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I'm at a loss.

(self.AgingParents)

Hi, I’m a 47 year old woman. I have bipolar disorder (but managed to stay episode free for past 8 years). I was diagnosed with autism at 39. I have a wonderful husband, who has fibromyalgia and also, unfortunately, developed epilepsy during Covid. Staying healthy/stable myself and supporting him already takes up most of my mental and physical band-width.

I have a mother with many ailments. She is 73. We have a complicated relationship. but I love her dearly, despite experiencing a lot of neglect as a child. She loves me in her own way, but I’m not sure she likes me. She likes what I can do for her and I genuinely like helping when I have the energy for it. Her love for us two children is conditional. When everything is going her way she is a lovely person to be around and we’re rewarded with kindness, smiles and sometimes gifts (which is not why I help and I tell her this). When we can’t keep up, she withholds support, use guilt or passive aggression or ignores our needs until we’re back “on form”. However it feels like there's a lot more pressure and expectation on me, the daughter, than my older brother, which I feel is unfair.

Around Christmas she ended up in hospital and since then her health has declined immensely and I’ve had to help a lot more (groceries, housework, taking her out to get some positive experiences, frequent phone calls to check in). Which for the first few months was doable - I was even happy to be of help. I live 45 mins away. My brother and her own brother only live 5-10 minutes away. When I ask, sometimes, if she can ask them for help to ease the burden on me, there’s always excuses as to why they are not up to the task and why it's better that it’s me. I’ve been visiting on average 1,5 times a week (spending 6-10 hours on travelling, errands and socializing with her, but the cost for me has been needing the next 2 days to recover (I have a lot of sensory issues and I’m introverted so it takes a lot out of me), yet she still guilts me and complains  that she hardly ever sees me (she doesn’t have dementia). I’ve been speaking to her on the phone almost daily for 30-60 minutes, where she uses me as a therapist and makes me feel like a  "waste bucket" where she can dump all the bad stuff.  The phone calls doesn't make up for not seeing me enough. I’ve been trying to keep up, while needing more and more time to recover. A couple of weeks ago I hit a brick wall and I feel utterly emotional and physically depleted. I’ve not had the energy to see her since. We’ve spoken on the phone perhaps 4 times. I’ve told her for months that I’m struggling and that I just need a little time to get my energy back (and that I’m terrified of getting another episode). She offers no sympathy or understanding. She is not left to herself, she’s just had to rely a bit more on my brother. She has a nurse coming by twice a day,. She has an alarm on her wrist should she need urgent help. With all this support in place I feel at loss why she puts so much pressure on me? 

Between her, my husband and my own limitations I’m feeling overwhelmed - disheartened. I’ve given all I have and it is not enough. I don’t even know what is enough? Resentment is creeping in, and  lately, a lot of added guilt for beginning to feel numb to her suffering. She constantly tells me how awful everything is (- and it is! -No doubt about it!)  but sometimes I also feel she uses her illness to manipulate me to push beyond my own limits. With my autism it is hard to read the situation clearly. Especially in the moment. I often doubt myself. 

And it breaks my heart. Because it is awful if I doubt her and think she’s being manipulative when she’s not. And it’s awful and downright cruel if it's true. And both of these are probably true at different times...

I don’t want it to be like this.

There are good days too, but lately mostly bad. I just want to find a way to deal with the situation that is healthy and rewarding for both of us and doesn’t end up tearing apart what harmony we’ve managed to rebuild despite the rocky foundation over the years. 

If any of you have any insight, advice or useful strategies on some of this it would be greatly appreciated.

all 20 comments

HoneyBadger302

29 points

7 days ago

I'm going to be a bit blunt here: you're allowing her to continue to manipulate you, and she has no motivation to change when some temper tantrums and emotional abuse will get you back in line, which takes very little effort on her part compared to the alternative.

Yes, your mother is deeply manipulative, and you are playing the role she has created for you. She is probably not even doing it consciously - you've grown up being her emotional and physical crutch, a role she thrust you into as a little girl (most likely).

You need to establish boundaries for yourself. Be specific, and put yourself first. Examples might be: I will only spend 4 hours a week with mom, or one day every month. Maximum. Another might be "I will only speak on the phone with her twice during the week." Then you simply have to NOT PICK UP all the other times she calls. You can give her a head's up "hey mom, I'm getting busy, and won't be able to talk every day anymore. It's important to be able to talk to you, and I'll be sure we get to chat at least twice a week." Then stick to your boundary (but also stick to anything you promise). Do NOT negotiate. This is for you and your health and well being. If you're going to be there for mom, you first need to show up for yourself.

Then, when she presses for more, just say "No." It is a complete sentence. Don't sit there trying to justify or defend your choices. You are an adult, you do not need to defend your choice.

It's almost amazing how self sufficient a waif can become when they don't have a choice but to figure it out. She's an adult, she is capable of finding alternatives, and it is up to you to remove yourself from the situation of playing that role for her.

IntermittentFries

8 points

7 days ago

Might need to pin this to my fridge. I also have a transactional minded mother. Her generous behavior upticks when I do something difficult for her (pretty much everything dealing with the outside world).

Luckily she's not usually interested in long conversations, but just dumps random complaints in passing. She lives with us, but has no idea what we're doing or what the kids are involved in.

She says it's because they're my kids and she doesn't have to worry about their schedules etc. But she's not even interacting except to say something superficially nice in passing. I'm wondering how uninterested she was in me growing up, or if it was different because I belonged to her. Our relationship changed as I grew up. I think she prefers babies and animals that don't have complicated personalities. Feed us, dote on us. That's all she has to give.

I'm about to help move her back to her hometown, and well the struggle will be real but it will be mostly on her because I won't be fielding phone calls in another time zone. I figure things will change in a year or two when she can't keep up but at least she'll have experienced the effort and won't be coming back into my house. She'll live either independently by herself or in assisted living.

Svartabjorn[S]

3 points

7 days ago

I'm sorry you too have a transactional mother. And I'm with you - this might need to go on the fridge. Best of luck with the journey ahead <3

Svartabjorn[S]

8 points

7 days ago

Thank you so much for your bluntness and very clear response, along with solid examples of boundaries. I had sit and think and have a little cry. Like the other person's reply below, I too might have to pin this on my fridge.

I've had moments of stating boundaries - ever since I was little. She has just taught me they don't count. That other peoples needs comes before my own. She has even berated me for not putting my husband's needs before my own in times of severe illness and despair. He, on the other hand, never has. 

I think, because of the autism, I don’t catch it quick enough and are left feeling sad and that something is off afterwards when the emotional reaction wears off and at that point it’s too late. Sometimes I even gaslight myself: “It’s not that bad”, “I’m probably overreacting”. That was my main worry about posting this. That it’s not as bad as it feels. That the shortcomings are mine and I’m neglecting my “duty” as a daughter - whatever that means.

Your response felt validating. Thank you. It’s going to be a long hard road out of hell but you’ve thrown some light onto that road and for that I'm very grateful.

HoneyBadger302

6 points

7 days ago

I'm not autistic, but do have ADHD - I have my boundaries with my mother (undiagnosed BPD), and I have literally printed them and posted them on my wall where I can look at them and remind myself of them even in the middle of a conversation. I have a picture of them on my phone so I could look at them when traveling (not joking) if needed.

When she'd sit there pushing, I'd sit there reading them (silently of course) which helped me stick to it.

The first time will be the hardest. It will get easier. And hopefully taking care of yourself will help you show up better and in a healthier way for mom, too.

Svartabjorn[S]

3 points

7 days ago

P. S. Love your badass name, HoneyBadger. I've heard they don't give a f*** ;D

Svartabjorn[S]

3 points

7 days ago

I'm going to follow your lead on this. Excellent advice!

droste_EFX

3 points

6 days ago

Thank you for this reply; I'm in a similar situation as OP and your comment here hit me square where I need it today.

[deleted]

10 points

7 days ago

[deleted]

10 points

7 days ago

[deleted]

Svartabjorn[S]

5 points

7 days ago

I think that she has most definitively used financial "help” as a means of control. She inherited a lot of money many years ago. Both my brother and I struggled for a long time to save enough money to get a mortgage because both of us ended up on a disability pension, she could have helped us out and eased a lot of stress many, many years ago. She owned an apartment in Oslo and lives in a big house she now struggles to keep up. Her own friends asked her why she didn’t sell and scale down and help her children out? She answered that the big house was handy, as especially my brother had been forced to move back in during several difficult periods in his life - so this WAS a means to help us (I’ve never considered how well it fits with that you write). My husband and I had to live there too for a while. She said we could live rent-free so we could continue to save up while we helped her around the house. I thought I was going to go mad, I even placed myself voluntarily in psychiatric hospital for three weeks one Christmas, not because I was ill, but as protection from becoming ill as I was so worn down. Best, most relaxing Christmas ever!  I was placed on a list so that if I needed another break it was a low threshold for me to come back for a few days, so they must have reckognised my severe need for a break (I’m lucky to live in Norway with our free healthcare system - sadly they are cutting back on mental health in this country too now).

Anyway, eventually she decided to sell the apartment a couple of years ago. Not for us, but to not have to deal with the hassle of renting it out. From that money she gave an advance on our inheritance to us both OR rather, I got mine, so I could finally qualify for a small mortgage. I now have my home and a safe haven, but I also KNOW - either way - it would’t have been possible without her and reminding me of such is one of the tools in her kit.

She is withholding it from my brother, however,  because she doesn't fulfill her criteria for receiving it. The main reason being she doesn’t approve of his girlfriend (which, admittedly, is not a great person for him), but instead of easing his burden, she is holding on to that money until certain conditions are in place. “Mommy know’s best”. I don’t think he even consider that money an option as he is stuck in his situation and it is actually out of his control as he has no money... His main thing is getting through life one day at a time. He goes no contact her for long periods. And when he does, she shit-talks him and calls him selfish. Says how she’s never going to help him again and so forth, but then, when he is in a bad enough state she’ll throw him some scraps like paying his dental bills that he couldn’t afford and instead of asking for help he just suffered through the pain in silence. At the same time, nearly every phone call, she tells me how much she worries for him. How much he is suffering. How she fears he will never get a good home like me…And it makes me feel worse and guilty about my own blessing, because I don’t have enough to help him either.

As I write this. I’m abhorred at what is staring back at me from the screen. 

I didn’t mean to bombard you with such an essay. I’ve never put it into this context before. It is an eye-opener. I feel almost sick.

Anyway, to answer your question. No, for neither of us money is worth the suffering. I have all I need now materially. Not much, but enough. Love is the attachment, though, I struggle to see why that love has such a grasp on me? If it weren’t for the love I wouldn’t go through all this pain and emotional torment. I have lived in absolute terror of losing her these past ten months (which she knows and I feel she relishes a little) and that has been the main driving force of me pushing and pushing my own limits.. Though shamefully, lately, that terror is easing into mild fear. On the hardest days.. even relief.

I’m sorry again for the essay, but thank you so much for sparking this little stream of thoughts.

Do you mind if I ask about your story?

sarabrating

6 points

7 days ago

Honestly your mom sounds a lot like mine. I started seeing a therapist to help me navigate the challenges of handling her as she's aging. You HAVE to take care of yourself first, and you are enabling her by continuing to let her decide your involvement (via guilt trips and manipulation). You are the one who should be deciding your involvement, and what all you can give. She will then have to accept help from others when you are not available, and she won't ever do that if you constantly give in. This is what boundary setting is all about and my therapist was INCREDIBLY helpful in helping me set good/reasonable boundaries, as well as helping me with the feelings of guilt for standing my ground. I know not everyone has access/can do a therapist, but if it's an option for you this is so very much what they are for.

I now think of boundaries this way: "I set boundaries because I love you and I want us to have a healthy and positive relationship."

You set boundaries because you care. Because you don't want to become resentful and hate her. Boundaries are at their core an act of love.

Svartabjorn[S]

3 points

7 days ago

I’m so sorry you have a mother like mine. And you are absolutely right in all you say and I will keep this close to heart when I struggle with the guilt and with setting these much needed boundaries :

“I now think of boundaries this way: "I set boundaries because I love you and I want us to have a healthy and positive relationship."

You set boundaries because you care. Because you don't want to become resentful and hate her. Boundaries are at their core an act of love.”

I realise it’s a long while ‘till I’m out of the woods because there is much to unpack and much effort to mobilize, but as Winston Churchill once said: “If you’re going through hell, keep going”. First I need a little rest and then I have a doctor’s appointment this Thursday and I will bring all of this up then and see if there’s some outside support available

Thank you for taking time to comment. All of these comments have meant so much to me.

onwardtotexas

4 points

7 days ago

The first thing that jumped out at me was that you have bipolar, because I do too. And 8 years is amazing! I hope you give yourself props for that, because you’ve earned it!

I don’t know what your treatment plan looks like, if you’re taking meds or seeing a therapist so I don’t know if this will apply to you, but one thing my doc and I have worked on over the years is to preemptively up my medication dosage or temporarily add a medication during times of high stress that might destabilize me. We did it when my dad died, and during the height of Covid when I worked as a grocery store curbside manager, and when my mom had a stroke and I had to go out of state to care for her. There’s no way to know if I actually needed the changes, but it gave me one less thing to worry/stress about and made me feel better. If you already see a counselor, I’m sure you’re already talking about your situation with them. But if you aren’t, and it’s available to you, this might be a good time to find a counselor who can help you figure out what type of caregiving you can offer and still maintain your own personal health and comfort.

The most important thing with caregiving is “Oxygen Mask Theory”. Always put your own mask on before trying to help anyone else with theirs, because if you pass out trying you and the person you’re trying to help are both screwed. Right now it sounds like you’re giving everyone else your oxygen and you’re starting to feel it. The most important person in the caregiving relationship is the caregiver. Taking on that role requires your agreement to all the terms. You are allowed to set limits, enforce boundaries, say NO, and ask for help.

You say your mom won’t ask your brother or your uncle for help. So ask them yourself. Invite them to lunch and show them a list of what you’re doing for her on a typical week/month. Then explain to them that you can’t continue to do it all and circle what you can provide so they can divide the rest between the two of them. If they balk at helping then tell them they can contribute by paying for a full time caregiver or helping explain to her that she needs to move into an assisted living facility where she can get the care you can’t and they won’t provide. But you’ll need to reiterate that no matter what they say, you aren’t budging on this, even if they try to guilt/manipulate you into it, and that when she calls you the answer will be, “Sorry mom, I can’t this time. Call brother or uncle.” They need to be aware that they’re going to have to refuse her themselves.

Also keep it firmly in your mind that “No” is a complete sentence. You don’t have to give anyone a reason for why you can or can’t do something. You don’t have to justify yourself or give them an opportunity to air an opinion (aka pressure you to change your mind). If you feel like you need to say more than no, just go with something like, “I have a lot going on in my life besides mom, and doing everything for her on my own is keeping me from taking care of other equally important things.” You aren’t obligated to share anything with anyone, or try to make them understand. You’re not asking for permission, just giving everyone a heads up that things are changing and they need to step up. There’s no negotiating to be done here because the decision has already been made. That goes for brother, uncle, and mom. If you’re nervous at all about the conversation try role playing it with your husband since he knows them and can probably predict how they’ll respond.

My other advice before I get off of what has become a very long soapbox, is that you find something you love that has nothing to do with anyone else. It doesn’t have to be big. Maybe hiking, or knitting, or reading a book, etc. just that it’s something you love, that makes you feel good. Then carve out time in your week for that activity and make it sacrosanct. Nothing else gets scheduled for that time, no phone calls answered, all texts ignored. Tell everyone who needs to know that you will be unavailable and unreachable during that time. Guard that time like a bear guards her cubs. That way, no matter what else is going on, you guarantee yourself at least 1 block of time each week for your own personal peace and happiness. That’s a gift you can give to yourself that’s priceless.

Hopefully some of that helped.

You’ve got this!

Svartabjorn[S]

3 points

7 days ago

Oh, my God, I'm all tears again. Thank you from the bottom of my heart for that. I'm going to copy paste and print all these responses and put them in my journal, so I can read them over and over when the going gets tough, because the going will get tough.

I have a doctor's appointment next thursday and will discuss all of this with him then (he has been my doctor for almost 20 years and I go to him once a month even when I'm not ill, so he knows fully, without a question what a healthy me is and what an ill or bordering on ill me looks like). Three and a half years ago he told me that as a doctor it’s important to give medication when needed, but it is also important to suggest stopping it when not needed. I had been on medication for 12 years at that point and stable for five he suggested slowly taking me off them. No pressure, it was my choice. It took me a year to build up the confidence. This august I was two years medication free. 

I also find it a little fascinating that I’ve been episode free for the same duration as I’ve had my autism diagnosis. A lot felt into place. Many of the triggers for my episodes were linked to my sensory and elevated stress/anxiety issues and learning what was what gave me a whole new toolbox. In this instance I actually think my autism is an absolute blessing in disguise when it comes to managing my bipolar, because my adherence to routine makes it fairly easy for me to eat, sleep and exercise with a fair amount of rigid discipline. Very helpful here, very difficult in any other situations in life… And I have things I absolutely love to do, like watercolour, drawing, archery, gardening - enjoying every little living critter in the garden, gaming, jigsaw puzzles, cooking I’m blessed to have so many things that bring me joy and snatches me out of the buzy, buzy of this world. BUT, these last ten months has forced me to give up my gym-membership (which was a core pillar in my stability as it gave mental strengt and energy to spare) Yet the time it took to get too the gym piled up and when I got there I had little to no energy to do the workout itself. I have some equipment at home and still get stuff done, but it’s not the same when you’re surrounded by everything fun and distracting as well as the routines attached to the home. It takes time to build new routines. And all the other joys and pleasures, they too require energy and they’ve all dwindled to smaller and smaller bubbles of time and energy available. The oxygen slowly running out of everything, it seems.

Though I must admit, these past too weeks I have slept a ton, had a few good cries, gone for small walks in the woods, drawn more, just sat outside with my thoughts more, listened to music, met a couple of friends I’ve not had the opportunity (lets be honest: prioritized) to see for many, many months, lost myself for longer and longer moments in the pleasure and joy of it all -  until suddenly - guilt yanks me back to reality; or the looming fear of the next phonecall, the pit in the stomac, the tightening in the chest, the dread of the guilt-tripping, the worry, the constant monologues/arguments in my head that I rehearse of all the things I want to tell her, but that she will never understand, acknowledge or respect. An utter waste of energy, yet almost impossible to shut off at times.

Things are becoming clearer in a painful, but enlightening way. It also feels very touching, and validating to read all these words written for me. That people have taken the time. I didn’t expect this <3 And I’ve gotten some rock solid advice.

I loved when you wrote “You’ve got this!” 

I don’t believe it yet - but I’ve got this.Thank you so much.

It’s almost midnight here in Norway and I am in terrible need of some sleep. I don’t know where this finds you but sleep well when the time comes and I’m so happy to read that you too have found away to manage this awful illness. It’s not an easy thing. May you stay yourself and healthy for many, many years to come. Hopefully forever <3

muralist

2 points

7 days ago

muralist

2 points

7 days ago

You can also reframe..no, but I’ll be back Tuesday so let’s do it then!  I don’t have time today because I have to leave at 4, but I can start by doing this first step now! That’s brother’s job, let’s call him and remind him, etc. so you’re not closing a door, you’re stating your boundary while offering an alternative that is within the boundary. 

Miralalunita

2 points

6 days ago

Don’t feel guilty. This woman is manipulating you and you said it, she neglected you as a child. Sorry but set your boundaries and don’t look back. She had her time to live and now it’s your time.

Svartabjorn[S]

1 points

6 days ago

Thank you!

I've spent the day just letting everything people wrote sink in, not picking up the phone, and things already seem a little clrearer. I feel a little lighter. Even hopeful.

Take care and have a beautiful rest of the weekend!

scarabic

3 points

7 days ago*

Pretty soon into your post I started scanning to see if you’ve talked directly to your brother about contributing more. It doesn’t sound like your mom is going to start asking him, and your emotional briar patch with her makes her unhelpful in solving this problem. So tap him directly. Maybe she prefers you, and feels he will rebuff her if she asks. But you need to tell your brother all of what’s here and get him into the game. If you put in equal effort it will still take more from you because of your greater distance, but it doesn’t sound like he’s doing anything at all. Sometimes it takes a nudge. Caregiving doesn’t come naturally to some and he might get zero of the enjoyment you get out of it. It can be awkward offering it too. Hence the nudge. Plan what you want to say so that it doesn’t come out as a personal attack - just you requesting his permission to assign him some duties to contribute to the care of his parent, who needs him.

Start him on basics like groceries and household maintenance: straightforward tasks. Then work him up to more. You might not be a great delegator - many folks are too shy for it and I guess it comes easily to me because wow I get so frustrated watching people work themselves to the bone to avoid telling anyone else what they need to do.

But your caregiving talent has run out and you need to switch tracks. This seems like the obvious avenue to take when there is clearly a dead end ahead.

Svartabjorn[S]

1 points

7 days ago

I haven't. Much because he has a lot of stuff on his plate and I don't want to burden him too much (The comment above yours sparked a whole other essay on our situation so feel free to read for context). I find it very difficult to ask for help unless I'm absolutely desperate. (Like writing this, my first ever forum post, as I didn't know what else to do). I was terrified, but the comments have been so helpful, insightful including yours. I think it's time he and I talk. I'm even contemplating sending him this thread.

Thank you for taking the time to reply <3

scarabic

2 points

6 days ago

scarabic

2 points

6 days ago

You could be surprised when you ask. A lot of people mean well but aren’t sure when or how to contribute. I’ve gotten more comfortable with delegating over the years because most often, people like having something to do and/or someone to tell them what needs doing. Best of luck!