How much should I reasonably weather and sacrifice for my dying mother?
January 17, 2016 2:44 PM   Subscribe

How much disruption of my life is OK when it comes to caring for a dying parent? What if I just don't have it in me?

My mom is dying of liver failure caused partially by hemochromatosis and partially by her choice not to make any lifestyle changes or follow doctor recommendations after her diagnosis, which makes my feelings more complicated.

My parents live in rural Florida and I do not drive. I'm currently flying from my home in CA to see them because my dad is asking for help handling everything and my mom is asking to see me. My sister lives closer to them but she works a 9 to 5 and to be honest is not the most level headed. I think the hope is that because my work can be done remotely, I can be there for the long haul to help my dad take care of my mom.

The problem is that I am a CEO of a startup that is starting to be successful but is in a precarious and problematic place right now. I must work at least 30 or 40 hours a week freelancing on top of handling the business to keep money coming in or my life and finances, not to mention my company, will completely fall apart. This is already a huge problem I've been trying to get the energy to solve creatively, and now I feel like going into this care giving situation is going to make it impossible to keep everything running.

I love my parents, but staying with them in FL is torture even when no one is dying. Because of my inability to drive, it's very hard to get alone time or get healthy food to eat, and the house is tiny.

I want to be there for them and to see my mom but I don't know if I can do this. Is it crazy to think I will be able to do my work in the house while this is happening? Should I accept the hit to my company and finances because being with family at this time is obviously more important? I'm so worried about my future and how I will climb out of a financial and professional hole while grieving.

To make matters worse this comes on the tail end of a year of epic loss, a dear friend died and beloved pet died as well, among many other losses and tragedies. I am running on fumes.
posted by tellyalater to Human Relations (18 answers total) 6 users marked this as a favorite
 
You are not going to be able to juggle a 40-hour freelance job, a needy startup and a terminally ill parent, no.

You will be able to go for a week, make a lot of freezer meals, do a ton of laundry, photocopy all of the insurance paperwork you might need to help from CA, and call on hospice. Your family needs ongoing services at home.

I'm sorry you're in this position.
posted by DarlingBri at 2:49 PM on January 17, 2016 [55 favorites]


Once when embarking on a creative business thing that I really cared about, my narcissistic good friend nominated me to be in her wedding party and do all sorts of other shit towards her goals. She lived 2 states away, so this all involved a lot of travel.

You should visit for a finite period of time, help with some organizing including therapy or social worker type resources to help your father cope and function - and then cut it off. Don't sacrifice your financial wellbeing and important endeavors. Do not. Do not.

I can't tell you how much I regret my decision to suck it up and help out. I did not put myself first. There are people who have jobs that entail doing all of the things your dad unreasonably wants you to do, even though he is an adult. Some of these things are free or low cost and come from insurance coverage or community programs for the sick and elderly. There are scams, too, and you want to make sure he doesn't get fleeced. But seriously, there is a lot that he can outsource and handle on his own.

I'm not a mean person. I'm telling you that this sounds like you will fail if you put yourself on the chopping block like this. Your sibling's 9 to 5 job is NOT more important than your own financial security.

My two cents. I'm sorry about your mom's condition. I care about yours, too, though. FWIW.
posted by jbenben at 2:57 PM on January 17, 2016 [6 favorites]


Definitely call on hospice, if it is available in the area. Do not think it is "too early" - most people wait too long to utilize their services.
posted by ThePinkSuperhero at 3:02 PM on January 17, 2016 [7 favorites]


Response by poster: They do have hospice now, thankfully.
posted by tellyalater at 3:06 PM on January 17, 2016 [4 favorites]


Hospice will be a HUGE help. I am so thankful for hospice coming in when my mom was dying - it made all the difference. With my mom's hospice (Kaiser, in northern CA) they had counseling for the family members as well, which was great.

The hospice social worker ought to be able to guide you to sources of help such as home health services, hospice volunteers, clergy, and so on.

Definitely fly out for a visit, to help your parents get organized, coordinate services, and anything else they might need, but you don't have to tank your business or give up your own life. I'm sure your parents wouldn't want you jobless because of them. Keep your visit down to a week or so, however long you can take off, and then keep in touch via Skype or text or phone.
posted by Rosie M. Banks at 3:09 PM on January 17, 2016 [1 favorite]


They do have hospice now, thankfully.

Good. Were I you I would plan to go and get a good idea of the situation on the ground. Then I would talk to their hospice case supervisor or social worker about what additional services can be brought on board, even if they're 3rd party services to which they refer you. If your folks are Roatarians or church members or have any other kind of civic connection like that, you can reach out there too. Meal delivery, pharmacy pickups, laundry, house cleaning, all of that makes a difference.
posted by DarlingBri at 3:11 PM on January 17, 2016 [1 favorite]


You need to accept your limitations. You can't do everything, even if you didn't have your job, it's okay to not have the emotional bandwidth to be the best caretaker in the world. Taking care of a dying parent is hard. No one should fault you for needing help and support from professionals who can help make her more comfortable.
posted by discopolo at 3:23 PM on January 17, 2016 [2 favorites]


I really, really don't think this is something AskMe can help you with. I lost a parent to liver and kidney failure last fall, and I had an visceral need to be there. I couldn't be there as much as I wished, for various immediate-family-care reasons, but I was miserable and no good to anyone, and returned as frequently and often as I could.

Note: that does not mean you have to feel the same way, at all. It just means that I think you will know, deep in your gut, whether and when you should be there. Listen to your gut, not AskMe. If you are asking AskMe this question, I think what you're really asking is "what will society think of me if I take these various options," and I think, in this case, fuck society. Do what feels right to you, make sure your family has the care they need one way or another, and be with them in whatever mode of communication you can manage.

Hospice during kidney or liver failure is grueling and intensely sad, and I was honestly scared to leave because I wasn't sure I'd have what it took to go back. But listen to your gut. It's pretty much impossible for it to steer you wrong.
posted by instamatic at 3:41 PM on January 17, 2016 [13 favorites]


You've got to do what's right for you. But one thing you may want to add in your factoring is your dad. Do you want to be there for him?
posted by yes I said yes I will Yes at 4:00 PM on January 17, 2016 [2 favorites]


Response by poster: Being there for my dad is the biggest reason I want to be there.
posted by tellyalater at 4:05 PM on January 17, 2016


The question I have is, to what extent will they and you be able to respect that you have to work 60-70 hour weeks -- if that meant that your other waking hours could be there with them? I think it will be VERY difficult not to feel like you're on call to them 24/7. Probably impossible. But I wonder if you could set up a schedule.

The other piece, apart from time, is your executive energy -- the part of your brain that can plan and be creative and solve problems. I don't know how people with jobs and families do it, because I notice my ability to kick ass at work gets diluted even if I'm only planning a big trip. For me, I can generally only handle one major focus, maybe 1.5, but it sounds like you already have 1.5. I don't think you'll be able to split your attention long-term and that focused bursts like DarlingBri suggested would be best all around.
posted by salvia at 5:32 PM on January 17, 2016


Been thru this with both parents - they were divorced. Show up for a visit and then go home. Your dad's job is to see your mother through this much more than you. He is abrogating his responsibilities in this situation - you do not have to accept the responsibilities he's trying to pass off.
posted by ptm at 6:39 PM on January 17, 2016 [2 favorites]


I kind of agree with instamatic. There are no right answers and there are no good answers, there's only least bad answers - choosing what you can live with, and what you can live without.

You sound pretty angry at your mom. I can't really tell whether that's a combination of self-protectiveness (against the pain of losing her) and resentment (for not taking care of herself better), or the result of a long term difficult relationship. Even if it's the latter, people sometimes have a lot of complicated feelings that they did not expect after losing a parent that they had a bad relationship with.

Only you know your father, and how much he would benefit from your presence now, versus later, how much he will let on, how much he will let himself be helped, etc.

It sounds like you have had a hellish year, and might not be in the best place emotionally to be making these decisions. But this is when they have to be made because life is like that.

Could you find a therapist with some specialization in dying and bereavement? I think it might be really helpful for you to sit with them and talk things through. Not a conventional long term therapeutic relationship - depending on what they offer it could be two long sessions over three days, or something like that.

I don't believe there's anything inherent you owe your parents just because they're your parents (maybe I'm too Westernized for that). But for myself, to live in congruence with my own values in the context of specific relationships, I felt/feel a very strong sense of duty for some things. It's not that I would fail them if I didn't do it (and they would never feel that way). It's that I would compromise myself. The truth is that trying to carry out the duty as I feel it also requires compromising myself, and it's a constant impossible balancing act.

What's happening with your parents is a Big Deal and a twice in a lifetime kind of thing. It's worth going to extraordinary measures, like hiring a therapist for a few hours, to help you think through this. I am worried that, tired and stretched and stressed as you are, it would be easy to let your short term needs/fears predominate over your long term needs in an unhealthy way - or vice versa. Or just to overlook possibilities. I also think, just based on human nature, no matter what you decide and no matter how good/least bad that decision was, it will be hard not to second guess yourself down the road. So I think that's also why it's worth creating for yourself a little bit of breathing room right now to think/feel things through.

Whether you decide to go (longer term) or not, the therapist could help you think through what you can reasonably offer and how best to respond to your family's needs and your own. One thing someone told me once is that who someone is and how they are living is the same as who are dying, if not worse (exacerbated by pain, fear, etc). So if you generally find your mom difficult and avoidant and your dad passive and avoidant, for example, that is what you should be (as) emotionally prepared (as possible) for.

(If you did decide to go longer term, I wonder whether it's possible to rent your own place near your parents, walkable or bikeable so you can come and go under your own steam. That way you'll be able to be there with them but also to go home and shut the door when you need to. Ask your parents for help with the money if they have it and you don't, and use it to take care of yourself so you can take care of them and of your own future. Including for cab rides to the grocery store or a plane ticket for a friend to come down and visit with you or just whatever you need to take care of you).
posted by Salamandrous at 6:59 PM on January 17, 2016 [7 favorites]


Ok, so I am very very much not a doctor, and you should check with your mom's doctor, but it's my understanding from my dad's doctor that by the time someone with liver failure is in hospice, it is likely not that long of a time. Part of what was hard for me was not knowing if it was a matter of a few days or a few weeks, but it ended up being about a week. (In fact, he passed away a few hours after I was called home somewhat unexpectedly, which was really tough.) But if it helps, the doctor also made it really clear that usually when someone is in liver failure, their kidneys shut down, and that meant that they typically pass away fairly quickly with very little pain. My dad was not really recognizing people or able to talk much after a few days, and at that point, I was very much there for my mom. The rest of our family was far enough away that they couldn't arrive in time, and I felt very strongly, absolutely viscerally, that she should not go through that by herself (though they had a very good local support system).

So definitely check with your mom's health care providers, because it's one thing to make these calculations if you're thinking about months, and another thing entirely if you're thinking about days to a couple of weeks.
posted by instamatic at 7:50 PM on January 17, 2016 [7 favorites]


Agree that there are no good answers. I can tell you some things that may help you sort this out, or not. Please know that I'm sharing these** as stuff nobody told me about terminal illness and hospice, not as, "You should..."

I've been through this with two in-laws who I loved like parents, both in hospice care at the end. I was living on the other coast and flew out every few weeks. In hindsight, I should have just planned on staying. Ultimately, there was nothing that I was doing at home that was that so important I needed to leave people who needed me at their bedside or for support. I have few regrets in life but I regret not staying. I left because I knew I had obligations at home but people are kind and would have understood and ultimately, it's not like I was a millisecond away from curing AIDS. It wouldn't have been catastrophic for me to stay and be there when they died. So there's that.

Terminal illness and a person's life ending is something you're never truly prepared for. At the end of her days, my mother in law, a force of nature throughout her life, was confused and frightened. I had no idea that might happen. I sat with her and held her hand and told her stories for days and I like to think I eased her passing, but I wasn't there when she died and that is something I don't feel good about.**

Lastly, I have adult kids and we have good relationships. If I were your mom and I knew my kid was factoring in lack of healthy food and alone time while I was dying, I just...I don't know. I wouldn't feel good about it. I think my heart might break a little.

**Again, none of this is finger-wagging. It's just that nobody TOLD ME any of this and I wish someone had. While you need to do what's right for you, there's stuff you may not be considering right now. I don't mean this in a callous way, but that you're lamenting a lack of healthy food means that your perspective on this needs to be shifted a bit, hence my pushing a bit.

I am NOT saying this is true for you, but I wish someone had sat me down at the time and told me to stay with my dying parents. I truly do, and everything I've written is meant to be informational and for you to consider shifting your perspective a bit, for your dad AND your mom. Death is really fucking final. You won't get a do-over or a chance to apologize for leaving.
posted by yes I said yes I will Yes at 4:08 AM on January 18, 2016 [7 favorites]


I second the advice above to find out from your mother's doctor what her prognosis is before you make a decision. The situation might feel very different if she's got a few weeks left, versus a year or more. Obviously the doc can't predict the future, but you can find out more about the most likely course of events, and factor that into how often you visit and how long for.
posted by une_heure_pleine at 4:15 AM on January 18, 2016 [2 favorites]


I am sorry you are going through this, and I agree that no one can tell you the right thing to do. I can also say that anticipating the death of a parent is not the same as actually experiencing it - there is no way to understand what that is going to be like for you until it happens. The permanence of that loss is really overwhelming. Once your mom is gone, you have no chance to go back and do anything differently, so please think very carefully about what you will be living with for the rest of your life. Also you seem to be blaming her somewhat for her impending death, since you note her refusal to make lifestyle changes. The fatigue and other symptoms of her disease might make such changes seem really overwhelming to her, and the lifestyle choices might seem like a big loss for minimal results. I am not familiar with her disease, but from what I've read, it seems she might have been suffering with a lot of pain for a very long time. It is hard to live with chronic illness, and lifestyle changes might seem simple to you but too much to her. I would caution you to try not to judge her for that (and I don't know for sure that you are - I just sense that this is a possibility).

It is easy for people here to tell you that you don't have much obligation to her and that you need to take care of yourself and your business and let this go, but none of us will have to live with your choices. You alone will have that burden. I understand that you are going through other losses. Your life right now sounds really hard. But once your mom is gone, you will be able to take care of yourself. You will not be able to get back your last chance to help her and your father through this.

Good luck with this - I am not trying to make you feel guilty. I've just been on the other end of this, and I know what it's like to live with regret. Definitely lean on whatever services are available to you and her. I wish you the best.
posted by FencingGal at 9:00 AM on January 18, 2016 [4 favorites]


You also need to keep in mind that it doesn't have to be all or nothing. You sound like the kind of person who commits and then gives 100%, and I think you are looking at this the same way. You don't have to commit to 100%.

Look at your schedule for the next three months. Figure out how much time can be allotted to supporting your dad. You could go for three days once a month, maybe. Or more. Or less. You and your dad could talk about how to maximize that time. He could get away for 48 hours to rest. You could do ALL the household chores, or the caregiver chores. Whatever works best for your dad.

The conversation in your head needs to go like this: They need total 24-7 support. I can't do that. What can I do? I can do X only. Let's figure out how to get the most out of X.

Do what you can. But don't do more than you can, because that's a recipe for disaster.
posted by raisingsand at 10:23 AM on January 18, 2016 [1 favorite]


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