Millenial caregiving for an occasionally toxic parent
December 14, 2022 12:52 AM   Subscribe

Only child caregiver of a socially isolated mother. Moving back home where I don't have any connections. Trying to sort through grief, fear, uncertainty, and resentment while anticipating a resumption of toxic mother/daughter patterns. ...Help?

My mom (64) just got diagnosed with breast cancer. We are in early stages yet and don't know the extent of the cancer. Things are craaaawling along - all we have is biopsy results and given the holidays, it's taking forever to get scheduled for scans/surgery/etc.

All I know is that treatment is going to take 1 year at least and that is terrifying/sad on so many dimensions.

I've moved back home for the forseeable future but I don't know anyone here. I'm not super young (39F) but childless and partner-less and can't help feeling like this means that my fate in life is just to be caregiver to my mother (I have always felt more like her mother than she has felt like mine. Think: cultural factors and a lot of learned helplessness on her part.)

Things I am up against - lots of isolation, and stubbornness from someone who will take on the sick role eagerly, but will not accept outside help. She is not telling anyone in her "friend" (frenemy?) circle because she is afraid of the gossip. She is originally from India and is not telling anyone back home due to fear of gossip and that they would see her as diseased/not welcome her into their home when she visits one day. I don't know how rational these fears are but this is mom. This type of fear mentality also caused her to not get mammograms for 8 years despite my constantly begging her to. So, that's some of the resentment that is bubbling up. 

Add to this our sometimes toxic patterns with each other. A lot of this centers around our vastly different outlooks on life. She also has some beliefs that sometimes border on the delusional/bizarre that make even the day to day hard to manage (she won't eat lentils, for example, because she thinks they'll cause pus. These are a staple in her diet and she's already lost weight from restricting so many things. I understand this may be a traditional healing approach but I tell her there's no real evidence of this association and she needs to eat whatever she can, but she's unmoving.) All of these things compound...there's a reason I left home as soon as I could and it is painful to be back. 

I have incredible friends who are checking in on me but they are scattered around the country. No other family (and we are not telling extended family back home as above.) For better or worse (prob better,) I can't engage in traditional coping skills of having a glass of wine or a gummy to relax while I'm here. I can work from home and hope to continue to do so. I was looking into going to the gym or taking art classes but am already worried about venturing out of the house too much when she starts chemo. 

Yes I am in therapy already, and am working on letting certain things go (for ex: I cannot make her have a more optimistic attitude towards certain aspects of her situation even if I know such attitudes are associated with better outcomes, and fine if she doesn't want to eat lentils, I'll try to find something else she will eat) and trying to set boundaries as much as possible.

This question is centered on my coping but I'm also very scared for my mom and don't want to lose her yet. I have grieved for the relationship I wish we'd had and am trying to come to terms with a new future. Trying not to get too caught up on how things look post treatment. She'll need caregiving beyond this acute period and I'm also trying to figure out how that looks (she would be very happy if we lived together forever but I eventually want a partner one day and love travel and experiencing new things - that future looks unattainable right now and I'm grieving that, too.)

This is already long enough so here are my questions - If you found yourself in a similar situation, how did you get through it? Any helpful blogs/books that made things easier? Coping strategies to get through the day/week/month/year? How did you reconcile your dreams for yourself with the reality of your situation? Finally, how did it all turn out for you?
posted by anonymous to Human Relations (19 answers total) 7 users marked this as a favorite
You don’t have to live in secrecy just because your mom isn’t telling people. YOU need the support, and you are within your rights to tell people you are caring for your mom while she gets cancer treatment. You can keep the details out of it, but it’s really really toxic from a mental health standpoint to not be allowed to speak the truth. You can even tell her that you are going to start being open and ask if she would like to tell people first. Let her be mad at you! So what! You can’t do anything right anyway, and things are a million times harder when you are keeping someone else’s secret. It’s soul crushing.
posted by Bottlecap at 12:57 AM on December 14, 2022 [21 favorites]

I'm sorry you're going through this. I hope that the treatment goes well and that your mother is able to let go of at least some of her stubbornness.

It's one thing for her to try to avoid telling family back home. But I would try to get her to budge on telling her local networks. This is a big secret to try to keep. If people gossip, they are not worth worrying about. Hopefully she would find that all (or least most) are supportive. She needs all the support she can get.

I've had two relatives diagnosed with stage 3 breast cancer this year. One of them has said that she feels really awful for about three days after the chemo and then she feels quite a bit better. I think that there will definitely be times when you can get out of the house and you should absolutely do so. It is important that you take care of yourself. Whether that's through going to the gym, going to a support group, or taking up a hobby.
posted by kinddieserzeit at 1:15 AM on December 14, 2022 [1 favorite]

I would try to get her to budge on telling her local networks. [...] She needs all the support she can get.

And you also need support. If she has friends in the area who could help take on even a small part of the load for you, then she needs to understand that not telling them also hurts you. So I would work on finding ways to let people know - especially if they're people you have connections with yourself. And I do agree with the comments above that it might actually be okay and right to let some people know even against her wishes. It depends a lot on the particulars of the situation, but if she's going to force you into a parental role, then sometimes you'll need to make parent-type decisions, and it's not okay for her pride to force you to be a caretaker 100% of the time if there are other options.

Aside from her connections, are there any social services available where you live? Does her health insurance provide any in-home care or programs you could take advantage of?

I was looking into going to the gym or taking art classes but am already worried about venturing out of the house too much when she starts chemo.

I eventually want a partner one day and love travel and experiencing new things - that future looks unattainable right now and I'm grieving that, too.

I know there's a lot of uncertainty right now but going to the gym, taking an art class, experiencing something new - these aren't pie-in-the-sky things. Your own energy levels are a factor, but unless her cancer becomes extremely debilitating extremely quickly, it does not seem unrealistic for you to be able to get out of the house on your own a few hours a week at minimum. And if you can arrange some additional support you might even be able to take some day trips, weekend trips, and so on during this year.

You say that right now you're waiting for results, so presumably no treatments have started; if you have any energy, use this time right now to start doing some things you want to do, and don't worry about whether you'll have to cut back later. If you do then you do, but you might as well have it while you can. Take things as they come, without denying yourself because you think you'll have to eventually, and by the same token remember that just because something might be (or seem) unattainable right doesn't mean the situation will look the same six months or a year from now.
posted by trig at 2:04 AM on December 14, 2022 [7 favorites]

Are you financially able to afford a professional caregiver?

This will allow you to take some space from the day to day business of caring from her, but will also allow you to go out of the house in the knowledge that she has someone around to take care of her and who can contact you in case of an emergency.

Having been through this in different formulations with both my parents, I can say having a professional caregiver made a huge difference. Even someone who can come to relieve you for a few hours in the afternoon will help.

I also think that if as much as possible you can detach from what's going on with your mom emotionally/mentally that will help. My mom is bipolar (as well as other chronic health conditions) and I've had to reduce my expectations of her wellbeing. Now as long as her vitals are okay, her basic bodily functions are okay, she's conscious and eating and drinking and not in pain, I try not to worry too much about things she says.

I've gotten help from Facebook groups for carers, and I've been really open about my situation to my peers. So many people are in the same situation and don't really talk about it. Don't let your mother's insistent on toxic secrecy prevent YOU from opening up to people.

Also, do you have to live-live with her? Like, could you rent a place near her and go see her everyday?

Also as someone also from South Asia around your age who's had to do something very similar to what you are doing, feel free to Memail me if you ever need to chat.

So sorry for what you're going through. I have seen so many Askme posts along similar lines recently, I sometimes wonder whether we ought to form our own support group.
posted by unicorn chaser at 2:10 AM on December 14, 2022 [15 favorites]

Take things as they come, without denying yourself because you think you'll have to eventually, and by the same token remember that just because something might be (or seem) unattainable right doesn't mean the situation will look the same six months or a year from now.

Quoted for truth. trig is so right.

People tend to deal with uncertainty by making plans and problem-solving everything as much as they can as a way of attempting to reclaim a sense of control in a wildly uncontrolled situation. With so few answers in hand, you're naturally going to feel that you need to plan for every contingency, every circumstance, and that's going to wipe out your energy and sense of peace really quickly. Pay close attention to these patterns. You don't have to figure everything out all at once, and cancer programs do a ton of heavy lifting in getting you the information when you need it.

My advice as someone on year eight of a severe chronic illness (end stage renal with a transplant) and also as someone who supported my own mother this year through her breast cancer experience within the past 12 months is to care for your mother by first caring for yourself. Take the art classes. Keep making progress on your personal goals. You will not need to be home every moment of every day for a whole year.

What you see in television and movies, all the dramatic hospital scenes, all the tearful moments at home, that's just tv. Medical stuff can be emotional for sure, and intense sometimes too, but it's not like you're living a Lifetime movie all day every day. Eventually things kind of settle into normal, and you settle into it yourself. Your mom will, too.

I can also say that with my mother's breast cancer, the hospital provided a navigator, who was kind of like a nurse concierge who was my mom's direct point of contact and who led her through the process, checking in with her regularly, answering her questions. She was so kind and good. After more information is available, your hospital program may offer something similar.
posted by mochapickle at 2:24 AM on December 14, 2022 [9 favorites]

There are a couple books on Amazon, about how to deal with narcissistic mothers. It may help as it does go into coping strategies.

The one by Linda Hill I've read personally, and it covers some interesting aspects I hadn't considered before. Mind you I am an old guy and I read it as a freebie reviewer. There are a couple books similar to that.
posted by kschang at 4:22 AM on December 14, 2022 [1 favorite]

You're a good person. Let's start there!

There's a lot to say, but I think thing #1 is for you to get a great therapist to learn how to set boundaries. I see a lot of assumptions in your post that are not necessarily how things have to be. You can fulfill your duty as a daughter, and still have freedom to travel and enjoy life, and even move back to your home city eventually.

Also maybe there's more you know about the diagnosis that you're not sharing, but these days, some breast cancers can be treated without chemo, and without treatment that causes the level of disability you seem to be anticipating.
posted by haptic_avenger at 5:22 AM on December 14, 2022 [3 favorites]

I'm sorry you are going through this. This is hard.

As a fellow child of Indian immigrants, I'll just comment on this:
She is not telling anyone in her "friend" (frenemy?) circle because she is afraid of the gossip. She is originally from India and is not telling anyone back home due to fear of gossip and that they would see her as diseased/not welcome her into their home when she visits one day.

I know this comes across as irrational or bizarre to a Western audience, but this is *absolutely* a thing in traditional Indian circles, where cancer is highly stigmatized. (One qualitative study from Karnataka, for example.) I personally know someone who disinvited a close friend to her daughter's wedding, because the friend's husband died of cancer. Which is to say that your mom probably *is* acting rationally/semi-rationally, based on her own lived experience of seeing people gossip about or straight-up shun others.

That doesn't mean that you can't get support for yourself, though! My hospital's cancer center has separate support groups for families and care partners; is that an option for you? And 100% agree with those suggesting you schedule some time away for yourself -- while chemo can be very very rough on people's energy levels and fatigue, it's not usually the sort of thing where you need a 24/7 caregiver. If she does get sicker than anticipated (and hopefully not!) you can always drop the evening art class.
posted by basalganglia at 6:00 AM on December 14, 2022 [10 favorites]

I am coming at this from hindsight, with nothing but regret after being in a similar situation with a parent.

All the above advice about looking for support networks is stuff I really would have benefitted from. Near the end, even having a housekeeping contract for multiple short visits through the week made a difference. My parent was also stubborn and they became increasingly isolated, till the end.

It's ultimately up to your mother to decide how she's going to go through this, and you seem to know your boundaries re: the things you can/can't do for her. I hope you are clear-eyed and take opportunities for yourself. Again in hindsight, going out and walking the dogs was a great benefit for me, and the friendships and activities I maintained when I had time for myself turned out to be lifesavers. I do regret not seeking out supports for caregivers (just this summer I learned of a call-in network that can help connect the caregiver to community resources and counselling). Good luck, take care.
posted by elkevelvet at 7:59 AM on December 14, 2022 [3 favorites]

I (52F) have been in a really similar situation with my sister for 10 months now (after years of no contact). There was no amount of research that could have prepared me for how it first felt to provide care during cancer treatment.

People spoke a lot about boundaries but that meant absolutely nothing to me for the first few months because I was in shock & turmoil. I could not assess my boundaries until I had spent time caring for my sick sister.

The best advice I got was from @Stuka in this post: how to support someone who is dying
"there is helping and then there is helping. Unless you are willing to subordinate yourself to this person, to stand by and be ready to help them how they want to be helped, without hesitation, without question, don't bother"
That advice has helped me through the baffling & agonizing task of watching my sister refuse medical care & other common sense actions. So I guess it was learning to respect how she did NOT want to be helped.

I also had to learn that she was not in a place to work on repairing our relationship. I am quite sure we will not have a heartwarming discussion about how she wronged me & how sorry she is and how special our time together is. That was a hard pill to swallow. She is also, personality-wise, pretty easy to get along with now. I think knows I am her only person or she's too occupied trying to get better. At the same time she doesn't seem terribly grateful and would definitely not help me if I was sick. All that has been really confusing for me. Still, I am really proud of myself & feel honoured to be able to help another human in this way.

It's only been the last month or so that I have been able to quantify my boundaries. And she tramples right over them :). For example we have had a lot of tension around groceries. Even though she is feeling better & is quite capable she refuses to place online orders for groceries. I had to stick to my guns on that one but only after much reflection on whether she really is capable . Turns out she is and now we rarely talk about food and I feel much much less stressed.

I wish I did research community resources more. I just found a local cancer charity that has tons of programs (art therapy, yoga etc) for cancer patients and their caregivers.

I could go on and on and on here. So I will sign off with hugs (if you are in to them), warmest vibes and an invitation for you to message me if you ever want to chat. :)
posted by i_mean_come_on_now at 8:44 AM on December 14, 2022 [4 favorites]

I found the resources at The Negative Space to be helpful early in my caregiving journey. (Full disclosure, in the years after I found it, I became friends with Allison who runs it and now do a podcast with her). I know a lot of caregivers who use and love the ianacare app to coordinate help from supporters.
posted by bajema at 9:22 AM on December 14, 2022 [2 favorites]

Your mom sounds EXACTLY like my mom (sans the cancer, knock on wood). My mom is also from India and suffers from what I would almost call borderline paranoid delusions except I am no kind of doctor and cannot diagnose anyone. But yes, what you're describing sounds so familiar it made my heart hurt for you. I really know it's like to be around someone like your mother. I know what it does to me to provide care for my mother.

My advice would be to ask only what YOU need to make the next year most bearable for you. So you've made the decision to move to her house and provide care for her. You will be where you will be. She will be the person she is. These things are the hardscape of your life, unchangeable. They are also predictable. In a way it's sort of like having a very difficult job with many of the parameters quite well defined. Within the confines of these parameters, how can you best live?

- You expressed interest in going to the gym and to art classes. These sound like GREAT ideas and you should absolutely do them! While it's understandable that you are hesitant about leaving your mom alone during chemo, one of the things you need to realize is that you are a human being, not a machine. You will still have your own need for personal time, self-care, and a creative outlet. It is not humane to expect yourself to give up everything for a whole year while you care for your mother. I know that cultural narratives are strong when it comes to these issues: you are expected to be self-sacrificial to an extent that is impossible for actual humans. That is a recipe for burnout, though. Don't do it to yourself.

- On a related note, you also shouldn't sacrifice your dreams of finding a partner or traveling on the altar of your imagined version of caregiving. Our culture is pernicious about what it expects of women. You don't have to bow before it. It's okay to be a "bad" daughter who "abandons" your mom for an hour every day to go to the gym, a couple of hours every week for art class, a couple of nights every weekend to go to the bar, a full week every few months to take a trip on your own or with friends. Needless to say none of this is actually going to make you a bad daughter and none of this is abandonment. Your goal should be to build caregiving into your normal life, not replace your normal life with caregiving. Anything else is unsustainable. You may end up abandoning your mom sooner than you'd like unless you let yourself have a normal life still.

- One of the tasks you can probably already start on is to build a support system for yourself from resources that exist in your mother's town & area. Find out what benefits and assistance she is eligible for. GET HOSPICE INVOLVED RIGHT FROM THE START. Now is the time to amass all the forces that can possibly come to your aid. As her daughter, your best possible role is as the provider of emotional support and company. Free yourself up to do only that, because that is a big heavy task all by itself. Use all the resources that are offered, and all the resources you can possibly access. Get help from churches, temples, gurdwaras. Meal services for the sick and elderly. Respite care. Support groups for caregivers. Get everyone and everything you can on board to help out. Reduce the load on yourself. Your mother isn't allowed to stop you from seeking all available local support.

- When it comes to telling family, I would suggest you follow your mother's lead. I know from experience how awful my mom feels when someone pressures her to do something against her inhibitions. And as an adult human being she does have the right to medical privacy from her family if that's what she wants. However, please don't let her stop you from seeking support for yourself. For example, if you find you need your family to assist financially, then you can work with your mom to come up with a reason to ask for money. Hopefully your mother will eventually unbend about telling people the truth, but in the meantime, get creative about arranging for support.

- One thing you MUST force your mother to do is to get counseling for herself. This is the only thing I'm going to say it's okay for you to pressure and cajole and manipulate her into, if need be. She needs to have at least one other person who is helping her deal with all this emotionally. You are simply not the right person, because (I'm betting) you are too enmeshed with her emotionally. Too much history and lack of perspective between the both of you. A counselor/therapist for your mother is going to have much more success with helping her adjust, helping her open up. It's absolutely a part of caring for her to make sure she sees a counselor, just like you'd make sure she's fed and medicated appropriately.

- With everything else, let completely go. Let her eat whatever she wants to eat. If the doctor says she needs to eat X, THEN you need to offer her X and remind her that the doctor said to eat X (and then you can let it go, just mention to the doctor next time that she didn't eat X). Take a totally pressure-free laissez faire attitude towards her. You are not there to act like some hindi movie style nurse, you know the stereoptype, bossing her around and making sure she does this or that. You're there to help. You'll drive her places, you'll assist her with things she wants to be asissted with, and that's all. THAT'S ALL. You won't convince her of this or that. She will tell her relatives on her own time on her own schedule. If she's noncompliant with medication or whatever, you'll just remind her a couple of times and then let her healthcare team know. None of this is your problem, and you will trust her to handle her life the way she wishes to. It will really be okay. This is not your burden to carry.

- When it comes to hanging out with your mom, try to focus on doing things that you can both enjoy. Brisk attitude. Liberal bribery by giving her things she's always wanted a chance to do with/to you. Allowing her to complain about relatives will stress you the fuck out. Allowing her to whine about her current health issues will stress you the fuck out. Redirect to more fun activities instead and make it easy for yourself to be with her in a fun way. You KNOW she wants to teach you how to make pickles in her special way: so dangle that opportunity in front of her. You KNOW she gets high off of telling you celebrity gossip from 40 years ago, so watchsome goddamn Rajesh Khanna movies with her and let her talk all the way through them. You KNOW it will make her day if you let her give you an oil massage in your head/hair, so pull out your bottle of Parachute nariyal tel and enjoy!

- Your mantra, if I may suggest one, should be "soft". In the sense of, be soft with yourself. Make this time soft on yourself. The only way you can be the caregiver you want to be is if you fill up your own emotional and psychological tank with plenty of softness.
posted by MiraK at 11:21 AM on December 14, 2022 [17 favorites]

Find your boundaries and stick to them.
Chemo makes you feel sick. OK but you can still get yourself to the bathroom. Maybe she will just need rides. It sounds like she will need convincing. Get a source of fresh hummus for chapatis, get some boxed soups and instant mashed potatoes to thicken them. Keep a 2%Greek yogurt around, the kind that has 16 gms of protein per serving. Keep some panir cheese and peas around. Find some good Indian takeout nearby.

Your fears are valid, but not useful for now. Figure out what's needed, let her reminesce, even beyond you being sick of it, for now. This is how she talks out her fear, without seeming fearful. She is needing your unconditional love for now, OK she can have it.

If you have a love someday, they will need all this on a daily basis, she can have this that she can heal. You can give this, so if you lose her, you can heal from the loss, knowing you did all you could.
posted by Oyéah at 1:03 PM on December 14, 2022 [1 favorite]

You have been given so much great advice about logistics and emotions! I want to acknowledge this part of your post:

I'm not super young (39F) but childless and partner-less and can't help feeling like this means that my fate in life is just to be caregiver to my mother.

Oh gosh, this feeling is so real and hard and I want to send love your way. Even if people with partners and/or kids may not be any happier than you are (and arguably much less so sometimes), feeling like you got the short end of the stick in life sucks. I mean, even if they're unhappier and have more on their plate, at least they are lucky enough to have what you apparently so badly want. Life can be so unfair!!

I would also argue that, as someone in a similar place in life with similar disappointment, your mom's illness absolutely is awful but not a punishment or in any way related to your relationship status. Dating in 2022 is awful. There's always hope but the reality is quite depressing. That's hard to control but, as others have said, you can and should continue to live your life while you're there. Meetups and dates and the gym and whatever else you may enjoy! A weekly trip to a museum or a movie night or coffee shop visit for starters.

One way to look at boundaries is that we set them with ourselves. I have a friend who spent years of her life taking care of her sick and difficult mother who was frankly abusive towards her growing up. She eventually left to continue with her own life, and her mom passed a few years later. My friend has zero regrets for having done what she did for her mom and she has no regrets having eventually left. Your mom can refuse to ask friends for support but you can get your own support from your friends. You can see what you feel comfortable doing -- resentful is such a powerful emotion and a sign to step back if and when it starts bubbling up. I don't mean stopping the help but rather shifting little things. Yes there are cultural pressures and expectations for you to help but, ultimately, you are choosing to help your mom. That's very noble of you. Remembering it's your choice, that you're doing it with the best intentions, may help you get through some of the hardest moments. It certainly helps me when dealing with family stuff.

I wish you the best in slogging through the hard stuff that's coming: AskMetaFilter is always a resource, as you know, in case you want to reevaluate things and have a second opinion. I love Nedra Tawwab's work on boundaries and family as well as Shani Silver's reflections on being single. Both authors are enjoyable and empowering.
posted by smorgasbord at 1:42 PM on December 14, 2022 [2 favorites]

You're describing a person with long-standing issues with routine care (like mammograms), someone who "will take on the sick role eagerly, but will not accept outside help" and follows a self-restricted diet which has already caused weight loss. "She would be very happy if we lived together forever" means your mom is not going to happily see you off in a year's time. If at all possible, commit to helping her in-person through the initial "crisis" phase (surgery, first chemotherapy and/or radiation appointments), and then head home; a discreet, paid caregiver would escort your mom to "visits to the infusion center for nutritional deficiencies" -- a cover story for her cancer-phobic circle -- and provide assistance afterward.

Please take care of yourself, OP. You are a single woman in your prime earning years; besides covering your own needs and retirement, if any of your income supports or will support your mom, it will be especially hard to come back from a hit now. You're describing becoming your mom's full-time caregiver (as an unpaid second job), when it is an extraordinarily draining gig even in child/parent relationships with less friction. Working from home will make bright-line boundaries difficult during the day, and you have legitimate concerns about being able to leave the house regularly, for your own activities, in the evenings. Preserving your own health, which includes mental health, actually benefits you and your mom.

Oh, and: "I cannot make her have a more optimistic attitude towards certain aspects of her situation even if I know such attitudes are associated with better outcomes" -- not so. (Links to references; also, Barbara Ehrenreich wrote "Bright Sided: How the Relentless Promotion of Positive Thinking Has Undermined America" after her breast cancer diagnosis.) What's coming up is really hard. (I helped my mom when she had a double mastectomy, in her mid-60s.) If you have this pernicious positive-thinking mindset, you'll fall into the trap of constantly cheerleading... while never complaining, lest you harm your mom while she's healing. For a lot of reasons, this dynamic would hurt you both.
posted by Iris Gambol at 1:50 PM on December 14, 2022 [4 favorites]

Please speak with her doctors to get connected with social services and various caregiving resources that are available and stress to the doctor that your mother needs to be enrolled in some sort of psychological therapy program as she goes through her treatment. Your mother will be resistant, but you need to be supported if you expect to get through this without a lot of damage. If your mother is like a lot of traditional folks who have a great respect for physicians, your mother is likely to listen to the doctor's recommendation more than yours. You can fall back on "your doctor said this was important". Getting her properly connected to outside care and support services also will help you disengage from her and return to your own life when her treatment is over and she's recovered. If you're the only care person she tolerates, returning to your own life will be much harder.
posted by quince at 2:20 PM on December 14, 2022 [2 favorites]

My own mom passed away two weeks ago at age 67 from a rare cancer and my sisters and I had similar issues that you are facing (sans your mom's cultural background). Mom hadn't been to a doctor in 13 years- THIRTEEN. YEARS. until she felt so poorly that she essentially caved to us requesting she see someone. You are not alone in your anxiety or frustration.
First, "I have grieved for the relationship I wish we'd had and am trying to come to terms with a new future"; I'll just add in that I see grieving as a process that unfolds over time that doesn't necessarily have a set start or end point. You may continue to grieve, even if you have already wholly accepted that your mom isn't the parent you wanted. In terms of a new future, remember: her future is not your future, and also, your mom is still around. Your future is still up to you, and your mom is still here in the present. I had a lot of these types of thoughts upon Mom's initial diagnosis but reminding myself that she is still alive and on this planet and this will eventually pass for me and her was grounding. Deep breath.
Second, your mom's weight loss may have nothing to do with her food restrictions or choices- this is what cancer can do to people. And on that topic, have you considered that your mom may have put you in a position where you, the child, have been chronically parentified? I ask because you sound a bit like me, the Unfortunate Responsible Workhorse Child. Just a reminder: your mom is not a child, you are not her parent, and your mom is free to eat or not eat whatever she wants. You are also free to remind her that the doctor said to avoid XYZ food or to make gentle light-hearted comments like "I'd love to see the study showing lentils cause pus!" or whatever. But fundamentally, you have to learn how to respect her autonomy here. It is hard when you are scared, I get it. My mom refused morphine in her last week of life, stating she wasn't in pain, although the cancer had by that point spread all over, and really, it seems like she might have been experiencing some pain. But she also was the type who didn't like to cede control, and to morphine or not to morphine was her choice. So, you must accept your mom's choices.
Third, look into getting as much support for your mom as possible. This is highly contingent on finances, resources, local community, etc. We hired a nursing assistant to take care of my dad at night, for instance, when he was in hospice at home, the final week of his life (he died 2 months ago). This person as under the table and not cheap, but it was extremely so worth it for us to get sleep. Does your mom's medical system have Patient Advocates? Can you reach out to your local Area Agency on Aging and see if they can put you in touch with various resources? I found our night assistant on a random list that some non-profit emailed me after I made like a million desperate calls to lots of places, as my parents lived in a rural area and resources were few.
Does your mom have advance medical and financial directives in order? Get as many of her bills on auto-pay as possible for now. If she will be in the hospital for extended periods of time, some internet companies, for instance, have Seasonal Pause that could help her save some $.
Your mom might try to push your buttons to get a rise out of you. Or she might say mean things. She is scared and in pain. She is probably angry. She is lonely. She is going to change, to some degree, in response to this situation. When she makes an unwelcome remark, try to grasp at her potential emotion before reacting - easier said than done. For instance, after Mom's colostomy surgery, we were in her home and I was cleaning. She loved to boss people around; her sitting there, recovering from this surgery and watching me clean, enabled her to start micromanaging. I responded, "Mom, I know you are bored. However, if I need help, I will ask for it. Thank you." And that actually WORKED, to my shock.
Read up on how hospice care works, and don't let anyone try to push for hospice sooner than you or your mom feel comfortable, here's why:
If your mom belongs in a skilled nursing facility, it is better to keep her there, or in the hospital, or wherever. Do not let anyone offload their professional duties onto you, the unskilled (free) offspring. Seriously.
Look into bereavement counseling in your area.
Don't give up your own life.
You are not responsible for your mom's life (or death, or how she dies).
One thing at a time. One day at a time. One step at a time.
posted by erattacorrige at 4:03 PM on December 14, 2022 [7 favorites]

Oh also - to answer a question you asked and I didn't address: how did I reconcile my dreams for myself?
For me, for my mom's passing, I took a shitload of mushrooms in the Netherlands before returning home to care for her. And the mushrooms helped, they enabled me to at least dissolve some blockages of trauma I had with her. Of course, she was still her, and I learned a whole host of new horrifying information about her behavior in recent years that gave me new trauma lol so I guess another Netherlands trip is in order for me. But basically I tried to work toward love. I read a lot of Rumi. About acceptance. "There is a field / out beyond right and wrong/ I'll meet you there" - to paraphrase a Rumi translation. But dreams? I don't know. I'm 33, I still have lots of dreams, I feel freer now that my parents are both dead in the span of a few months, all of a sudden, and some psychic weight has evaporated. I don't feel bad to say it because I saw the peace they worked toward as they did the work of dying. Dying is work. And when someone dies, the work is done, for that moment, in this form. My dad had aphasia so I don't know what exactly he was thinking as he died but he often cried and we communicated through a hand squeezing system, where I'd ask him to squeeze my hand if he was too hot, etc etc. We discussed his acceptance of his death this way too. My mother was a lot more obstinate and controlling until she just couldn't be anymore, and I saw her the week before she passed and she had one foot Here and one foot in the Other World and I finally got to see some authentic parts of her, in her death-speech, and it was extremely sad. But she talked about needing to find a Key, needing someone to take her Home, asking if I would show her how to get there, if I would stay with her, being stuck on an elevator, seeing people in the room who weren't there, going back to her mother's house, etc. This day was extremely moving and bittersweet for me. If you have a difficult parent, someone like it sounds like your mom can be, if you have an avenue into her vulnerabilities - and it really might take up until the very end, if at all - through this process, it can really heal up parts of you too- to see the Whole Person, not through any flaw of your own where you saw your parent as a hero or immortal, but through your mom's inability to be authentic and vulnerable in front of you, anyone else, and possibly even herself. Try, if you can, to be open in those moments. I asked Mom lot of follow up questions on this day. The answers I got were illuminating. I filmed it all with my phone.
But yeah as for dreams I'm not sure. You have a lot ahead of you. I'm grateful my parents are dead when I'm still fairly young and I have everything ahead of me and I don't have to worry about dealing with this when I was like 70 and they're like 98, which is a situation an acquaintance of mine is in.
Death is not the enemy. It is a portal. It is a transformation. It is an opportunity for Love, for you and for her both. But you aren't under any responsibility to do anything in particular. Try to listen to yourself, your poignant sad thoughts as they rise up. Or anger. Or absurd laughter. Try to ground yourself against fear.
I will say this, my biggest fear when both of my parents died was that they felt scared and alone. They had lived their lives feeling that way, a lot of people do. But I do not think, after watching them and helping them die safely and peacefully, that they felt fear at the end. I suspect, just suspect, they felt total Joy and utter Peace. I wish the same for your mom, and for you. You are not alone. Neither is she.
When we lose something, I think it works out more like a swap. When we've lost something, a new thing takes its place. So, when you've lost something, what did you gain in that transformation? I'm also working on figuring this out now. You are never alone.
posted by erattacorrige at 10:14 PM on December 14, 2022 [7 favorites]

Hi all,

OP here. Since posting this question, things have taken a turn - my mom is currently admitted to the hospital for GI issues, which turned out to be the result of "innumerable" liver mets. It's the weekend and we have no guidance from docs on where we go from here, though I know Stage IV with this many mets is not great. We don't have a PET yet to tell us where else mets may be.

I feel numb and the last 24 hours have felt like a daze. If anyone has more thoughts given this information, I certainly welcome them.

Mostly I wanted to update to say I cannot start to describe my gratitude for all of your comments. I appreciated the challenge of my beliefs regarding my mom's feelings on the cultural acceptance of her situation, as well as the thoughts on positivity (which I'm realizing I have conflated with data on spirituality.) I have to check myself on my preconceived beliefs because they're not serving me, or my mom.

Mostly it is such a balm to feel seen and understood. Thank you.

also, @unicorn chaser I see what you mean about the number of recent askme threads on this subject, and a MeFi support group may not a bad idea...
posted by KarmicKintsugi at 10:58 AM on December 18, 2022 [6 favorites]

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