agonyaunt | (no subject)

(no subject)

Dear Prudence,

I (36M) have been married to my amazing wife (38F) for eight years with no kids. The most common issue that comes up for us is my mom.

Unfortunately, my mom is widowed as well as disabled by a progressive genetic disorder and has steadily gotten worse, needing more care as time goes on. I’ve been taking care of her (and my dad until he passed) since I was 19. She insists on staying in her own house for as long as humanly possible (she says things like “I’ll leave this house when they carry me out feet first” all the time). Also unfortunate is the fact that my wife’s relationship with my mom has degenerated over time. About 18 months ago, they started fighting every time they were in a room together, accusing each other of yelling, being abusive, etc. Around a year ago, I’d had enough and told my wife to just stop going around to my mom’s house and that I’d handle all the caregiving myself. I wanted to give my wife a break, and expressed that this was to be a temporary solution so that she could rebalance her mental health and come back feeling better and more productive.

I’ve also had dozens upon dozens of serious talks with my mom about how some of her annoying behaviors are really hurtful to my wife. Mom keeps pledging to do better, but her genetic disorder also affects her brain and her ability to form new memories, so the conversation only sticks for a couple days before having to have it again.

Well, now it’s been over a year and my wife has only been to my mom’s house three times, only on major holidays, and only when I’m there, leaving me alone to take care of all the caregiving, housekeeping, accounting, meal prep, etc. They’ve also exploded at each other every time my wife was there. Prudie, I can’t keep doing this by myself forever. We’ve been able to hire two lovely ladies to help out with caregiving a couple days a week, but we can barely afford the amount of help we have now, and the rest of the days of the week fall on my shoulders. My wife can see how hard this is on me, she sees how I come home in shambles after working a full-time job and then spending my evenings caregiving multiple days a week, and keeps insisting that I need a break. I know I need a break! But the only way I can get one is if she takes a shift or two at my mom’s so I don’t have to, and she flat out refuses to do so.

So we fight about it. I tell her honestly that I expected this solo situation to be temporary, and that my resentment at being abandoned to perform all the caregiving has been growing steadily. She throws up her hands and tells me to hire more people that none of us can afford. I feel so stuck in this loop. Coming home after double shifts leaves me drained of energy to work on our own home, but I still manage to do my fair share around the house and then some, but my wife also gripes that she has to do “SO MUCH around the house because I don’t have energy for it.” Yet we take even turns doing dishes, laundry, bathrooms, picking up, dusting, and I’m the only one who does any yard work, cleans the floors, handles home/car repairs, etc. Every time we talk about this issue, she gets livid, accuses me of wanting to leave her, and the tension lasts for weeks. I don’t want to leave, I just want some help!

— Exhausted

Dear Exhausted,

I know you’re feeling desperate, but you don’t actually want someone who has exchanged allegations of abuse with your mom caring for your mom. I know you don’t! The current situation isn’t sustainable, but somehow forcing your wife to take on some of the care work won’t be good for anyone. If you need to pull back on the floors, car repairs, and yard work at home, so be it—especially if it makes your household division of labor more equal. Think about what you would do if your wife didn’t exist. Is there any chance there’s an affordable assisted living situation? Are you connected to any churches or community organizations that could send a volunteer? What about a local group that supports caregivers? Your mom needs more support from you, not from someone who can’t stand her and isn’t interested in helping her.

https://slate.com/human-interest/2023/04/dear-prudence-drinking-revelation.html

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LW, I'm saying this in the nicest possible way: your wife did not vow to take care of your mom with you. Sure, in an ideal world she'd help out - but in an ideal world, the two of them wouldn't hate each other. In an ideal world, your mother would be able to care for herself. This isn't an ideal world.

Dear Prudence is quite right. LW needs to do whatever it is he'd do if he wasn't married at all. I don't know what that is, but since he can't force his wife to help, he's gonna have to stop trying to look for solutions that involve her helping.

LW needs to do whatever it is he'd do if he wasn't married at all.

I suspect this is the problem. Wife wants LW to have some semblance of his own life, which includes a relationship with her. I suspect that, were he not married, he would be living with his mother, devoting all of his time to her caregiving, and have no life of his own.

I agree with you. My once and maybe future boyfriend did prccisely that because he's not married, and I am (complexly) okay with it because we're not married. I would feel differently (ahahah) if we were married.

Yeah, there's lots of good advice in these comments for how LW can better manage Mom's care, but what I wanted to say is: the problem outlined in this letter isn't the amount of work you're doing at home, or the amount of work your wife isn't doing with your mom, it's that you don't mention anything about your relationship with your wife other than work.

Some of the issues in your marriage may be that you aren't working *together* anymore, even in the household, you're doing separate work and not supporting each other in it, and that could maybe be partially resolved by renegotiating mom and house care and how the two of you talk to each other about it. But LW, the underlying problem is that you need something in your relationship with your wife that isn't about work, even if it's just getting to snuggle on the couch together, heck even if it's just long phone calls from different houses where you share nice conversation, and it sounds like not only are you not doing that, it isn't even in your game plan to ever try to make space for that. If you want to be married you have to stack up good things together and you aren't doing that, at all, and if you aren't willing to deprioritize any other things for that, if you can imagine squeezing out a little bit more energy and time for more housework, but not for being kind to each other - maybe you need to not be married right now.

LW you told your wife to stay away from your mom

To be kinder because I see this happening all around me — I think a lot more people are living longer but not better (especially with cognitive decline eroding many oriole’s tact and diplomacy) and their family members simply cannot do the entirety of the needed care. I really hope the mom has a case manager — LW needs professional assistance r accessing every possible avenue of assistance

If I were the wife I would try to do as much of the home upkeeps I could but nothing says that she isn’t already doing that.

Honestly, if Mom is not capable of forming new memories it sounds like Mom needs to be in full-time care. Which sucks, not just because it isn't what she wants but because most of those places are sucky. But LW has been caring for her since adolescence, and this is a disaster waiting to happen. Heck, it's a disaster already happening, but it hasn't come to its inevitable horrifying endpoint yet.

That stood out to me too. Of course Mom wants to stay in her own home till they carry her out feet first, and she apparently doesn't care what that costs her son. He has been trained to put her first.

I am surprised that the son's marriage has lasted this long. Depending on the mother's health, she could be a full-time caregiving job for decades.

I really wish that Prudence had pointed the LW at some HELP (most US counties now have “one-stop” websites like Area Agency for Aging, where his mother could get connected to caseworkers, and he could find out what types of assistance she may be eligible for.)

Many people don’t know about these resources.

It may be that staying in her current home is insupportable — that sucks, but the SITUATION is unsupportable, and it’s breaking the LW.

And none of this is on the wife.

I also wish Prudie'd pointed out that it's not okay that this LW has spent their entire adult life as their mother's primary caregiver, and that their own not-okayness is probably why their expectations for the wife are so out of line with what wife expects. And that LW is probably grieving their mother, as well, as memory loss and brain damage have horrible impacts on kids.

I'm not saying that it's not okay in the sense LW should stop; sometimes the things we have to do are things that are unbearable and unsustainable. But LW needs to step away from mopping and toward some kind of support, or LW will crack down the middle.

Yeah, I saw that and reacted to it, as well.

My daughter and I BOTH have a degenerative genetic disorder (thankfully, more physical than cognitive, but it still sucks), and we help each other out -- I'm currently putting in extra labor which is very hard on me while she's recovering from surgery, but we're also doing everything we can with the paid assistance we can afford . . . but neither of us wants the other to sacrifice themselves to a lifetime of caregiving.

I think it's dysfunctional (and probably abusive) as hell that the LW's mother KNEW she had this condition since his teens, at least, and didn't make arrangements for her own care that didn't involve it taking over his entire adult life.

(Yes, eldercare and disability-care options suck in the US, but it's her responsibility as the *parent* to do everything she can in order to allow her child to individuate and have independence, and things like "I won't leave my home unless I'm carried out feet-first" show a horrifying disregard for his well-being.)

Yeah, exactly. My sister it turns out died young, may her memory be a blessing, but we didn't expect her to, and I had a minor unofficial support group with several friends my own age who had siblings who'd need care for their whole lives. It was funny-not-funny how much we all had similar expectations of ourselves (of course we'd do it, of course it would often suck or be exhausting, of course we'd need to rely on other healthy loved ones but we'd try to minimize how much we did), and yet expectations from outsiders were bizarre. Some people clearly thought I should be with my sister all the time even when she had care help and if I wasn't it meant I didn't love her. Other people flat out told me it wasn't my responsibility and I didn't have to take care of her. (I was like, thanks? I guess? You're a complete monster but thanks for the happy families advice?)

It seems like LW never got any kind of support from other people, the kind of support that even says "yeah, you have to do it, but it sucks" or "but nobody else has to do it with you." And you're right, if the mother was cognitively capable when he was younger, she didn't make any kind of lasting arrangement.

And you are also totally right about finding some kind of paid assistance. My mother was an absolute rockstar at navigating all of the different aid programs, and we could never have given my sister the resources to have a relatively comfortable adulthood if it hadn't been for all of that. LW needs to know how to navigate state and federal resources, how to assess nursing homes and memory care, how to get reimbursed for a PCA, how to find an affordable program, all of it.

I’m so sorry about your sister’s early passing — may her memory be a blessing.

People dealing with disability, serious chronic illness, and age-related issues REALLY need a dedicated navigator to help them deal with the system — I spend so much time and energy on phone call after phone call, trying to manage both of our care (and not run out of meds, and get the financial stuff dealt with, and and and.)

I think LW really needs to ask himself honestly, whether the level of care his mother needs is beyond his capability to provide. If it is, then perhaps it's time that his mother move into a care home.

Think about what you would do if your wife didn’t exist.

At this rate, LW may not be married much longer if the situation with his mother continues.

Yeah, well, LW's been caring for his mother since the age of 19 and, let's be honest here, that means he probably was taking on more than a reasonable share of her care before he was an adult.

At this point, he honestly may not have the perspective to realize that this is not working and cannot be made to work.

Yes, LW's taken care of his parents for almost half his life, it's basically all he's known. LW desperately needs an impartial evaluation of the home care situation by someone: his mother's physician if she has one, or a home care agency or something. And then follow that advice.

He's not going to get that evaluation, because a. that'd mean taking a moment to step off the treadmill and think about things and b. I bet on some level he does know what they'd say, and the thought undoubtedly makes him feel like a bad son.

My heart kind of aches for everyone here. Nothing in this situation is sustainable, and all of these people are in so deep they can't see any way out.

I really hope that we can all fight for much better care for disabled and aging folks. The LW shouldn't have had to do this. It shouldn't be so goddamn expensive.

Insisting you are not leaving your home when it requires someone else to give up their life to keep you there is completely tyrannical, abusive behavior and LW’s mom has been trampling on his ego probably all his life, and so of course he’s dismayed that his wife refuses to be trampled on as well. And when he tells her to “rebalance her mental health” and then come back to do The Work of serving the Tyrant, he is dishing out the abusive controlling behavior he has been subjected to all his life. Note mom never stops saying no one is taking her out of that house--beating him over the head with that mantra at the center of this family cult. My mom made clear that was her wish as well, and I had a talk with my mom when my brother who lived with her was freaking out on all the poor hospital staff, and my sticking up for my brother’s needs was what she wanted most from me, and she acquiesced. LW’s mom needs to go into whatever assisted living or care facility medicare, insurance, and selling her house will pay for and I have a hard time caring how miserable she might be about it, as long as her victim is removed from her reach. LW needs so much therapy he’s not going to get in time to save this marriage. The poor spouse is just not in a position to have The Talk with LW’s mom--maybe she tried to tell her he was being stretched too far in caring for her 18 months ago and that’s when it all when south with them. My advice would be to ask if there is any sibling, cousin, friend or neighbor who could speak to her on his behalf on his inability to care for her and take care of his own emotional health and needs, though this one is likely not to listen to anyone and LW is not likely to ask anyone for this help while he’s invested in his good son role. It may take him having a breakdown and being hospitalized for someone in social services to step into this untenable situation and get her moved into a care facility. The sooner he has this breakdown, the better the possibility that LW’s marriage will survive it. But the controlling behavior he is already trying to exert on the wife because that’s all he knows makes me think
this marriage is doomed. He needs too much rebuilding of his worldview to not pass on the abusive behavior he has endured onto anyone he's partnered with for many years, and he’ll need some really good therapy to ever get there, and that good therapy is so hard to find. From how he related his mother’s dictum that she is not leaving, his awareness that this is not reasonable and that her dictum is rife with unspoken demands on his autonomy is almost surfacing. If someone he views as an authority can reinforce this, maybe there is a chance he could have a break through soon enough to save his marriage and respect his wife’s boundaries and needs, but Prudence totally missed being that voice for him and that’s a shame. The mention that he can’t control his wife did not go nearly far enough to be helpful.

Edited 2023-04-24 06:48 (UTC)

Even without the cognitive lack, a lot of people in the type of mindset that make enmeshed and emotionally abusive demands of their children are not really capable of realizing that it's unjust without some kind of radical shock or upset. They are often survivors of a similar abusive upbringing with a lot invested in denial.

I would argue that most all abusers believe on some level that their acts of abuse are just and even if they are aware they are being abusive and wrong, they believe the abused owe them their tolerance. That is what entitlement means. Mostly they do not think at all of the impact of what they ask of others has upon those others. Maybe you can attribute her assumptions that her 19 year old son will always be her caregiver to cognitive decline having started 20 years ago, but I don’t get that from this account, and I do ascribe responsibility to her just as I ascribe responsibility to LW for controlling behavior towards his wife and hoep he gets the help he needs to see it. All these behavios may not even reach the level of denial. Yes, it’s a cycle and most abusers are survivors of abuse. And yes, regarding chiidren as emotionally beholden to their parents, as property of the parents, as indentured caregivers are societal norms. It’s just weird that the lyrics of Sweet Honey in the Rock’s ‘On Children’ I was singing with the Common Woman Chorus in the 80’s based on the poem of Kahlil Gilbran are still radical: https://poets.org/poem/children-1

If the wife had written in, I would have said,"Can you take on doing research for available options? Home care, care homes, caregiver respite resources?" Gathering information is something she can do without coming into contact with her MIL.

Since it's the husband who wrote it, though, everyone else has already given the good advice.

My own MIL (long before we had our FIL's degenerative diagnosis) Stated QUITE LOUDLY at a family meal that they would NOT be going into assisted care. And expected a murmur of "of course not, we will take care of you!" in response. And I was the lone dissenter. I simply stated that we don't know the future and that it might be possible that they would need more care than family could give. I gave a few examples from my own family and simply said "if it can be done, that is one thing, but if it can't be done I won't let myself or spouse break ourselves and our lives to fulfill your wish of living inside your home if that is all it is. a wish."

I am often the one who does the non-emotional, rational planning. I am also labeled as the uncaring one. But I often feel like many families don't do any long term planning when things aren't emotional. They end up flailing and making things up on the spot with duct tape and glue when there could be plans in place to prevent the collapses that happen.

This LW needs to get an assessment. He needs to go with his mom to a doc appt and start asking pointed questions. He needs referrals and options other than Just Him or Just Him and His Wife. They need help and if he doesn't do the work to find it he is going to find himself alone at the end wondering what went wrong.

Edited 2023-04-24 15:49 (UTC)

This is one of those letters where what is really needed is a systemic overhaul of our national healthcare system. It is absolutely past time to move to assisted living or an unskilled level at a nursing home, but who knows what is available where this family is at. Not all areas have the best services available. That said, his mom probably qualifies for Medicaid in the US as long as she's been disabled, and a nursing home would probably cost less than the level of in home care she needs.

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