Caring for my dying N Mum

[MooseBear]

Hi,

I'm 42, have CFS ME, and complex ptsd. At the absolute height of my illness I cut off contact with both my (divorced) parents without me knowing why; just that I had to make a choice between what felt like their survival or mine. This lasted 5 years, I did a lot of research, and I've been back in contact and managing well since 2021.
My mum was diagnosed with terminal cancer 6 weeks ago. She was given 6 months to live, and because she hates institutions, I volunteered to stay with her and care for her (we live a couple of hundred miles apart so I can't care for her from home). As we've been getting on well, I thought this would be manageable. I also still feel a lot of guilt towards my mum, partly for the fact I "hurt her so much by breaking contact", but also because I've been feeling guilty towards her and responsible for her my whole life, like my brain has a setting where it sees her as a very young, vulnerable child that needs me to save it (and I've been having those images since I was a very young child myself). If I "abandon" this child that she is, I start to feel like I will need to harm myself.

We'd been getting on well and it was working well until recently. The only way I can describe it is that the illness, or its terminal status, is removing other parts of her and what's showing through now is the narcissism with no disguises. Shes lost interest in anyone apart from herself, like she has no interest at all in our lives after she's gone. She was going to leave a bit of money to her grandchildren (my sisters kids), but has instead given her car to just the golden grandchild and decided she wants the remainder to go on a bluebell wood in her memory (she didn't want any of it spent on care that would relieve me for a few hours, but I have insisted).
It's progressed now to the point where she barely ever smiles at me, she just looks at me with this utterly cold indifference, and it's chilling. She knows I have ME and I need to rest (and I am stating my needs calmly and clearly) but she does not seem to care. I am doing really long days and then desperately need to get to bed, and she purposefully seems to draw that process out so I can't leave the room. I tell her clearly that I need to lie down and if she rings me when she needs something, I'll come straight down and do it. Instead I go to check on her an hour later and find her struggling with something, and she says "thank GOD you're here at LAST!" as if I'm some kind of abuser who left her locked up. She doesn't ask for anything in a straight way but as if I should have already thought of it, as if I'm a flawed child. She won't watch or listen to anything without me turning it on for her. Instead she lies there with her eyes closed and says "are you going to leave me again?" when I leave the room. I think she just wants me to sit and gaze at her for the next few months, and she's punishing me for not doing so. Everything I AM doing is invisible to her.
This all feels familiar, as if this is how she was when I was small, and we've come full circle, or as if this is the truth of the relationship (when it comes down to it, her needs trump mine, and I do not matter). I can dimly see now that this is why I've had a lifetime of shame and feeling faulty, not to mention crazy. I have a vague sense that this is where my perfectionism comes from, and like nothing I do is ever enough.
My mental health is sliding off a cliff. Her lack of interest in my existence triggers this kind of existential terror in me and feels like reality is melting. I think the worst part is the total and utter indifference when she looks at me; I can't even describe how cold it is. I keep thinking of the scene at the end of Terminator 2 where the T1000 is in its death throes and all the different guises of it come up, until it becomes just this completely impassive face. There's horror in it.
And then my mum starts behaving like herself again and I think I must have imagined or dramatised all of the above. And it's so confusing. How is it possible that she can care and not care, love me and not love me? How can she be both these people?
Then I think I'm being really un compassionate and maybe everybody who's really ill and dying becomes like this. It just FEELS deeper. Like I'm finally seeing the invisible sniper who shot me full of holes (before I just had the holes and no cause for them).
I feel trapped and crazy with all this. Thank you so much for letting me write it. The only way I can even imagine a way through at the moment is to keep writing and reading about this, like maybe the truth will insulate me? There is, by the way, no local hospice, and social services are refusing to help. We get about 20 minutes of care a day (washing her) and I'm doing the rest except when my sister takes over. I recently took some time off and when I came back my sister looked like she was about to have a breakdown. So I know my mum isn't just doing it to me, but it doesn't FEEL that way. Visiting professionals think she's lovely and that we have a great relationship, as do her friends.
I just can't cope. I need a protective shield, or to see the truth of what's happening without self doubt and confusion. Any replies would be gratefully received.

[Cat of the Canals]

I think you are generous to be in contact with your mother at all. The fact that you are her full-time caretaker? MooseBear, you have nothing to feel guilty about!

as if this is the truth of the relationship (when it comes down to it, her needs trump mine, and I do not matter).

I don't think there's any "as if" about it. That is the relationship to her. Narcissists have Main Character Syndrome in the worst possible way. Everyone else is secondary to them, to the degree that I believe most of them struggle (and ultimately fail) to see us as individuals with our own needs. We are barely even "supporting characters." We are more like props. We exist to give them what they want. If we are not giving them what they want, we might as well not exist.

The fact that she ignores all you're doing for her and constantly demands more isn't an accident. It's not done out of ignorance. She wants to create an unending loop where you are always trying to do just a bit more, because maybe then she'll acknowledge it. But she'll never acknowledge it because then you might think you're done. She will always create another hoop for your to jump through. Another way to tell you that the absolutely soul-crushing, back-breaking work you're doing still isn't enough.

If there is any possible way to get more help in, please do it. Sorry, but eff her bluebell wood. If she wanted it so bad, she should have saved enough for care ANY flowery memorials. Don't sacrifice your own wellness for your abuser.

[FromTheSwamp]

Please remind yourself that you can permanently damage your health if you overdo with ME/CFS.  Your mother won't understand this, and it's likely that most of your other family won't understand this.  It's up to you and only you to protect your health here.  This is a terrible situation you're in, and I completely understand your generous desire to be there for her. But get help for yourself!  This worries me terribly.

[Lalitha]

Hi Moosebear, Im new to the board and there are people here who can advise you better than I, but just wanted to say I'm sorry you're in this situation. I'm a similar age to you with NPD-mom. Is it possible for you to see a therapist? It really helped me to move through the guilt and see that I owe her absolutely nothing, as you owe yours absolutely nothing. Have you seen Dr ramanis videos, I recently watched one on narcissistic parents found it very helpful. My NPD-mom does that 'look' exactly as you describe. I once caught it on camera, it really is horrifying but blink and you miss it (most people who don't know her well miss it) unfortunately I think it is her true self but she usually wears a 'mask' like a false self.
Sadly it sounds like nothing you do will ever be enough for her. Remember they cannot recognise anyone else's needs and will run you dry, it sounds like this is happening. For a long time it was sooo important to me to try to make them see that I am a good kind person since I was frequently told I was selfish, lazy etc. You sound incredibly caring but don't hurt yourself to try to jump through the hoops, she will keep moving the goalposts.
Look after yourself, you deserve all that is good in life and I hope that the situation resolves as well as it can.

[Poison Ivy]

I'm sorry you're in this situation. My sister has been living with our mom for the past 3 years (since the start of the COVID-19 lockdowns).In the past several months my mom's health has declined (not a specific illness that we can identify; general infirmities of aging instead), and her ingratitude and meanness have increased. She often treats my sister like a servant.

Like your mom, my mom tends to reserve her bad behavior for her children: primarily my sister; then me; then our brothers, who spend the least time with her.

One thing that has made this a little easier for me to cope with than it is for my siblings to cope with (I think) is that I did not have the illusion that our mother was a great person before this. She wasn't.

[MooseBear]

Thank you so much everyone for your replies. I'm taking each and every bit of advice given. These are the things it's helped me to change:
1. I'm trying to get some private care; someone to do the mornings. I'm crashing and need rest.
2. I've planned to go home for a couple of weeks at the end of the month
3. I'm starting to see it's about separating my worth from what she thinks is my worth. So I don't have to be perfect; being perfect is a trick because it doesn't ever result in her seeing or accepting me (or letting me rest). Tonight I've left the washing up in the sink.
4. I'm trying to give responsibility back to her for herself. Eg. when she says in a shaky voice "am I going to bed now?" meaning How dare you put me to bed now, I say sweetly "not at all; just because I'm going to bed doesn't mean you have to. You've got telly, audiobooks, and a phone. You can do whatever you like. Goodnight!"
It's driving her nuts.

[Cat of the Canals]

I'm trying to give responsibility back to her for herself. Eg. when she says in a shaky voice "am I going to bed now?" meaning How dare you put me to bed now

Good lord, you have the patience of a saint. I want to tear my hair out just reading this. The faux-waifish absurdity of it. I'm so glad to hear you're making changes.

[sunshine702]

I would be day drinking wine 🍷 in the bathroom if I had your responsibility.  You are doing a fabulous job it sounds like.

Yes with Narcs it is never enough.  You could rescue a school bus full of drowning children and she would comment on the bus still being wet.  In their bird brain their thoughts are the only correct ones.

I second talking to sometime/ anyone regularly.  It is a steam valve.  Anyone. A pastor. Us. Betterhelp.

Also remember this will be over at some point soon..  each day is a day closer. 

[Boat Babe]

Hey Moosebear - we hear you loud and clear.  There are lots of sayings we use around disordered and abusive people and one of them is that we don't set ourselves on fire to keep other people warm.  I suggest you sit down and write down exactly what you are prepared to do for your mother on the practical level in order to deliver the care work that you have committed yourself to whilst LOOKING AFTER YOUR OWN HEALTH. Writing things down really helps us clarify issues and commit to a course of action. Then you stick to that plan as if your life depends on it (because it does).  She can moan/bitch/snipe all she likes. You have a plan and you stick to it. Secondly, you get some help for your emotional and mental health. Dealing with chronic illness in and of itself comes with a whole set of challenges to stay emotionally and mentally well let alone have to care for a disordered and dying family member who has a history of abusive behaviour. You have to be very kind to yourself and to get all the help you can get. Really, really, really.   This forum is brilliant for that and I am so glad that you have reached out for help. You are not alone. Hugs.