in limbo
February 16, 2016 2:13 AM   Subscribe

My life's turned upside down within the space of a couple of months. My dad has cancer, I've left my job, home, and city to move home to be there for him. Everything is so weird right now, I feel like I am in total personal limbo and completely ALONE. Has anyone who's been in this situation before got any advice to share with me?

Sorry in advance for the epic length of this question.

Basically my dad got diagnosed with stage 3 small cell lung cancer in early January when I was visiting home for Christmas. As he lives alone, I had no hesitation about quitting my job and moving home personally. I feel that this was the right decision.

2 months in, I am adjusting to life in a city I have not lived in since I was a kid, in a country which is very different from the one I used to live in. I do have emotional support from family members and luckily, my dad has a live-in carer so there's someone around who can help take him to the bathroom, prepare his meals and so on. My responsibility is basically to interface with the doctors, understand the medical options, explain them to my dad so he can understand, help him make decisions, and keep an eye on him. I also keep him company and support him emotionally. I know he appreciates this very much especially now that he can't go out, and he doesn't have the attention span for books or TV, so left to himself he just sits at home and broods over his illness. I usually spend about 4-5 hours with him everyday. I am definitely lucky to have the opportunity. I know he likes that I'm around.

I am getting over the initial shock/grief but I am definitely grieving even though my dad's still alive. That is very tough. I don't really know what to say about it. But although it is a huge part of my life, it's not the focus of this question.

My main problem is loneliness really. My entire social life is conducted via phone, with my best friends who live overseas.

I am doing freelance work from home. I don't feel able to commit to a 9-5 job with my dad's changeable health condition.

I have very few friends who still live here. Some people have been great about offering to hang out, but I end up always having to cancel on them because of dad-related stuff, so I haven't really seen anyone I am not directly related to or unrelated to my dad's treatment in many many weeks.

I also feel very romantically lonely, if that makes sense. While I've been handling all this dad related stuff I seem to keep thinking, if only I had a boyfriend who would make some of these calls for me, drive me to X place, make Y appointment, etc. I've never hated being single as such but right now, I really, really feel the lack of someone who would support me in a specific, practical yet affectionate way. I know the possibility of me meeting anyone this year, in this city, and with my situation the way it is, is VERY LOW. (It's a small city, internet dating isn't really a thing, everyone knows everyone, and most people get married in their 20s.)

I just feel like I've been removed from everything I've known for years and I'm here in this city which I haven't lived in since I was a kid and I know barely anyone and I don't even speak the language that well, and I don't know how I'm going to find my way out of that bubble. I'm a very social person and in my old life, I used to go out and meet people all the time, so it's so weird to go from that to this.

My best friend says I should just write off this year as a bad year and give up on being personally happy at all and just focus on being there for my dad. I find this notion very depressing. I AM here for my dad but I don't think I want to give up all hope of personal happiness.

Has anyone who's been in this or a similar situation any advice to share with me?
posted by sockandawe to Human Relations (14 answers total) 7 users marked this as a favorite
 
I want you to really make going out with friends a PRIORITY.

Some people have been great about offering to hang out, but I end up always having to cancel on them because of dad-related stuff..

The next time you schedule something, make sure your family and the caretaker know about it in advance and make sure that THEY are there to pick up any slack/handle anything that comes up, and allow you to go out and just be yourself for a few hours.

You must have balance in your life, especially when it comes to this situation, and you are going to have to fight for it, so to speak. Make sure you're getting out of the house, make sure that you're reading good books, watching funny movies, hanging out with friends and laughing a great deal.

You need to recharge your batteries this way so that you can be there for your father. Draining your batteries down to zero does no one any good. Not you, not your father, not your family.

Practice extreme self care. You deserve it.
I wish you the best.
posted by Major Matt Mason Dixon at 3:06 AM on February 16, 2016 [15 favorites]


I hear you. There are many people who have been in this place. I'm going through one of the worst times in my life right now for reasons I won't get into, but I keep going back to something someone once told me: when you're really down, there are two really important things to do. The second most important thing you can do is just show up. If it's fun, if it's a chore you have to do, whatever's in your day, just show up. The most important thing you can do is show up again.

That said, maybe one bit of practical advice is to put an ad out for a personal assistant (or offer it to one of your friends). It wouldn't give you the affection part, but perhaps it would help to pay someone for a couple hours a day to make phone calls for you, drive you somewhere, etc.
posted by transient at 3:41 AM on February 16, 2016 [1 favorite]


While I've been handling all this dad related stuff I seem to keep thinking, if only I had a boyfriend who would make some of these calls for me, drive me to X place, make Y appointment, etc. I've never hated being single as such but right now, I really, really feel the lack of someone who would support me in a specific, practical yet affectionate way.

I suspect that what you want is support and someone to care for you while you're caring for your dad. The isolation of carers is almost universal. The loneliness is natural, and shared.

While you're focusing this desire on a mythical partner who might provide the help and support you wish for, there are plenty of people in long-term partnered relationships who feel the exact same way. Even if you had a boyfriend, it's entirely possible he'd do none of what you are wishing for.

My husband is amazing in many ways, but I fervently hope he dies before I do because he would be capable of doing absolutely none of that. When my father was in care and then died, he was awesome at the funeral part, but he did none of the care management, paperwork, nursing liaison, or arrangements for the funeral. He also did none of this for his mother; his aunt and his sister did.

If you read the unpaid emotional labour thread, I think you'll find that this kind of care often falls to one person, regardless of if that person has a partner or siblings; and that that person is often a woman. Regardless of gender, though, many people share your experience.

This is all a very long way of saying you should seek out the support of other carers if possible. Where I live, there are national associations who can direct people to local groups, but if that's not a resource where you are, there are groups on Facebook and forums online where you can find people who will understand.
posted by DarlingBri at 4:16 AM on February 16, 2016 [9 favorites]


My best friend says I should just write off this year as a bad year and give up on being personally happy at all and just focus on being there for my dad.

Your best friend is right. While you're looking for a boyfriend for emotional support, what would you have to give the boyfriend, if you found one? Learn to derive happiness from the comfort you're giving your father.

Also, it doesn't look like you are planning to spend the rest of your life there after your father is gone, right? You don't seem to recognize it as home even if that's where you grew up. Yet, you can still try to enjoy the time you have to spend there. If I were you, I'd try to engage in moderate socializing (whatever it is they do where you are) and find an activity that takes you out of the house for at least a couple of hours every day and enables you to see people unrelated to the medical world.
posted by Kwadeng at 4:51 AM on February 16, 2016


Hospitals often sponsor support groups for family members. Call his and ask for the social worker.
posted by Carol Anne at 6:03 AM on February 16, 2016 [3 favorites]


I just finished reading a memoir about a young man who gives up his job and moves from California back to his parents' home in Utah to help care for his dad, who has ALS. It's not great literature, but you may find a lot to relate to.
posted by janey47 at 9:22 AM on February 16, 2016


Try reframing your perceptions. Maybe think of it like a semester abroad. Collect all these experiences, even the bad ones, they are an integral part of your semester.
Brush up on your language skills. Learn to be the best health advocate ever (I promise this will be useful later in life). Make friends with the healthcare folks and put romance on hold.
I totally understand your yearning to have a supportive, cuddlebug of a partner to help you, but you could just as easily be dealing with a romantic partner who is useless in this sort of situation and just makes everything more difficult.
When my Dad had a massive heart attack some 30 years ago I too quit my job and moved in with him. Looking back, I wish I had been more present and deliberately aware during those months. This time with your father is a gift, like a college fund, that you can't and won't recognize the full value of now, but that will come back to you over and over again throughout your life.
posted by BoscosMom at 9:46 AM on February 16, 2016 [2 favorites]


It's easy in a situation like this to sort of romanticize romance and see that as the solution to your problems. I will tell you that when my father died, my husband made everything worse by not being supportive, telling me he just couldn't deal with my emotions. I would have been much better off with no romantic partner because I had to go through the grief of realizing I had married someone who was not emotionally capable of being there for me (we are now divorced - and going through my mother's death without a partner was better).

The people who are offering to hang out are offering you a great gift - at the very least, time to recharge. They are the people who are actually showing up for you - and spending time with them might lead to even more support. I would say move heaven and earth to get together with them. A lot of people don't know what to do and worry about intruding. If you cancel on them, they might think you'd prefer to be alone. If you spend time with them, you are building those relationships. That is your best opportunity right now to get the human contact that you need. And you may grow closer to those people over time, which will help.

I don't know what country you are in, but hospitals in the US tend to have caregiver support groups. That could be very helpful because you'd meet people who are going through what you're going through.

And when this is all over, you will grieve, but you will also know you did the best you could for your dad. That is worth a great deal.
posted by FencingGal at 9:53 AM on February 16, 2016


Some people have been great about offering to hang out, but I end up always having to cancel on them because of dad-related stuff.

People might be thinking they need to hang out with you in a "fancier" sort of way, like planning an outing or going to a museum.

If you just want to hang out with people, and whatever you are doing is fine, make sure to let them know! Even if your friends and acquaintances there are pressed for time, you might be able to get some time in with them if you can hang out during their chores or errands. If your friends there have kids, be aware that it can be really hard for them to arrange going places and you might have a much easier time scheduling with them if you can go to their home.

I don't know if there would be caregiver support groups in that culture, but you can find caregiver support groups online.

If there are public places like libraries or cafes that you can go to when you are doing your freelance work, it can be helpful just to be around other people even if they are speaking a language you don't know. Depending on what the culture is like there, it could be hard to find a place where women can do that easily, but if that is the case ask other women about where you could go.

I also feel very romantically lonely


It might help to realize that these thoughts about how helpful a boyfriend would be are a fantasy, and to realize that fantasy is a natural and pleasant escape when circumstances are stressful. If you had an actual boyfriend there would be no guarantee he would be able to do these things for you, you might be coping with all this while learning fun things about how well he handled stressful situations when in another culture, or he could have been unable to go with you on your trip and you'd be dealing with a sudden and precarious shift to a long distance relationship.

Your fantasies of someone supporting you in practical ways aren't necessarily things an actual existing boyfriend would be able or willing to do -- but you can still get some of this support that you want with practical things. Look into hiring someone to do the stuff you find especially difficult, or take a taxi once in a while if the driving culture there is a lot to handle. Things like needing to make a phone call in the local language might be something some of your friends would be happy to help you with -- don't be afraid to reach out to them, sometimes people are happy to have a way to help.
posted by yohko at 9:54 AM on February 16, 2016 [1 favorite]


A book recommendation: The Selfish Pig's Guide to Caring. I'm not a carer myself, but this book has good reviews from lots of people who are. And the reason for that is that this stuff you're going through? It's what a helluva lot of people who become carers go through.

To quote from an article by the author:
"We didn’t apply for the job of care-giver. Most of us don’t have a vocation for it. We’ve had no training. We’re certain we aren’t much good at it. Plus, and this is the nub of the matter, we’ve got our own life to lead. Are we expected to throw that away because of somebody else’s disability? We’ve got things to do, places to go. And now it looks as if we might not be able to. "
posted by Vortisaur at 10:38 AM on February 16, 2016 [1 favorite]


Get a quality therapeutic massage from someone with experience and you will feel more cared for.
posted by serena15221 at 6:34 PM on February 16, 2016


Seek out a caregiver support group. My boyfriend has been a full-time caretaker in a similar situation, and he found a group that is specific to his parent's diagnosis and is for sons/daughters. He didn't think he'd get much out of going (introvert who doesn't like to talk about himself), but being able to share with people going through the same things he is has been invaluable.

If your city doesn't have a caregiver support group, you might try looking at meet-ups for a low-key hobby. And make sure to take some time every day on self-care.
posted by A hidden well at 6:56 PM on February 16, 2016


Within the span of about 16 months from 2014-2015 I defended my dissertation, got married, moved to Canada for a postdoc, quit my postdoc/any hopes for an academic career and moved home to care for my mother, and then watched my mother die. I was lucky enough to have a supportive partner and I still felt utterly alone. And angry. I was angry all the time. At everyone. It would not have been a great moment to read the Emotional Labor thread because no one else in my family was going to step up, and I needed to focus on handling the situation as it was rather than bemoan the people who should have been helping but weren't. I still could have done a lot of things more gracefully. But I wouldn't wish that stress, fatigue, and isolation of that time on my worst enemy. I'm so sorry you're going through this.

The best practical advice I have is to take people at their word when they say "let me know if there is anything I can do." Make a list of things that you can realistically offload like shopping or picking up dinner for you and your dad. Propose those things to people who make these vague offers. The best thing anyone ever did for me was when a friend of my mom's offered to stay with her every Wednesday so I could go out to play trivia with friends. When I was away from my mother, I was always panicked that an emergency would arise that I should have been there for, so I constantly felt like I couldn't go anywhere. (Trivia was extra bad because cell phones are mandatorily put away.) Knowing that my mom's friend was there and could take her to the hospital if it was required let my brain relax enough to enjoy time away. (Although I was frequently bad company because, as I mentioned, I was almost always angry that this was happening to my mom and to me and no one else was dealing with it.)

I wish there had been a caregiver support group for me to go to in my area. (I checked, and the only one I could find had disbanded.) I hope something like that exists near you and you can check it out. Being social with people who didn't seem to understand what I was going through was hard, too. Good luck to you. And ask your dad lots of questions. Record his voice. And please take time for yourself.
posted by joan cusack the second at 10:47 PM on February 16, 2016


I did this when my mom had cancer, which eventually killed her. I quit my awesome job and my little kids and I moved in with her, for about a year. But I didn't see it through to the end, one of the greatest regrets of my life. I handed her off to my sister, who drove my mom crazy, and my mom quickly decided to move in instead with her sister, who lived 2,000 miles away. My aunt, currently roasting in the fires of Hell, banned me from my dying mom's hospital room when I came for the end, because she thought I was a terrible daughter. I was, I am.

Here's what I think I did right, when I was living with my mom:
  • Cleaned late at night. That way, the fairies were presumed to have done it, and she didn't have to feel like she should be helping.
  • Took her out places. She couldn't walk far, but she liked to see stuff. You know "if you had one day to live..."? Well, these are those days. We brought a change of clothes in case she threw up or wet her pants, and I would get a wheelchair. She wouldn't ride in it, she refused, but I would have it when she wanted to sit down for a minute. Most public places have wheelchairs you can use.
  • Made her food she liked, nutrition be damned. She didn't like to eat anything, because she knew she'd suffer for it later, so at least if it was something she liked she could enjoy it then.
  • Joined a caregiver support group. You must do this.
  • Went to all doctor's visits, and was in the room no matter what was happening. She hated doctors, and preferred to get them out of her hair ASAP, so she wouldn't understand or remember what they said, and I could ask, and write it down.
  • Made a hospital go bag, with a book to read to her, snacks, water, a phrasebook of the local nurses' native language (to win their hearts), a change of clothes for her and for me, etc.
  • Treated the hospital like a fun outing. For my kids' benefit, and for hers. We had picnics, we colored and then hunted for Easter eggs in her room, we tried to scheme our way in to see the babies, we learned Chinese (the nurses' native language), we made art. Considering how much time she was to spend in the hospital, a week in, three weeks out, or so, she needed to enjoy it.
  • Helped her to well, not "make amends", but make peace with the people she had always been beefing with. She let go of her grievance against my dad so far as to buy him a new mast for his sailboat, the sailboat he and that woman would be enjoying together when she was dead. That's some forgiveness right there.
Here's what I should have done differently:
  • Gone more regularly to the dang support group! I could have talked out my feelings of overwhelmedness, maybe, and they could have helped me.
  • Gotten respite care once in a while, so it could be just me and my kids, in my own house, or seen friends, whatever. This might have saved me. This right here.
  • Let the people I loved, who loved her too, know how to help her and me. "Oh thank you, I'm fine!" I said, until I wasn't. They could have cooked sometimes, or given her rides places. It would have been better for her to see more people, too.
  • Not let childhood stuff get in the way of this new dynamic. I don't know how I could have avoided that, actually, but I bet a therapist or the support group could have told me.
  • Just fucking toughed it out. Obviously. Like your friend said.
I hope my experience is helpful to you. Maybe you think you would never abandon your dad now when he needs you, only a terrible person could do that. But even the best-intentioned person can break, and your reaching out here is a great first step towards taking care of yourself, too. You have to do that, to be any good to him.
posted by pH Indicating Socks at 11:36 PM on February 16, 2016 [1 favorite]


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