly but kindly, that she will have to find ways to redirect her anger away from you otherwise you will stop trying to help her and will cut her out of your life completely. She must also tell you what she needs and when she can do something without assistance.
Under no circumstances should thw two of you live together. That possibility needs to be taken off the table immediately. DO NOT get talked into it and do not think that her disability check coming in will make that arrangement beneficial to either one of you.
When you are visiting your mother and she starts lashing out at you, end the visit and leave. If she does this on the phone with you do the same. End the call.
This is what's will be best for both of you. Your mom should also be getting some kind of counseling too. It's hard when a person has had a health crisis and even harder to adjust to what their new life is going to be.
On another note, I came into Christianity a year or two ago and it really feels to me like leaving her in the nursing home is not what a good daughter would do from the Christian perspective which teaches us to 'honor our parents'. I feel like the reason people give to me to leave her in the nursing home is because things would be easier for me. I have a hard time understanding that rationale because I don't necessarily believe that God wants us to always take the easiest route and the best route often involves suffering. I know I'm going wayyyyy off tangent/off the charts with such a comment but I am also really struggling to reconcile my thoughts on the situation not just as a daughter but as a Christian as well.
I have actually left the nursing home on multiple occasions, one time in which she proceed to yell at me/call me names as I was walking out the door. Luckily I was able to rush out faster and ended up getting out rather than turning around and reacting to what she was saying about me.
I have indeed told her that she needs to find other ways to channel her anger - but I have not told her that the consequence could be me leaving her alone completely. I did at one point tell her that I'd always be there for her, that there's nothing she could do to turn me away because I'm her daughter and I love her and I realize she's not being herself because of what has happened to her. I question now if maybe I shouldn't have said that - as 1. it's not something I could probably actually commit to, and 2. maybe...just maybe she's using what she's been told to her advantage (I don't think so but I can't fathom it and would hate to think she's doing that).
She barged right into the bathroom, without knocking. She NEVER did that before. Then, argued, illogically, why it was perfectly fine to do so.
She didn’t shower. Argued that. This, from the woman who was so very upset when my grandpa refused to shower, 20 years previously.
I could go on and on.
Like in your situation, the arguments didn’t even make sense.
That’s because your mom’s brain is broken.
Even attempting to figure out a way to reason with her won’t make a difference.
My only suggestion would be to try and save your sanity. Limit your visits. Make them shorter. Leave when your mom gets nasty with you. Not to teach her something (she can’t learn at this point. ), but to give YOUR brain a break.
Ok, enough of the rant. Just wanted to emphasize that I 'do' go less than I used to. I also go for shorter visits (I used to stay 3-6 hours 'most' visits) but now only stay that long if I'm taking her out once a week or once bi-weekly.
I am sorry about what happened with your mom. I really am. Dementia sucks and it is so devastating. I have been reading up on it and I'm now so scared my mom has or will get it due to the stroke. Part of me wants to bring her home to try to have 'some good years' left/together in case she goes down that dementia path sooner rather than later (I pray not though). I admit/recognize I am romanticizing the possibility of us working to achieve a semi-healthy life together (albeit difficult for both of us due to her condition). I have not moved her in yet because I am constantly assessing how we are getting along, what she is capable of doing, the cost of care, what she needs, what I want/need, all housing options available to her, what we would need to do in order to get along better (if possible), what resources are there for me to make a home safe/livable for her, on and on etc etc etc. Clearly I haven't made the 'ultimate' or final decision that it's even doable else (again) I would have already brought her home.
Be realistic -- this plan of taking her in is NOT going to work, nor will family counseling work when your mother is brain-damaged from a stroke on top of existing mental illness.
Caring for your mom means doing what's best for her, and that means finding nursing home placement with Medicaid, not taking her home with you. You would be doing the BEST thing for her by ensuring she has 24/7 care in a nursing home, so don't let her guilt you into thinking otherwise.
It will not fix anything.
Why are you even entertaining the thought of her living with you? What do you think it will accomplish? Would it make you feel less guilty or like a good daughter?
Counseling will not help. That is too much to ask of her. It would be like expecting a toddler to do multiplication tables. Her brain is damaged.
My original question was not about where she is going to live. I want to know what I can do to improve our communication and interactions because as I stated in the original post, it is not going well in that department. That is where I am seeking advice/support.
So she was placed in Assisted Living, then segued into Memory Care AL where teams of people were working 24/7 to accommodate her varied needs. Not one tired, burned out "Bad Guy" (ME) who thought she was Superwoman and could Change this Woman From A Tiger Into A Lamb. Not happenin'. Reality check 101.
That's my advice, insight, which addresses your question "asking for advice on dealing with the relational aspect of what is going on for she and I right now. I don't quite understand it and I don't know what to do about it." Strokes change a person's brain into an illogical one that tends to argue EVERY single thing in life and turn even a decent relationship into a confrontational nightmare. It's a situation best left to a village to manage rather than one person such as yourself thinking you have the power to change her. You don't. Nobody does. It's how her brain works (or doesn't work) these days. Sad but true.
Best of luck.
Well I guess this is the cold hard truth I was looking for..
That there is literally nothing I can do..?
:(
Although I will admit she does not argue with anyone else but me. So I was thinking I am the 'bad guy' because she sees me as the person who put her in the nursing home (she's even said this). Even her close friend said she has never seen her argue with/interact with/treat anyone else the way she treats me since the stroke occurred. So I was thinking there's something in our relationship to work out - I just don't know what her problem is with me now. And it's not just me who has noticed it's 'only me' she acts this way around. But if you think it's a broken brain that's the real issue and nothing can be done..I get it. It's just confusing why her broken brain rationally only selects me to be 'broken with'.
Oh well.
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
Post stroke, your mother's abilities are likely to fluctuate according to mood and energy and pain levels on any given day, and that's even before you factor in pre-existing mental health issues.
I can't honestly see how it would be a good idea to place yourself in a situation you can't step away from.
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.
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.