Should I stay or should I go?
July 16, 2014 6:59 PM   Subscribe

So here's the thing. My dad just got diagnosed with ALS-- Lou Gehrig's Disease, That Thing That Stephen Hawking Has, you know the drill-- and I have a moral dilemma.

I've been living with my parents for about a year. My mom has rheumatoid arthritis, and has had it for about twenty eight years. I moved in because of a breakup, where the dude I had been with for my entire adult life got the apartment, the dog, the everything. Pretty soon after I moved back in as the original boomerang kid, it became apparent that my mom wasn't precisely able to really function on her own. She'd survive without me, but basically? If I don't cook, she'll live on bags of kettle corn. Dad works nights, has four days off every two weeks, makes sure she eats when he's home. She can still drive, which she loves and which she's scary good at, so that's pretty great.

Here's where it gets hard.

My best friend and I have planned on moving to Chicago for, oh, two years now. The plan was to go after the first of the year, when we'd have probably 10k between us. This is probably my last shot at happiness, because I am miserable here, and Chicago is, well, the place I have always wanted to be. I also owe this woman my life, I think, a few times over. I sincerely do not want to leave her in the lurch.

Also-- ugh, I'm sorry, I said 'dad' up there, and he is, but. My biological father, whom I loved, died of an inoperable brain tumor when I was fifteen, in 2001. (I am old for how pathetic my life is, I know.) I didn't really deal with that well, and carry a massive amount of (admittedly irrational) guilt over how I handled it. Or rather, didn't handle it. I let him down, failed my gunslinger test, whatever. In an intensely fucked-up way, I feel almost like this thing with my (step)dad is a chance to do it over and get it right this time.

They're going to need in-home care, my parents. Sooner, rather than later. They do not have the money for it. Dad wants me to go to Chicago, insists that he and Mom will get by, not to leap on this particular grenade. Like, the only thing I think would be worse for him than dying in this stupid, cruel, dignity-robbing way would be for me to burn my potential future to take care of them. But there's nobody else. My mom can barely take care of herself. How will she manage herself and my dad when she's already pretty much crippled?

I'm really frightened. This diagnosis came down Monday, and I know it's still early days. Am I overreacting? Making a crisis where one doesn't exist? Do I stay, fuck over my best friend, and hurt my dad to make sure that my parents are okay? Or do I abandon them to sickness and coping with their bodies slowly shutting down? If I don't do the right thing it's going to eat at me until I'm dead. I just don't know what the right thing is.
posted by dogheart to Human Relations (29 answers total) 4 users marked this as a favorite
My advice is to not decide, not right now. This is a huge thing and you need to let it settle out for a while, both emotionally and logistically. Keep doing what you're doing right now - saving money, having the vague plan to move - and see what happens over the next few months. I think the right answer will become more obvious with some space and time.

I'm really sorry. I know this has got to be terribly hard. Hang in there.
posted by something something at 7:10 PM on July 16, 2014 [13 favorites]

Go to Chicago, but before you do - find a social worker/patient advocate/eldercare expert and help put together a plan and get your parents in touch with resources that they'll need. They may qualify for in-home assistance and various other things that can help them to stay well taken care of and independent for as long as possible. Even if they don't have money, there are programs that they could get themselves qualified for, but there may be hoops to jump through. You have enough time between now and the end of the year to learn a lot about this stuff and also get them set up for when things start to deteriorate. You may want to start by asking your parents' doctors for referrals to people and organizations that can help. And, if you add your location, maybe some Mefites will be able to give you better information for your locale. Good luck and enjoy Chicago, it's a phenomenally great city.
posted by quince at 7:11 PM on July 16, 2014 [26 favorites]

you really can't base anything now on the things you did when you were fifteen. fifteen is a markedly fucked-up age WITHOUT the stress of going through the death of one of your parents. you've learned, you've experienced, you've grown and you've changed so much since then.

first of all, how advanced is your father's ALS? if it's very early stages, he may, in fact, be what he considers okay. but the first thing i would do, really, is talk to your best friend. best friends are usually very understanding, that's why they are what they are. they understand that life is what happens when you're busy making other plans, as it were. i'm sure she'd be okay with seeing how things stand in a few months, so that you don't have to make the decision now. yeah, it's july - but there's still a bit of time. see how things shake out and go from there.
posted by koroshiya at 7:13 PM on July 16, 2014 [6 favorites]

Seconding the idea of letting your thoughts/feelings about this settle a bit before deciding. As part of this you might want to do some research and try to sketch out some time lines for when your parents will need more intensive help. It sounds like they're ok for the moment, but I don't know what the progression is like for ALS -- will your dad still be pretty self-sufficient for a few months, a year, a few years?

If you have an idea of the time line you can consider other options like moving to Chicago for a while and coming back.
posted by duoshao at 7:19 PM on July 16, 2014 [2 favorites]

The only advice I can offer that is applicable to either choice: don't ever think it's your last chance for happiness. You will get through it-- whatever that "it" may be. Be kind to yourself.
posted by chloe.gelsomino at 7:19 PM on July 16, 2014 [21 favorites]

I'm so sorry you're dealing with this, it's an incredibly hard thing. Try to remember that you're all dealing with something huge and scary right now, and nothing has been worked out yet, so it's doubly scary and huge. Once you've all had time to think and talk through this diagnosis, and once you've fully explored the options for supportive care, you'll be able to make better plans and decisions once you've all (individually and together) processed this. The "how much do you want me to help you" conversation will probably be an evolving one, and that's okay. It sounds like you love your parents and they want the best for you, so you are starting from a solid place.

I suspect that part of the answers you'll get will depend on what sort of state support your parents can get (in-home care, disability, etc., which may depend on where your parents live), and on what sort of timeline your family is looking at. If your dad can expect to be mobile and self-supporting for the new two, three, five years, then you can go to Chicago and you all can plan and problem-solve for the future together from afar, without feeling like you're abandoning them. I know that this feels like the end of the world, but it could well be that your dad feels mostly fine and wants you to go follow your dreams while he's still able to care for himself. Later, the plans can change if they have to, but there's no point in you and him both being miserable while you sit around waiting for his disease to progress. Plans change anyway, for a million different reasons that have nothing to do with medical diagnoses.

On the other hand, if he's dealing with a next-few-months, next-year kind of medical crisis, then you may want to delay your Chicago move until you're satisfied that both of your parents have a sufficient support system in place. I'm sure your friend, if she's that amazing, will entirely understand.

Whatever happens, and whatever you end up doing in the long run, try to remember that nothing is ever your last chance at happiness. That doesn't mean you shouldn't pursue the things that will be best for your present happiness and mental health, but there isn't ever just one way to be happy and there isn't ever just one opportunity for it. You and your family will find a way to make this work.
posted by you're a kitty! at 7:22 PM on July 16, 2014 [5 favorites]

I agree that it is too soon to make a decision, you are still processing what this means for your family. I lean toward you going to Chicago, I think this is a step you need to take and that is the reason your "dad" is encouraging that course of action, too. That doesn't mean that you can't help, just that you have to rethink what that help looks like. Being a primary medical care giver can be all consuming. If you go down this path you may be putting your plans on hold for a long time. That is assuming a long-term diagnosis, of course. Once you know more you might want to ask questions based on that information and maybe even include your location to help you locate resources.

I really feel for you, I know saying "wait" may seem to be ignoring the big thing right in front of you, but I honestly believe that a deep breathe is exactly what you need, paired with your favorite escapism or treat. This is hard and you have been dealing with quite a bit lately, it's okay to take care of yourself for a moment.
posted by dawg-proud at 7:31 PM on July 16, 2014 [1 favorite]

Your dad and your mom both will need way more care than you can provide. As just one small example, your dad will likely need two-person transfers, which means two strong-ish people to help him in and out of bed, among other things. This will happen sooner than you think, because of how quickly ALS typically progresses.

What you need to do is, call whatever the senior care line is in your state, and follow their recommendations. There are state programs that assist the elderly and the disabled with in-home care, or placements into assisted living or nursing homes. You can do most of this stuff over the phone, however, get a POA (power of attorney) done before you go, because it requires everyone to be present. Most likely, you will need both a financial POA and a healthcare POA (and maybe also a healthcare directive, unless the healthcare POA for your state includes those healthcare directives).

Also, figure out your parents' financial situation. For example, you say they do not have money for in-home care, but do they own their house? Here is a scenario to help you understand why this is important: here in Minnesota, there are small residential care homes that are way, way better than nursing homes, and some will accept a resident if they have at least 3 months of private pay, before they switch over to elderly waver (state money). These homes won't take a resident if they are on elderly waver from the start - so even $10k-$20k can make a difference. This is just one small example of why you need to plan in advance.

To sum up: have a very detailed account of everything your parents own (but keep that information to yourself so the state doesn't end up taking everything before kicking in any help), then call the senior care line, and talk to as many people as you can.
posted by rada at 7:34 PM on July 16, 2014 [14 favorites]

I live where you live - we are neighbors and I absolutely love this town but I am older and settled and have come to it after a life around the beltway. It's a great place for a lot of reasons but not the best place to spend your 20s.

Our job as parents is to launch our kids off to parts unknown. If you stay with us, we fail. It would break my heart to know my kid was languishing because of me. Do what your dad says - go to Chicago.

(Check with Council of Community Services downtown - they're a nonprofit clearinghouse and senior services are among their programs.)
posted by headnsouth at 7:49 PM on July 16, 2014 [13 favorites]

Fucking over your friend is the least important consideration. Fucking over yourself is far more significant. And that might even mean you stay, for fear of beating yourself up forever. But whatever you end up doing, wherever you end up going, you have to live your life.

There's a lot of very good advice upthread, I don't know much about ALS, but I think it's clear that you won't be able to care for them yourself in any case. Spend your time arranging the outside care they'll need, whether you're present or away.

If you do decide to move cities, try to make sure you get yourself into a position where you can visit regularly.
posted by The Monkey at 8:00 PM on July 16, 2014 [2 favorites]

Go to Chicago. ALS moves fast and is going to be too much for you and your mom to handle. Dad will need to decide on a home to finish his days out in. If he starts shopping now, he may be able to find one that will take mom too. It's a terrible situation. If you stay and be their everything, it still won't be enough to save them from this.
posted by myselfasme at 8:23 PM on July 16, 2014 [11 favorites]

You have some time to turn this over in your head. Give yourself some time to accept and adjust before you make any decisions.

I do not think you are fucking over your friend if you decide to stay to help take care of your ailing parents. That isn't a reasonable way of framing what's happening here. Talk to your friend.

If it was me, I'd stay (*). However, you shouldn't try to be primary caregiver. That will use you up if you attempt it. See what you can find out about financial assistance for assisted living or home health services. Are your parents are old enough for Medicare, poor enough for Medicaid, etc.

(*) If there was time to move to Chicago and come back when things got bad, that would be a better choice, but it sounds like there probably isn't that much time.

My condolences.
posted by mattu at 9:19 PM on July 16, 2014 [2 favorites]

Can they move to Chicago with you? A major city is going to have better health care options than rural Central Virginia.
posted by Jacqueline at 9:19 PM on July 16, 2014 [2 favorites]

Speaking as an only child who only had one ill parent: I'm the asshole who's going to tell you not to go if you are literally the only human being around to take care of them. I say this because given the situation, at best you are going to need to go back and forth from Chicago a lot to deal with things they can't handle any more and I'm not at all sure you CAN escape if you try right now. I don't know if you can afford frequently returning home to deal with medical drama and emergencies. Or if your parents have the insurance to pay for a nursing home or in home care (I'm guessing not). Or if you can move them to Chicago, which would be the best option I can see, but probably the impossible one.

Is there anyone else in your family who lives nearby-ish that'd be willing to take on the daily stuff? Do your parents have good friends who would? If so, maybe you can swing it. But in my experience (and lots of caregiver support group meetings), it's the daughter who lives closest to the parents who ends up doing all of the work. Even if you are somehow not primary caregiver every single day, someone is going to have to do power of attorney and come when someone goes to the hospital and deal with the home sale and all that jazz. Plus there's the guilt factor if you aren't being their perfect everybody's everything.

I feel terrible saying this because I know what it's like to be trapped and yeah, this is probably your last chance to go, go, go. But.... I can't realistically tell you they'll be okay if you go, either. I'm kinda with you're a kitty! on this, because if you have a few years before everything goes way downhill, maybe you can swing it, but if he has a steep swift decline, it'd probably be easier to stay until he dies and then figure out how to do caregiving for your mom. Of course, the joy of asking doctors this kind of thing is that they usually have no effing idea. :(

I'm really sorry. That I'm saying this and being a dreamkiller and that you're going to have to go through this.
posted by jenfullmoon at 9:57 PM on July 16, 2014 [4 favorites]

I would keep in mind that although at some point you must choose between staying and going, your choice is not to fuck someone over or to abandon someone. Those are perceived consequences of this dilemma--but I think you are being harsh on yourself and that neither your friend nor your family would have the same perception. And no, you are not old and this is not your last chance. You are still young, and have had some crappy challenges in your life, and this is just one more thing about your experience here on this planet. And no, you do not have to make a final decision now.

I would think of it as: I have decided to move to Chicago, and now here is a potential complication to that decision. What do I need to do to continue to evaluate my decision over the next several months before taking a final action? And what steps can I take to help my parents regardless of where I end up living?

I have worked with people who have disabilities and chronic illnesses or other conditions that require care for a long time, including in rural areas. Having a caring and involved relative is important--but things that don't involve physically living with the person, things like emotional support, help in managing the finances or logistics of care and medical appointments, just help talking with the different medical providers/staff/agencies/insurance companies/whatnot--all of these things that could be done from Chicago are just important if not more important than being the daily caregiver.

Check in with a local ALS Chapter and talk to some other caregivers and family members. Do some research on what their insurance covers and what it doesn't. Do some research on other local resources for both your dad and your mom. Give both yourself and your parents time to process this diagnosis and what it means. Learn how to talk openly about the various options, and try to have some conversations where you discuss various choices without lending any kind of emotion or judgment to the choice. There is not one right thing here. There are multiple paths you can take, each with some benefits and some drawbacks and the choice you end up making will ultimately be neither right nor wrong but just the path you are on.

Best wishes to you and your family. Rheumatoid Arthritis and ALS are both very tough.
posted by freejinn at 10:13 PM on July 16, 2014 [5 favorites]

I think the most significant point is that whether you go to Chicago or stay with your folks won't make much difference in the long run because they're going to need more care than you can give - it's just that simple. And it's going to cost way more than you can pay whether you stay or go. They're going to have to get enrolled with whatever programs are available in your area to take over their care eventually, and more likely sooner rather than later.

You have some time before your move to Chicago and this is where you can be the most helpful - in organizing and managing a plan to get your parents enrolled in whatever programs or agencies can provide their care when it becomes too much for them to handle alone. If you do this, your contribution to their welfare will be ten times what it would be if you just stayed to help with the daily living obstacles and physical care.

You must continue your plan to go to Chicago. Your "last chance at happiness" isn't even in sight yet, young woman. But your path clearly leads to the Windy City and that's where your next chapter begins. I hope you have a wonderful time.

Be kinder to yourself and for heaven's sake let go of the guilt about what little you did or didn't do at the age of 15 when your precious father was struck down! I was 27 when my father got hit with lung and brain cancer and all I did was bounce off the walls and scream and cry and wander around in a daze, angry and sad and useless - and I didn't even LIKE my father!

I'm sorry that these terrible illnesses have hit your parents; ALS in particular is a horrible thing, and rheumatoid is such a long and painful existence - my dear Aunt was so crippled up by RA that she was like a fragile little bent up waif, never free of pain and swollen joints, surgeries and dreadful medication side effects . But our parents all end up with something sometime and we have to figure out what we can do and what we can't to help them. You're doing a good job and you won't be doing yourself or your family any good by turning away from your own plans when you really cannot fix the situation.
posted by aryma at 10:53 PM on July 16, 2014 [4 favorites]

Echoing Jacqueline.

Have you talked to them about moving to Chicago with you?

My parents are only in their early 60s, but I've started to have those sorts of tough conversations with them. They've let me know about their basic financial situation (which is quite good, thankfully), and they've talked about what they are willing to do.

My dad flat out said "parents need to be willing to move to their children if need be- children already have to care for a family of their own, and can't put their whole lives on hold to take care of their parents too."

My grandparents are in their late 80s and are amazing people who are struggling with all the severe sorts of health issues that can happen at that age. Unfortunately they have stubbornly insisted that they will not leave their old family home, even though it's far too big and far too challenging for wheelchairs or elderly folks who are mobility impaired. They have constantly refused proper professional care (even though they have more than enough money to pay for it), and the burden has fallen on my dad and his siblings. Two of those siblings are up at the house daily doing things nurses and caretakers should be doing, from giving baths, to helping on the bathroom, to cooking and cleaning... taking all kinds of time and attention away from their own kids who need it.

My dad, and aunts and uncles have had to either live nearby or fly in regularly to try to give care in this situation. It has caused a lot of grief and frustration and that's bad for everyone.

Given that your stepdad is suffering from ALS that's something where professional care is needed. But it'd sure be helpful if you were around to monitor things, support your mom, et cetera. So yeah... you'll want to be around instead of just moving to a distant city on your own.

But why couldn't they move with you to a larger city where it's easier to find that sort of professional care, easier to get them placed in an assisted living facility, and easier for you to be around while pursuing your own life too?
posted by Old Man McKay at 11:03 PM on July 16, 2014 [1 favorite]

Dogheart, in 10 years time you are going to be thinking "what if", no matter which choice you make now. Both choices are awful to contemplate. If you feel sad, it's not that you're making the wrong choice, it's that life's giving you a bad deal. Hugs from across the internet, to you and your dad.
posted by superfish at 11:37 PM on July 16, 2014 [6 favorites]

This is rough and I am sorry you are going through this.

Is it possible you could go to Chicago, figure out if the grass really is greener, and then when your dad's disease progresses to the point where they need help, go home if they need it? I don't know how long it will take the disease to progress, but you may be able to commit to both, go to Chicago and do the adventure you planned on with your friend. But as soon as your parents *really* need you, go back to them. I think you may feel some regret if you don't go to Chicago, but you will also feel regret if you aren't there for your parents as their condition gets bad. Sign a one year lease, or maybe if you can sign one for less, do that. Or find a place with a flexible lease policy. (My friend's place in Chicago allowed subletting and it was surprisingly easy.)

You could also consider helping them from afar in the interim. It doesn't sound like they need nurses or in-home care aides at this point, but what if you had meals delivered to them every so often. I'm sure there is a Meals On Wheels type thing you could have catered to them on a regular basis. The only thing you really mentioned was cooking. Is there anything else they need specific help with at the moment?

Also, maybe I missed it, but how far are your parents from Chicago? Can you go see them if they were to ever really need you? Can you commit to visiting a couple times a year outside of Christmas or whatever holiday your family convenes?
posted by AppleTurnover at 11:49 PM on July 16, 2014 [1 favorite]

My mother had ALS. I don't know how aggressive your dad's ALS is, but in my mom's case she was dead within less than two years of her diagnosis, and that was with being on a ventilator (which very, very few people do, often because it is cost prohibitive). Without the ventilator (which was a mistake, in my opinion), she probably would have been gone within a year.

ALS is a horrible, horrible, horrible disease, and it often moves fast. I am going to suggest that you delay your move until after your dad has passed and you have gotten your mother whatever care she will need, or convinced her to move with you. Don't let yourself get stuck being your mother's caregiver for the rest of her life, but give your parents this time during what is going to be a heartwrenchingly awful (I don't even know how to express how bad) experience for them. Tell your dad that you are still going to move, but that for now you want to be there with them. Your friend will understand, and if she doesn't, she's an asshole. If she doesn't understand what ALS is all about it why it would impact your plans, she should read up on it.

If I had moved when my parents were going through this, I would have sorely regretted it for the rest of my life.
posted by amro at 4:43 AM on July 17, 2014 [2 favorites]

Also, while your dad may very well live longer than my mom did, please don't make the mistake my dad made of finding false hope in Stephen Hawking's long survival. His situation is really an anomaly.
posted by amro at 5:04 AM on July 17, 2014 [1 favorite]

First of all with your biological dad, stop beating yourself up, you were 15. 15 year olds are jerks on a good day, and dealing with a serious illness and death of a parent is a MASSIVE stressor on a kid. I don't know what you think you should have done, or shouldn't have done or whatever, but I'm sure that your Dad knew that you loved him in your teenaged way. Forgive yourself for your perceived transgression.

As for this situation. What a nightmare. I'm so sorry you're going to have to deal with this. First things first, talk to your friend and let her know what's going on and that you're working through the situation. I mean, you weren't planning on leaving next week were you?

Start getting social services sorted out now. Your Dad may have disability from work, he may have long term care insurance, there may be a provision for a person to come in and to do for your folks. If so, and you feel that things are adequately sorted out, then move to Chicago and keep close tabs on the fam.

As for your Mom, she may eventually need to downsize to an apartment, not just financially, but for mobility issues, etc. So start thinking about those things now. Maybe she'll want to move with you to Chicago at some point.

She may also need meels on wheels and someone to come in to help with cleaning once a week.

At the end of the day, you can't live their lives for them, they have to make decisions for themselves. You can help them by researching resources and getting in touch with support groups and care providers.

This diagnosis may put your Dad into SSI and Medicare, which may be a blessing for your family.

If possible, stick around for a few months to help them situate themselves to the new-normal, and then honor your parents by going out and living an awesome life!

No right-thinking parent wants their child to sacrifice for them. And certainly not the dream of moving and starting an exciting new life. I will say this though, there are PLENTY of chances for happiness, not just one.
posted by Ruthless Bunny at 5:20 AM on July 17, 2014 [3 favorites]

Go with your Dad to a doctor's appt. Try to get an understanding of his status. If your Mom is well enough to drive, she can prepare food. Take the longer view; this is a long term situation, but health is unpredictable. His diagnosis is so new, you all need time to process the information and make plans. Your step-dad may have disability insurance at work.

There's a national network of agencies that assist the old people; they'll be a good resource.

One thing you can do now is help your family have the house in good shape, with small things repaired, junk donated, maybe even fresh paint in a room or two. You can talk to your Mom about her nutrition, and you can check out Meals on Wheels.

Your concern about your friend is admirable, but if you choose not to move to Chicago because your step-dad is ill, that's just something unexpected, and she'll understand.

Think about 20 years from now, and how you will feel about the choices you make. People are happy and unhappy in all sorts of places. You might hate living in Chicago or love it. This isn't a last chance. Life is full of twists and turns. Many people have parents back home who need care. They drive or fly or whatever, but they stay involved.
posted by theora55 at 5:49 AM on July 17, 2014 [2 favorites]

Sent you an email to the address in your profile.
posted by headnsouth at 8:58 AM on July 17, 2014 [1 favorite]

I haven't read all of the above, so this may have been covered, but I think you need to find out more about his illness.

Apparently the term ALS "is commonly used both for the specific disorder (sometimes referred to there as Lou Gehrig's disease) and as a umbrella term for the group of Motor Neuron Diseases". From some brief googling it seems unclear whether Hawkins has ALS or a different MND, but what seems accepted is that whatever MND he has, the pace of his progression is extremely unusual.

I am not an expert but I've done some reading, and my father has PLS (another Motor Neuron Diseases), and I think there can be a very vast difference in progression rates. My understanding is that they aren't completely predictable in any of the MND's but the time frames are very different, 3-5 year average for ALS vs 15 years for PLS.

I remember the horrible, hollow feeling of devastation, sorrow, pity, fear, when my father was initially diagnosed (actually with ALS at first). The MND's are physically and psychologically brutal diseases. Give yourself some time to process all of this before even trying to decide. The processing can happen while the doctors and your family find out more details about his illness.

[and nthing some of the other advice above:
(when you are ready) talk to your friend, she should understand if you feel the need to be with your family for a few years. And that there's never only one last chance for happiness. Chicago will still be there in 5 years if you decide to postpone. And not to beat yourself up about the past, you were a kid.]

Hugs, and memail me if you need an ear.
posted by pennypiper at 12:37 PM on July 17, 2014 [1 favorite]

Hey, dogheart. I have been thinking about your question all day today, actually since you posted it last night, I guess because we are really similar. I also live with my family in a rural area and help take care (really, very minimal help, it's more like "moral support and comic relief") of my elderly grandmother, who I live with. I'm actually a year older than you, maybe a little less, so I know that feeling of "I'm too young to be stuck here"/"I'm too old to be a bright young thing in a big city." It's a weird feeling- everyone we see in town seems to be married and have kids and not think exactly like us, and everyone on the internet who thinks like us seems to live in a trendy city where they drink a lot of wine and do their hair (I fucking never do my hair, I honest to god never do my hair.).

Sorry, what follows is kind of like what's above, it's a mix of practical advice and emotional advice and just trying to commiserate.

I agree with everyone who says it is too soon to decide FOR DEFINITE whether you are staying or going FOREVER. I would personally, in your shoes, continue socking away as much money as you personally can while planning to move in January with the understanding that you are going to know a lot more in five months. ALS DOES move fast, but sometimes it moves slow. Your dad might not have 10 to 15 years left, but he might have five, and three with good mobility. I think you will learn more over the next few months as you see more doctors and as you see how your dad feels.

Don't judge yourself on what you did when you were a fifteen year old child. I regret not spending more time with my grandparents at exactly that age (I walked home from school past their street and NEVER stopped in, not once, and I think about that a lot), but on the other hand, I was fifteen, which is embryonic, and you can't go back in time, anyway. This isn't a do-over or a cosmic sign. Time is linear, not cyclical. The only things these situations have in common is that they both suck and blow and the only way through them is to make the most best decision you can make at any given time. That means not staying in your town now to make up for something you did or didn't do as a kid. That means securing your own financial and emotional future as best you can. That means being the best daughter you can be.

That means there isn't one right decision to be made. I think you should go, and be prepared to move back if that becomes necessary at some point in the future. You don't know if it will or not. Like, I think you'll know by Christmas what path your dad is on. As hard as that is to think about now, it's good to have that information. If it looks like it might be only a few months, I would (personally) probably stay with the idea that I would go once my mom was settled or could come with me. If it looks more like a few years, I would go with plans that I could come back if needed in a couple years.

They're going to need in-home care, my parents. Sooner, rather than later. They do not have the money for it.

Having watched my family (my parents, my maternal aunts, and now me, to some extent) try to navigate home care and finances for my grandmother, the biggest, biggest, biggest lesson I have learned is that you should not assume that you know or understand whether your parents qualify for something or not. They might qualify for Medicaid, or Meals on Wheels, or SNAP, etc. I didn't realize until I was an adult that in my family, we had treated what were basically rumors and suppositions as if they were gospel fact, particularly around Medicaid. NO ONE had any direct experience with Medicaid or any interactions with a professional who worked with Medicaid, but it seemed that everyone "knew" what Medicaid would and would not cover. (Similarly, they "knew" that social workers couldn't help us (until one did), that physical therapy was useless (until it improved my grandmother's mobility), and that in-home care providers charged twice as much as we could pay (until one charged 1.5 what we wanted to pay and took a bunch of HR shit off our plates)). This is, to this day, my biggest regret and frustration.

It is totally true that a lot of these programs are administered in some arcane way that makes them inaccessible- like, your dad might be eligible for Medicaid, but the in-home care program is administered by St. Peter's Church, and you have to go through the intake process they use, which is at the Community Umbrella Organization, then you come back to our office with your medical form and... Yes, that stuff is REALLY frustrating BUT the nice thing (ha) in this situation is that you can spend the next five months being the person that runs all this down and gets everything in place. You're young, able-bodied and well-educated, and you can make this a part-time job for a few months. You can help them get all the Medicaid stuff together, like ordering their bank statements for the last five years, getting the deed to their house copied, all that. That can start right away- I think you should start with Medicaid and Meals on Wheels, so you know they will both be eating and have nutritious food in the house. Get a lawyer to help your mom apply for SSDI if she doesn't have it already. Keep him on speed dial for when your dad needs to stop working. Etc. My number one rule for you for the next five months is: Make them reject you. Never assume you don't qualify. Apply and make them reject you. Make them reject the lawyer for the SSDI part though.

My number two rule for you is to make precious memories with your parents over the next few months, things you and they can hold in their hearts when you're apart, whether that's geographically or when your dad has passed. My grandmother and I go on drives to look for animals and sit on the porch and watch TV together and go to fireworks shows. Just spend time with them. Whatever you do, just spend time.
posted by Snarl Furillo at 4:29 PM on July 17, 2014 [9 favorites]

OH. So. I didn't get to the part I meant to get to about why I think you should go, unless your dad declines very quickly. I went. I saved money for two years, got an Americorps job as a hippie do-gooder in Cali-fucking-fornia, yee-haw, and I went. It didn't go exactly how I wanted it to go, but I'm glad I did it. In particular, I'm glad I switched up my career and sort-of proved to myself that I can adult on my own.

But anyway, at one point I hated it and I wanted to quit and being back with my family was part of it. I even asked about it here, and someone, very well-meaning, said, "I keep thinking of your elderly grandmother, the "light of your life." For heaven's sake, she's elderly, you love each other, you were happy living with her -- she's not going to be here forever. One of the ways I decide what to do is to imagine future regret. If you stick out the whole year, go back, and she passes the next day (god forbid)... such regret."

That was 18 months ago, my grandmother is still here and shows no signs of stopping. She turned 93 last week. I love her and obviously the clock is winding down, but it turned out I had two years plus for my own stuff. So. There's that.

I also don't think this is your last chance to be happy or have a good future AT ALL, but it is good to go, change your perspective, maybe work on your career or meeting a romantic partner or whatever. My primary thought is that you could have better career development for a couple years in Chicago than at home, and that could be important later. Like, I think it would be better for you to have a couple good resume builder years then one or two years out than three to five years of bored and rural poor at home. If you have to boomerang again, you would have a network waiting for you in Chicago, rather than trying to build that network from scratch when you're older with a weaker resume.

So basically, I think you should go:
-for your financial future
-If your dad's illness seems more medium-term than short-term over the next few years
-If you can get some care set up for your parents before you go
-with the understanding that you might/probably come back and that's okay.
posted by Snarl Furillo at 11:17 PM on July 17, 2014 [1 favorite]

Response by poster: Jesus.

Thank you, all of you, so, so much. This outpouring of support for what feels like such an intensely internal matter just at the moment-- it means so much to me, and I have cried big fat ugly snotty tears of gratitude at the response. I have a feeling that I will be rereading this in the months to come, for strength and reassurance. Best of the Web, right here, for real.

More concrete things-- I do have an older half-sister in the area, but she's so self-centered and absent-minded that, uh, obviously, I didn't even take her into consideration during my initial freak out. (Whether this says more about me than her, I don't know.) But at least my parents won't be totally alone. From what y'all have been telling me, full-time in-home care isn't something I'd be able to take on myself, anyway. Still, she's at the least nearby, and can be counted on to do the minimum possible non-douchey thing.

Still, I can breathe a little easier now, and considering I posted in full-on panic mode, that's saying something. The disease seems to be confined to his lower extremities for now, which I understand means a slightly longer timeline to work with. It's still gonna suck, I have no illusions about that, but more time to process and plan before the shithammer really comes down is no bad thing.

My BFF? I linked her to this thread, because we're terrible at expressing our feelings face-to-face, and, verbatim, she said "Dude, we will figure shit out. Don't worry about me in this. With you til the end of the line." (This woman, you guys, I swear to God, I am so lucky.)

So. I'm going to lunch with my dad tomorrow, and I'm going to try to talk a little about this. The consensus seems to be-- and I agree with it-- that I should do what I can while I'm still here, and then go. (Be prepared to come back, but go.) Knowing my dad, I expect I will have to fight a little with him to get him to let me do anything. I think the whole family is still in shock, and it's still early days, but this thread has certainly helped me to find a bit of direction in a crazy and fucked-up time. I cannot thank you enough. Words are seriously inadequate.

I suspect I will let y'all know how lunch goes. Thank you, again, from the bottom of my heart.
posted by dogheart at 9:22 PM on July 18, 2014 [5 favorites]

Came back with a late thought: I don't know your parents' ages but it maybe worth your time to check into veterans' benefits as well. Your step-dad or your bio dad or your mom, did they participate in a war in ANY way? Sometimes even people who served "at home" - for example, working a military contract at a plant - are eligible. Or, if your bio dad served, your mom may be eligible as his widow. Just another thing to look into. FIY, often even the social workers don't know about these benefits so try calling more than one place to ask about this.
posted by rada at 8:23 AM on July 21, 2014 [1 favorite]

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