How do you deal with shame around a mentally ill, aging parent?
June 3, 2016 7:28 AM   Subscribe

Who has lived with severe untreated mental illness in a very public way, for a lifetime, and has burned bridges with people left and right?

This person has become a pariah and laughingstock in their community. And is aging and in need of care. But is in a grey zone of competency. Still mobile, physically healthy, creating scenes.

It's almost certain that in addition to particular severe mental health issues, neurological problems are involved - there have been car accidents, head traumas, both in the past and more recently.

They're getting care through insurance for that - meds, through a psychiatrist. They see their GP fairly regularly. A full neuropsychological assessment is not in the cards at this point. There's no rehab for this. Therapy is unlikely to be helpful at this stage. They're already taking the meds that would be prescribed anyway (tricyclic antidepressants). Support beyond that is beyond our means, and there is nothing in our public health system for it. A forced assessment would not be worth the disruption of trust, for what it could actually get, which is exactly nothing, in our system. It's not worth the betrayal of trust. As long as we have their trust, they are willing to work with us to see things through.

It's a question of what can be practically done - and that is, the meds. Seeing them weekly. Managing their expenses. Talking to the GP. All that's being done, with the parent's cooperation. For anything more involved, it's a question of waiting for them to get bad enough.

Living with them is not an option that is at all comfortable to anyone. They are taking care of themselves - not to any preferred standard, but covering the basics.

Ok. So. The issue is that behaviour that used to be taken by people in the community as "eccentric" or "charming" is now understood as bizarre - and sometimes interpreted as "threatening". It is actually not threatening, it's that their communication skills have degraded some, and they look more unconventional in dress and manner.

(Basically, they chat to people, thinking the conversation is going one way, and not seeing that people are not enjoying it and are experiencing it as unwelcome.)

Many of the people who used to know them and could contextualize things, and would give them the benefit of the doubt, are dead or have moved away. It's most often new, younger people in the community, seeing them as they are now who are judging (and understandably, but unreasonably seeing his behaviour as threatening).

Some critics are people he did know who he put off due to his past (untreated) behaviour. Some of those chickens are coming home to roost.

Except... it's not their fault. It isn't. The nature of the illness(es), and how things played out - there was never going to be a fix for them, not at the times and places it might have helped. And now they're too old and the issues are so deeply established for any real difference to be made - it's just a fucking tragedy, honestly.

All this is painful to us, as children. The inevitability of it. The parent's isolation and pain. Knowing they will never really understand how or why things happened the way they did. The fallout - stigma, shame, being known as "that person's" family.

The few who do have sympathy for them shame us kids for not having done things right. Well - we had a hard time, too. A really hard time. The parent isn't controllable. It probably feels good to say, "you should give up your life to watch this person 24/7". Not so easy to do.

The question is: how do you handle shame that comes from a parent's mental illness.

If you have thoughts on things that might be helpful to the parent, those are welcome. Ideas on how to keep them out of hot water with other people are very welcome.

But please do not suggest cutting this person off. We love them. We are sad about them. We can't really help them. Cutting them off is totally against our cultural and personal values, and it would hurt the parent and us even more. I really ask that answers come from a position of empathy for people with mental illness, and that people who feel that "they could have done otherwise" refrain from posting those views, that is not helpful.

I just want to know how to cope with the shame.
posted by anonymous to Human Relations (10 answers total) 3 users marked this as a favorite
yeah, it's not your fault.

i think there may be issues around what's your job / responsibility related to care. and then perhaps you feel people are judging you on the call you make there. but really, caring for old parents (or grandparents) is a problem many of us have experienced. and most people know there are no easy answers there. so there is likely more sympathy than you realise. (maybe you've had a bad experience with someone and are over-extrapolating from one bad tempered fool).

(one thing i don't agree with, though, is your "not threatening". to some extent that has to be the call of the person being threatened. if they feel threatened (in good faith) then it is threatening (to them, which is important)).
posted by andrewcooke at 7:52 AM on June 3, 2016 [3 favorites]

I really feel for you - this sounds like a very painful position to be in. Am I correct in thinking that you're part of a close-knit, everyone knows everyone's business community, and that at the minute, you're experiencing the negative impact of that? I'm wondering if there is any way you can leverage the community to your advantage. Is it predominantly the older members ho have being judgmental? Could you open up more to other younger members and educate them about your parent's condition? It may seem risky, but I wonder if opening out could invite support rather than shame, at least from some?

Otherwise, it may be one of those situations where you and your siblings have to somehow find the strength and resilience to cope with this through your love for each other and your parent. I know that is easier said than done, and I wish I knew how to do it. I read a quote from a completely different context - an article by a woman who had a baby with her husband when he was dying of cancer. She says:' I’d learnt that you surprise yourself by how resilient you can be when you love deeply.' I try to live by that, and not let the potential for pain (or shame) stop me from loving fully, and hopefully finding strength in that.

I hope that helps in some small way x
posted by Dorothea_in_Rome at 7:56 AM on June 3, 2016

The question is: how do you handle shame that comes from a parent's mental illness.

You push back when presumably well-meaning but wrong people say "you should give up your life to watch this person 24/7." Push back verbally - "that's not possible and suggesting it is not helpful." And push back internally - don't take that burden on. Just don't. You can't do more than what you are doing. Your parent has a permanent disability, the treatment of which you manage to the best of your ability. You can't fix it by letting their life fully subsume yours, any more than you could fix any other chronic illness/permanent disability.

Except... it's not their fault. It isn't.

I'm sorry for your parent, I can't fathom how difficult all this rejection and ostracism must be. Behaviors caused by/resulting from illness aren't the ill person's fault. But they do have consequences nonetheless. And if people feel threatened, then they have a right to feel those feelings and to act on them (by avoiding the ill person, if that's their choice).

But avoiding your parent isn't necessarily the same as judging them, and it isn't judging you. It's about their own agency. So again, don't take on the burden of shame here. Your burden is heavy enough already, it seems. I'm sorry for that and I hope you find respite.
posted by headnsouth at 7:58 AM on June 3, 2016 [3 favorites]

Feel sorry for the persons trying to shame you for their backwards ways. Perhaps gently suggest, if the opportunity presents itself, that they bring their attitudes about mental health into the 21st century.
posted by at at 8:31 AM on June 3, 2016 [2 favorites]

I think that really the only thing you can do to fight the shame is do the work to internalize that kids can never take responsibility for their parents, the parent's choices, the parent's behavior. You just can't.

In general terms that's true just about people in general--like this is frequently a big issue with spouses, who are effectively peers--but it's extra special true across the parent child dynamic.

If you're not in touch with NAMI or similar, I would definitely encourage seeking out their suggestions and resources. Also--this may sound a little weird--but Al Anon may also be helpful. That's a support organization for people who are in relationship with problem drinkers; however there are enough similarities (behavioral problems, unclear lines of responsibility, social pressure about those, disease vs. volition struggles) that you may find a lot of relief and community there too.
posted by Sublimity at 8:58 AM on June 3, 2016 [2 favorites]

Yes, this is good: "That's not possible and suggesting it is not helpful."

I love it when the well-meaning officious stranger trots up and says, "Your loved one needs help!" Yeah, ya think? Hey, guess who knows that better than you! Me! That you just said it to! Fuck the fuck off foreeeeeverrrrr! Or, rightrightright, better to just say, "That's not possible and suggesting it is not helpful." (But I'm going to say it in the strongest fuckthefuckoff tone of voice I can muster, you better believe.)

Call NAMI and United Way and get a referral for a social worker and make a plan so that if (when) it becomes necessary to involve the state, it will be in the least-harmful way possible. Talk the situation through and get on radar as involved, caring, trying-to-do-the-right-thing family members. Explain, and ask for help. Then you will have done all that you can do--because this is something individuals can't do that the state is supposed to do but doesn't do because instead of fixing our flawed system, Reagan dismantled it, and now we have no, or barely any, system.

Remember that in fact it really really is not your fault: mental illness is a societal problem, not a personal problem. A functioning society would provide the help that a lot of wrong jerks are busily telling you it's your responsibility to provide. We don't live in functioning society. That's not your fault.
posted by Don Pepino at 9:09 AM on June 3, 2016 [2 favorites]

Fuck anyone who treats you as having a "stigma" because your parent is ill. Seriously. Fuck them. It's not your parent's fault and it's not your fault. I wish I had more concrete advice, but I just wanted to chime in that while people expressing concern about your parent is somewhat understandable (depending on circumstances), anyone judging you for happening to be related to a sick person is full of it.
posted by praemunire at 12:54 PM on June 3, 2016 [1 favorite]

The question is: how do you handle shame that comes from a parent's mental illness.
I just want to know how to cope with the shame.

my heart goes out to you. this particular shame is very familiar. My mother is now 77 and has gone from being considered a more or less harmless eccentric to the village laughingstock. She dresses peculiar, lacks personal hygene/smells and has no inhibition in sharing any intimate detail with an stranger in a shop to solicit attention. she has alienated all her carers to the point the agency now rfuses to send carers. She is formally diagnosed with depression and on meds, and in talk therapy, but still her mental state deteriorates steadily. only because she is now since 2 yrs mostly housebound in the wheelchair the situation is now more contained. when she was still able to get about on her own it was horrible - people would mock her and make fun of her and she - depending on her mental state on any particular day - either did not notice or flew up in impotent screaming rages.

Sometimes she would purpously create embrrassing scenes: one christmas eve, some years ago, she walked barefoot in the icey rain clad in a night gown, weeping, knocking on doors, complaing we, her children, were not home for the holidays. it was true - i had a 3 montsh old baby and had finally decided to skip christmas with her, among other things due to the state of her home not being suitable for a tiny baby (no heating, too filthy, and she was droning on about how the baby would grow up doomed as I was already 43 when he was born). My brothers had their own reasons. I don' t know what was worse: the thought of her walking through the rain etc, or the comments afterwards neighbours and relatives in the village judging me and scolding me for not bringing her to our home, etc. (my husband refuses to have her in our house because of the strong smell).
I only share this anecdotes so you can see I am familiar with this shame.

Shame for my mother has always been part of my life, from about primary school age. I find that as I grow older, I am 51 soon, the shame lessens as I care less about what they say. They are not the ones who literally wipe up the shit. they have no idea.

I have no recipe but what does help me is to make my own life and work on my own happiness independent from her. I have two lives: in the village as that woman's daughter, and in the city where I live with my son and my husband ,and those two circles do not intersect much. We go visit her now very 2 to 3 weeks (we cleaned up a part of the big filthy house up to stay in and we cook separately on hotplate(microwave and dont have to share her bathroom) and I try to do my best by her when i am thre. I feel sorry for her and pity her. but she is her own person and so am I.

I cannot save her. and that all the well meaning comments from neighbours and relatives are just crap. I smile and nod and move on. I dont engage in a discussion it is futile.
this compartmentalising my life is how i cope with the shame, it is possibly not the most healthy but it works. Only few friends in the city know about my mother and I find this useful to have a whole circle of people who do not define me through her.

I just want to say you are not alone, and there are others in similar situations. I wish you much strength. Look out for yourself first.
posted by 15L06 at 2:17 PM on June 3, 2016 [4 favorites]

Nthing NAMI, and seconding praemunire. There's a huge stigma against mental illness in our society, and it's wrong. Very, very wrong, and cruel. If someone had lung cancer, would you shame them for coughing? Of course not, but it's still acceptable to shame people for illnesses of the brain and brain chemistry. Fuck those people. They are what a friend of mine used to call "scrapeable" - meaning they're something you'd scrape off the bottom of your shoe.

Do not be ashamed. If anything, you have my permission to shame anyone who tries to make you feel ashamed. It is incredibly draining to deal with someone with mental illness, and you can tell these people to go bork themselves with a large cactus if they think for even one minute that they're qualified to tell you how to live your life and how to allocate your emotional resources.

I have a close family member with paranoid schizophrenia. I don't broadcast that info out of respect for their privacy, but when someone asks about them in a way such that the only non-evasive answer is to disclose that they're mentally ill, I do so. And inevitably, it turns out that the person I'm talking to has a relative who also has some sort of serious mental illness - severe depression, schizophrenia, bipolar, etc. I mean, even the attendant working at the laundromat in which I had the police evaluate my relative and take them in to be committed, came over after it was over and hugged me, and told me in halting English that she has a cousin who is the same way. Yeah, that's right, I had this huge, traumatic scene, with police, EMS personnel, gawking bystanders, and a weeping relative play out in a freaking laundromat. At that point, I had only even been aware the relative was ill for 3 or 4 days. But I was damned if I was going to let anyone make me feel ashamed about it. My point of view was that the only thing I was concerned about was my relative, and getting them the help they needed, and anyone who got in the way of me helping them was going to have hell to pay.

The only way to get rid of the stigma is to refuse to be beaten down by it. I know that your resources are taxed and I don't mean that you should go around being an activist. Just don't beat yourself up and don't take shit nor shame from anyone. It's an illness. An ILLNESS; just like multiple sclerosis or diabetes.


And feel free to MeMail me any time you need someone to talk to.
posted by MexicanYenta at 2:33 PM on June 3, 2016

Would it be worthwhile doing some door-knocking with his closest neighbors and local stores that he goes to regularly? To provide some context to his behavior - you don't need to apologize for it - just to explain that there is no threat, just that his behavior will be odd and possibly inappropriate at times, and ask for acceptance. (Of course if there are situations where his behavior crosses the line, ask them to call emergency services and you in quick succession).

Nthing the "you should not feel shame" - you don't get to pick your parents. Hold your head up high and do what you can to support your family. But also remember that you're not responsible for their words or actions.

Most importantly, stay safe yourself. (And as MexicanYenta says, "FUCK SHAME" - qft)
posted by finding.perdita at 3:18 AM on June 4, 2016

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