I am struggling. I have introduced you to my mom, Joyce. Mom lives in a long-term care facility with Multiple Sclerosis (M.S.). She is 70 years old, and no one knows how much time she has left with us, mostly because M.S. is unpredictable, and she’s outlived every prognosis ever given. She’s one tough cookie.
If that wasn’t hard enough, Mom has the double-whammy of a progressive physical illness, that also has brain and nerve symptoms that affect her emotional well-being; AND mental health problems. While her official diagnoses have evolved over the years, mom struggles with depression, mood swings, difficulty concentrating, moments of amnesia, poor judgment, inattention, and… sometimes she’s mean.
I said it. She can be mean. Sometimes she hurts my feelings. Sometimes she hurts my kids’ feelings. As they age and as her health and mental health further deteriorate, it’s happening more often. The kids also are developmentally more able to pick up on it, ask questions, and have their own thoughts, feelings and reactions. It has been very tough over the last several months, and we need a plan.
To be fair, Mom is losing her memory. She mixes up who we are and our relationship to her. Today is my birthday, and she wished our daughter a happy birthday. Sometimes she doesn’t recognize me, or she thinks I’m her sister. While hard to accept, this is a normal part of progressed M.S., and we can accept it with compassion and patience. Harder to accept is her tendency to have favorites, to compare one child to another, or to dismiss or disregard one. This pattern is not because of M.S. but instead mental illness. It’s a pattern she’s had for a lifetime and her mother had before her. You were a saint or a demon, perfect or worthless. There is no middle, no gray, no “good enough.”
I knew I’d need to act when I began hearing my son say many of the things I said (or thought) as a child. “Why does she call me the best all the time? Doesn’t she know that can hurt Sissy’s feelings? Why didn’t she get a compliment like that too? She should love us equally.
It infuriates me, and my wife can’t cope with it. I tell her when I need her to come, usually for holiday visits, and otherwise I go with the kids. Yet, I wonder how fair it is to continue to subject them to this.
Here’s what I know:
- My mother is not consciously choosing to be mean
- She may have the capacity to produce a desired behavior in a moment (Please compliment her now!), but she can’t keep it up
- She is otherwise lonely, and most others have given up on her/stopped seeing her
- Her grandkids are her very greatest joy
I also know that I don’t want to see them hurt. For now, I’m explaining it as honestly and plainly as I can, and at least for today, it’s enough. It’s tricky, too, because while much is written about how to support family members with mental illness, I haven’t found much around how to help my children cope with the impact on them. Some of what I’ve found useful is from NAMI, here.
Above all, I want them to know that it is her mental illness and/or her disease speaking, not her heart or her love. I want them to know that they aren’t responsible for what she says, and also that what she says may not be true. I want them to know that hurt feelings are okay, and to talk about them. I also want them to know that everyone in this world has different strengths and different limits, and that sometimes the choices someone makes because of their limits can hurt us.
Perhaps my biggest struggle is this: I want to protect my kids from being hurt, but I also want them to understand that mental illness is real, prevalent, and that those who struggle with it deserve the same compassion, respect and opportunities for love and belonging as we all do.
CT Working Moms 
Thank you again for your thoughts and for reaching back. I am glad you have some fond memories amidst what is hard. It helps to know the M.S. is not “all of them.” It is still hard, and it also sounds like you are grounded, and doing your best. I continue to wish you only the best. Shine on!
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I am 28 and I’m getting married this year. My Mother was diagnosed in 1997 and I’ve kind of grown up with two different Moms. The Mom from when I was little and the Mom that slowly got sicker. MS changed her and her personality. She’s often angry and mean. She gets memories mixed up and it’s really difficult to just listen to her without wanting to butt in and correct her. It’s not really about the memory being right or wrong but more often she recalls things that I did or didn’t do that aren’t true. She obsesses about things that never happened or things that did happen. She picks fights about stuff that happened 10 years ago. She becomes unreasonable and out of touch with reality. A lot of my family has walked away. Some days I want to also. Like you I understand that she doesn’t mean it on purpose. I know that she loves me. She knows I love her. It doesn’t stop her from saying things that are inappropriate or out of line or uncalled for things like “This wedding dress would be so beautiful on you if you lost some weight.” She forgets saying things like calling me an “ungrateful bitch” or telling me it was my fault my parents got divorced even though I know it isn’t true but I don’t and can’t forget no matter how hard I try. She will publicly shame me through social media and make me look like the worst kid in the world and leave out why I yelled at her, hung up on her, won’t speak to her or etc. She has gone through my friends list and contacted my friends and made long sob stories about how poor little her is mistreated by me or that I said I was never going to talk to her again when I was avoiding her becuase she wouldn’t stop arguing with me about details of her divorce or my actions at 13 in response to the divorce and her diagnosis. I’m not perfect by all means but like most kids I acted up when things first got hard and though I’m older and have grown I still have to defend myself and my actions from years ago as though it were today. Some times I wish she’d forget me all together so that I could visit with her without an entire lifetime’s worth of emotional ammunition stored in her brain but I know that would be even worse since she’s my only surviving parent today. She has unreasonable expectations of what I am supposed to do in this situation and it feels like she values herself but no one else. I do try hard not to let her get to me. I try not to react and 75% of the time I don’t but the other 25% I do. It’s hard. I think more than anything I would like someone to tell me that’s it OK to not subject yourself to it. It’s OK to try to protect you and your family’s sanity and feelings. I want someone to tell me that I’m not a bad kid and that there was nothing I did or could do to NOT be in this situation ( “It’s not your fault you and your Mom aren’t close”). I want someone to tell me that she’s so lucky I understand why she is like she is. I want someone to say that there was no way to come out any different. My Mom and I aren’t close. I tell people that when they gab on and on about their wonderful relationship with their Mother and I feel them judge me as though I just don’t want to have a close relationship with my Mom or that I just don’t have any respect for my Mother. I want to be able to tell people that I can’t be close with my Mother but I can’t really go there without a whole can of emotional diarrhea coming out with it because I’ve repressed it all for so many years and I can’t talk about it without being emotional and that isn’t cool when you just met someone. It’s not cool to do with even your best friends because it’s not just a bad day it’s an ongoing battle that won’t end until she’s gone and they get tired of hearing about it just as much as I get tired of dealing. If I say that she’s sick I’d likely have to explain my Mom’s situation and even then people still look at me like I’m just a hard to get along with kind of person but the truth is that I’m not. I have meaningful relationships with people all the time I just can’t have one with my Mother through no fault of my own or hers. There is a lot of misconception about MS and I don’t really understand why. There have been times that I have explained what is happening with her to the fullest extent possible and I explain that it makes her angry and hurtful and people have acted like she was just a bad mother that should be punished and that isn’t right either because she doesn’t do it on purpose. I have lost many friends because they can’t take being involved in the drama and they won’t or can’t understand. My brother and his wife will not put up with it. I don’t blame her but then it means that she won’t be attending and bringing my nephews to my wedding and since my brother hasn’t spoken to our Mother for a while (because she claims his sons are retarded and she reported him to CYS and she claims that his wife cheats on him and that his sons are unlikely to be his/ all of which is not true and though we know it — pulling in Child and Youth services is dangerous even if he and his wife are doing nothing wrong) so I have to worry about whether or not my Mom will be screaming at him “What did I do wrong?” even though we all know what she did wrong–all while I try to say I do. I have to be worried that half of my guests won’t show because there just aren’t many people that can get along with her or understand her. There have been times in the past that no one showed up to events not even her because she didn’t want to see someone and that someone didn’t want to see her and everyone else didn’t want to be in the middle therefore I just don’t get to have support from anyone. People say “Why not just uninvite her” and I suppose I could but this is my Mother, my only Mom and I couldn’t live with myself for not including her in my wedding even though she will more than likely make me sorry that I do.
I am paying for my own wedding. I have not taken money from my Mom or asked for money because she will give it or gift it and forget that she did and come to the conclusion that I stole it from her, I borrowed it and am not paying it back like I promised or she thinks I asked for it when I didn’t and she’ll tell my step dad that I made her give it to me. She got mad at me and usually when she does for my whole life, she will take something away when she’s mad. For instance she will withhold love or uninviting me to family vacations or holidays or something just because she’s mad at me for reasons that no one even knows. The most recent thing was taking away money for my wedding that she never planned on giving me or that I never asked for and that she wasn’t expected to contribute. She did it publicly on Facebook making me seem like I had been demanding it. It hurt that she would say she wouldn’t give me a dime because it’s my wedding a happy event that she was claiming to be a circus and since I was such an ungrateful daughter I wouldn’t get what she gave to my brothers for their weddings and it was irritating because even though I know most of my close friends and family know she’s sick there are plenty of people who don’t know us that well that are out there thinking that I was in fact an ungrateful person. I was not spoiled, I went without a lot growing up and more specifically when I moved to another state with my Dad after their divorce when my Dad took care of me because my Mom couldn’t. I have lived in extreme poverty. I have worked hard and my soon to be husband is supportive and we rarely need help (we certainly don’t ask help from her because she’s sick and can barely care for herself) so I don’t like her calling me ungrateful for never saying thank you for all that she does for me (being not much at all/for instance I call and ask for money for shoes for gym class as a teen and she sends me a pair of middle aged woman’s boots and I cry because they weren’t what I needed and asked for and I wouldn’t be able to wear them with anything since they aren’t age appropriate).
You aren’t a bad person for not being able to control what she says. You aren’t a bad person for knowing she’s sick and still being unable to be around her or let her into your life. It’s OK to protect your sanity/feelings/life/kids from your sick mother. What you are doing is both honorable and amazing when you stand by her despite all the chaos.
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Veronique, I appreciate you sharing your story. More than anything, I hope you are sharing with yourself the same powerful and true words you ended your comment to me with. You aren’t a bad person. It’s okay to protect your sanity/feelings/life/kids; and being there for her is amazing and wonderful.
That being said, please know it is also okay to set limits on what you’ll tolerate. You can cut a phone call or visit short if you’re insulted, you can decide you won’t communicate through social media, you can think about what limits you can set that you can also live with. I am sorry that the tension her behavior has caused is bringing so many difficulties into planning what should be a joyous and amazing upcoming event. For that, congratulations, and I wish you great joy in your marraige!
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Thank you so much Sharlene! It’s so hard to find someone who understands completely and to hear someone say the things I feel and understand them at the same time. It doesn’t happen often. I was having a rough few days with her and still am but I find comfort in your story. I found your story by searching “My Mom has MS and it makes her mean” which is something I search when I feel guilty as though maybe I just don’t know how to handle her and maybe I’m not really a good kid. So many people react to my family issues like I’m an alien or my family is just crazy or my Mom is abusive and I should just walk away and never look back but I know better.
They just don’t know what it’s like to have a parent with MS. There were once upon a long time ago, really normal days and a regular childhood that slowly progressed into a huge mess with divorce and disease. I wouldn’t even doubt that the MS had to do with the divorce of my parents. My Dad said my Mom changed after she had me (I’m the baby of three) and I read that sometimes childbirth can cause an episode so it makes sense. It’s not always bad but it can get out there and obviously the older she’s gotten the worse it gets. I’ve learned to be more open about it and to let people in my life know what to expect and it helps but it doesn’t keep people from distancing themselves from me and it doesn’t mean that people understand.
I saw a lot of problems and questions that we have within your story and it really helped me feel comfortable about some of the choices and plans I have made in continuing my relationship with her and some of the boundaries and barricades I have had to put up to keep myself safe and happy and able to try to live a normal life in all the chaos.
I wish you the best of luck and again, I hear you and I understand you.
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[…] When Mental Illness is Mean (ctworkingmoms.com) […]
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Thank you for this very real post. It is very difficult when we see our parents aging, and everything that comes along with it. You are a great daughter for not giving up on her, because some kids might just get fed up and leave. I do think it’s important for your kids to be exposed to it for a variety of reasons, but yeah…it’s never easy when it’s hurtful to your children. They may not understand now, but I think they will eventually understand.
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I grew up with my grandparents and later, great grandma, all under one roof with my parents and brother and me. My grandfather passed away when I was 16, and for probably the last 4 years of his life, suffered with dementia and was “mean” often. My parents explained it to us (I was 11 or 12 when it started and my brother was 7 or 8), and it was just part of life. It was tough at times, but I think it was actually really valuable, as we both grew up understanding that mental illnesses, though invisible, can affect people in awful ways. We were fortunate to have known him “before”, which probably helped a lot, but in my case, I think it was a learning and growing experience. It is so hard to see it happen. Good luck with your decision- I know it’s not at all easy!
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Sharlene – thank you for sharing this. I’m so sorry for the struggle this obviously is and the confusion that it sometimes causes your children. But, what a wonderful daughter you are. You clearly have educated yourself and looked for ways to adjust to the changes your mom is facing.
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Oh, this is so heartbreaking. It’s one thing when our parents are mean to US, but to our kids? That’s unbearable. You seem to be VERY understanding of your mom’s illness and able to grab the teachable moment, which must be due to something special in you. It occurred to me that this is an opportunity to teach your children the power of their OWN words — how words can hurt, or make you uncomfortable (showing favoritism), or not make sense, and then help them to develop defenses to these things.
My children’s father can be thoughtless and forgetful with them, but I have tried to help them see he isn’t doing it on purpose. He’s just limited in his ability to understand how it hurts them. It doesn’t make it hurt any less, I’m afraid, but it gives it context and reduces the importance of what he says/does. It’s a tool to mitigate the harm. That’s something, anyway, and your children will acquire this tool, too, based on your willingness to explain your mother’s ways to them.
Good luck, Sharlene!
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Thank you for such an honest post. From what little I know, I think that whatever decision you make will be right because it comes from a place of love and honesty. Sending lots of strength your way.
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Sharlene
My heart goes out to you and your family. This has to be incredibly hard — to expose your children to the challenges of your mother’s illness, and also demonstrate how we need to understand the incredible challenges of degenerative conditions and the depression and mental illness that can sometimes accompany it.
I just wanted to share my father’s struggle in hopes that it can give you hope that you are teaching your children incredibly important life lessons – because that is what i believe you are doing.
My father grew up with a mother who had a nervous breakdown when he was 2. Back in the 1940s, they didn’t know how to cope with such a thing, so she was institutionalized, subjected to shock treatments and ice baths. They eventually lobotomized her. She continued to struggle with anger, violence, and erratic behavior throughout my father’s youth.
It was not easy for my father or his siblings, but they learned a lot from their challenges and each one of them raised families of their own. My father and his two brothers and sister were lucky enough to have a remarkably loving father who did his best to raise his children well. He showed his wife love and compassion — and taught his children that same love, and did the best he could to support his kids so that they would grown up and lead productive and good lives.
My father learned to understand his mother’s weaknesses and challenges. When it came time for him to marry and start a family, he was very careful about who he chose as a spouse and he was thoughtful about what kind of family life he would have. He didn’t want to raise children in a world of strife and anger. He worked hard to provide a loving and supportive home when he raised a family. My brother, sister and I had a remarkable childhood with two parents who loved us and raised us to be good people. My father learned compassion,love and acceptance from the challenges he faced and he conscientiously taught each of his children those lessons.
And i believe that this is what you can pass on to your children – what you are passing on to your children by showing them that life isn’t always perfect, or easy. Hang in there.
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This is an incredible and powerful story. Wow. Thank you for sharing this, with me, and even more so with us all!
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Wow this is so powerful. Thank you for your honesty. My coworker is going through something similar with her mom and it breaks my heart to see how much her moms behavior hurts her. She knows that it’s not how her mom truly is, but it still hurts her badly. Hugs and love to you Sharlene. This stuff is so hard.
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Wow Sharlene, I’m speechless. I commend you for your courage to write about this difficult situation. It may be difficult for your children right now, but I think as they grow older they will understand. Please keep doing what you are doing and keep your head up. You are an amazing person and your mom and your family.
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