Cancer or chronic illness when alone
December 19, 2018 5:08 PM   Subscribe

Have you or anyone you know ever had to deal with a serious illness like cancer while alone (no partners, housemates, or family to care for you)? How did you manage?

I'm not currently in this situation, though I may be - it's kind of a recurring nightmare. A lot of people in my family (including my dad and his mother) have dealt with cancer, to the point that I feel like it's a matter of 'when' not 'if' for me. Usually they've dealt with it in their later years, and most of them survived and thrived for decades - even those that eventually died from it had lived long lives. At the same time, I also have recently lost friends (and have friends that lost friends or family members) from cancer, often close to my own age (I'm in my 30s) so that spectre is becoming ever present.

Between that and my own weird health issues, I've been thinking a lot about what would happen if I had a sudden cancer diagnosis right about now. I'm single and live alone, in a completely different country to most of my family. My parents are getting on with age and while they'll probably be willing to fly over to take care of me, having done so before, their abilities are limited and also emotionally it would be a huge toll on me for various long-standing issues. My sister, who I get along with much better and who is very good at being organised, is halfway across the world with her own family and I don't know how able and willing she'd be willing to uproot for me. I have close friends, including those that have taken care of me during bad times, and I am part of communities where community care is A Thing, but I don't know how well that system works with a more serious condition like cancer. I live in a country with a decent healthcare system (Australia) and so much of my networks and connections are here, including medical and mental health care, but if things get dire my family might elect to fly me back to their home country, where I will get medical care (though much more expensive) and not worry about rent or bills, but will be isolated from everything else I care about. (I was back there for nine months before moving here and the stagnation drove me insane.)

I remember all the logistical things that needed to happen after my father's diagnosis (I was 13), all the work that had to put in to get the house working. Not just obvious stuff like being there for him during chemo, but also things like having separate plates so he's not accidentally catching someone's germs while immuno-suppressed, or figuring out who I could stay with for a few nights while my parents were in hospital. I don't know how I'd manage that alone! I can be pretty resilient and have survived some emergencies, but there's been days where the house is a mess for too long and I barely eat due to some other health or emotional issue bringing out my energy - how will I cope with it while recovering from chemo?

I get that this is anxiety-driven and Talk To A Therapist territory (I've been seeing a therapist regularly) but I also feel better when I plan for worst-case-scenarios or at least know that such a plan is possible. Also this doesn't have to be solely about cancer, that's just the most prominent condition in my mind, but any sort of chronic or terminal illness works too.
posted by divabat to Health & Fitness (16 answers total) 30 users marked this as a favorite
There are a few AskMe posts that speak to the logistics of food and cooking:

Experiences with grocery delivery

Easy delicious meals for depressed, fatigued spinster

Boggled by the dinner question, edition 5,735

Practical dinner ideas for one fatigued person?

It may be helpful to become familiar with the spoons analogy for managing things like fatigue and chronic illness. There may also be social workers or hospital care managers that can help with logistics, as well as organizations or agencies that can assist with things like transportation.
posted by Little Dawn at 5:51 PM on December 19, 2018 [2 favorites]

I imagine there might be support groups for people in a similar situation. If not, you could start one.
posted by schadenfrau at 6:15 PM on December 19, 2018

Social workers or similar are a tricky thing for me to access - my immigration status places restrictions on when I can access such services (I get Medicare but that's it), and the Government keeps changing the rules on when someone like me becomes fully eligible, so I'm concerned that if this happens to me I won't be able to access a lot those services simply because Immigration thinks I haven't been here "long enough". There's also been a lot of trouble with current systems being inaccessible and byzantine to access. Which all adds to my recurring nightmare because there's possibly a lot of things people will take for granted that I can't actually get!!

(With any luck, if I get into this situation I'd be actually eligible for things and the systems are more reasonable, but you never know)
posted by divabat at 6:19 PM on December 19, 2018

You shouldn't need to be eligible for benefits to schedule an office visit with a hospital social worker. Would you feel better if you could chat with one for an hour or so? Might set your mind at ease. And unless you become ill soon, the whole "not here long enough" problem may become moot. This sounds like a hard place to be. I hope you find the support and reassurance you need.
posted by kate4914 at 6:49 PM on December 19, 2018

I'm sorry that you've experienced so much loss! I hope you never are in this situation but it certainly could happen and it's wise to make plans accordingly. Hope for the best, prepare for the worst, right?

I'd recommend four things:

- First, I'd get to know your neighbors. Some will be unapproachable, others will totally suck but there will many decent ones and maybe a few great ones. If you don't already, start by saying hi or making a short bit of small talk. (Like just complimenting their dog or talking about the weather.) You'll know if and when people want to talk more! Then you could potentially chitchat more, exchange numbers just in case or offer to help each other with little favors. Neighbors may not be the same as family or friends but they often care and will check in. It took over a year of very slow getting-to-know-you but I'm really good friends with one of my neighbors. She helps me and I'd always be glad to help her too! Connecting with fellow single women is extra nice for me because we can help support each other, and know so well the joys and challenges of being on your own.

- Second, while I am not sure what programs are available near you, I see there is Meals on Wheels in Victoria so surely something similar exists in your city. You could even start volunteering with a local non-profit to give back now and make good connections among caring people.

- Third, I'd connect more with community groups of your choice. I am not religious but I know that churches, temples, and the like often provide a wonderful support network to people in need. And some will do outreach and help even to community members who do not belong to their faith or congregation. Are there any local community groups from your parents' home country that you would feel comfortable getting involved with? That would also be a source of support.

- Fourth, I'd stay in touch with online community, which you already are doing! While people online cannot be there for you in person immediately, they can provide a great deal of emotional support, empathy, and encouragement.
posted by smorgasbord at 6:50 PM on December 19, 2018 [2 favorites]

I have cancer, and I'm basically alone. I have a roommate, but she only lives here for part of the week, and it's not a relationship where I'd expect her to take care of me, except in an emergency situation, like driving me to the ER, which she has done. My parents are dead, my sibling can't help, and my children live across the country.

What I'd say to you is that, while it's true that you may get cancer someday, if that happens, you will figure it out. Nobody - even in a relationship - thinks cancer is an easy thing to handle. It messes up your life. But you figure out how to manage because you have to.

Now in Cancer World, one of my pet peeves is the idea that everyone has a "caregiver." When I was diagnosed, they gave me a pamphlet for caregivers, and I wanted to punch someone. And I decided not to have a stem cell transplant partly because they require a caregiver for several weeks afterwards (my friends were adamant that they would cobble a system together for me, but I didn't want to do that). I think a lot of health care is set up to rely on the unpaid labor of women, but women are doing other things now, so it doesn't work for everyone.

But I'm actually doing OK without a caregiver. With the kind of cancer I have, the regular chemo is not very debilitating. I've kept my job and only missed work when I was actually at the infusion center. The hard parts for me have mostly been psychological, not physical.

Really, nothing could have prepared me for the reality of cancer, and not because it's better or worse than I would have imagined. It's just different. When I was young, I used to imagine what it would be like when my father died. I went through all kinds of scenarios in my head and had all kinds of pretend conversations with my friends. (My father wasn't sick, but I just got fixated on him dying.) But when my father actually did die when I was 21, the reality was absolutely nothing like I imagined. I think I thought that I was protecting myself from it by thinking it through, but it didn't help. (I'm not saying you're necessarily doing that - it's just something to think about.)

If you do get cancer, the reality won't be what you're imagining. You may get it when you're elderly, or you may have a completely different life then. There's just not any way to prepare yourself for that.

But if it does happen, you will manage it somehow because you won't have a choice. And it will be OK. You will figure it out.
posted by FencingGal at 6:56 PM on December 19, 2018 [79 favorites]

Not cancer, but I'm more or less in this situation and have been for a while. A few friends freaked out and ghosted on me when they first learned of my illness. My employer is now a bit wary of me falling ill long-term again. Both employer and landlord are unable to hide their dread at having to spend too much to accommodate my new ADA-related needs. I'm now a risk and a potential ADA lawsuit magnet to them.

And it's tough trying to maintain a household, pay bills, file all the massive medical paperwork, as well as be an a-hole, errm, I mean strongly advocate for yourself with health care professionals. If you have to spend time in a care facility, home mail piles up with no one to pick it up, and if you change address even temporarily, your vendors will detect immediately and worry you're pulling something or worse, try to schedule a move of your service to the temp address ( a care facility?)

If you become unable to drive, seek out your local paratransit /wheelchair-transit agency and apply asap. Get what bills you can delivered online and set up online bill pay. That way your remote relatives can help over the web if necessary.

The state and many charities are rather like Toonces the Cat; they are there to help, but they either aren't always very good at it or set up explicitly to be difficult to use. I'm wheelchair-bound, and the entrance to the local disability office is a good 50 yards unpleasantly uphill from the disabled parking spot for no good reason.

Also Nthing others here. We still have yet to emerge from the old 'social security = spouse and lots of kids' mindset.

PS I've seen a lot of very old, lone stroke or dementia patients stored in care facilities. They exist like old records with a skip in them, playing the same memories and outbursts over and over, and with only dim awareness of anything or anyone else. Watching these poor wretches makes me wonder if 'sanctity of life' is just selfish vanity on our part.
posted by zaixfeep at 9:02 PM on December 19, 2018 [10 favorites]

It's UK based, but the group Ageing Without Children seeks to highlight issues like this - both advice for people to prepare for potential care needs, and to campaign to stop the assumption that everyone has someone who will immediately step in an act as a carer. I don't know if a similar group exists in Australia, but this is to say that your worries aren't irrational within systems that expect unpaid carers to 'materialise' when needed. But as FencingGal says, you will deal with this if it happens to you.
posted by Vortisaur at 10:28 PM on December 19, 2018 [1 favorite]

I haven't been in this situation but I've thought about it a lot. I figure not having to burn savings and having money to throw at taxis, food delivery, cleaners or part-time assistance would make things easier. If you're employed in Australia and accruing superannuation, have you filled out the forms to get income protection insurance through your super fund? It will pay up to 75% of your current income if an injury or illness results in you not working for a period of time. I think you can also pay for it privately if you don't have super. Setting this up could help relieve your anxiety and be part of "planning for the worst-case scenario"?
posted by trotzdem_kunst at 10:31 PM on December 19, 2018 [1 favorite]

I recommend befriending neighbours. I moved to a new neighbourhood and planned to stay for a while, so I wanted to create community.

I joined some neighbourhood groups on Facebook and made a point of easing my way in, then posting funny, supportive, appropriate things to make the Facebook group fun. And showing up: going to all the neighbourhood events, making small talk "Hi! I just moved here, have you been here long?" is a super easy opener), going to the local coffeeshop at peak times and hanging out, complimenting people's dogs, etc.

Whenever I find a neighbour who seems cool, I try to befriend them. Like if they ask advice in the FB group, I google for them, or I put Likes and Positive Emojis on their comments, or if they're selling some random inexpensive household item, I'd maybe even buy it as an excuse to make chitchat (several times I ended up staying at their house for an hour for a coffee and then becoming actual friends). Or I'd ask to borrow some kind of tool and make sure to return it, at a time I suspected they'd be home, with a baked treat, nice chocolate bar, beer or wine, and more chitchat. Making neighbourhood friends basically only takes 3 decent conversations.

Eventually I organized some meetups- first just some loose "see you at the coffeeshop this weekend?" and later one at a park. If you can host some neighbourfriends at your house, that's even better for creating intimacy. Or if you find a good social hub person, tell them you want neighbourfriends and they might intro you to some compatible people.

So... now I have actual neighbourhood friends. In a pinch, they could check in on me, drive me to emerg, etc. Most people want to help others, but sometimes the logistics for doing so (like driving distance) makes it hard. Helping a neighbour only takes a minute.
posted by pseudostrabismus at 12:52 AM on December 20, 2018 [3 favorites]

A friend of mine just went through cancer which was ultimately terminal, with no partner, children or housemates. His situation was slightly different in that he did have siblings who were not completely close by, but within reach.

What was striking, though, was that he had a facebook group for his friends, and was extremely open about what was going on with his health, and that led to people really stepping up and helping. One friend took care of his garden, others visited, took food, drove him to appointments etc. I'm sure it was no substitute for knowing there was a permanent backstop there (such as a spouse). But there was a lot of caring, and I think it was because he had no immediate family that all the things he might otherwise have shared with them, he shared instead with us, and we responded in kind. It was a real gift to me (as someone with no partner or kids) to see how he opened up and how that openness was met by others.

So I guess part of the answer is building your community where you are, and also thinking about what your own orientation to such an illness might be - I think my instinct would be to withdraw and keep things to myself, but having seen how much people wanted to help him in response to his openness, I can see that maybe that's a wiser way to approach it.
posted by penguin pie at 5:37 AM on December 20, 2018 [8 favorites]

I agree that this is a hard thing to prepare for in the abstract. There are so many variations on variations on how things can happen. Even if you narrow it down to one apparently specific risk - breast cancer, which is relatively common and which is what I got for my birthday this year - there's still so many unknowns in what you will actually need and benefit from. Both on the treatment side and on the you side.

I am on my own, similar, though not identical to you. I am lucky to have many good friends. It turned out that through my surgeries and treatments, I mostly didn't need and usually didn't want people around - like a cat. But that is due to my specific diagnosis (not needing chemo, likely) and response to treatment (impossible to know how a specific treatment will impact your body until you go through it).

My friends made/make me feel loved and supported and that is priceless, since I've also found that there is a strong mental/emotional component to this experience for me. Mostly what I've wanted from them is someone to come over every week or two to 'supervise' me actually cleaning/chore-ing.

I'm a bit of a worrier by nature and I've thought this out. There's a certain amount you can prepare for - I'm glad for instance that I ended up in a job with great health insurance and good benefits for job security for time off for health. But there's a lot more that we can't.

I think the single best thing any of us can do to prepare for unknown and uncertain futures is to build strong social networks. I feel like the word network is degraded because of its use for professional things, but I mean truly social. Where it's not about what you professionally can do for someone or not, but about the human ties among people.

Family often fills this in but to be honest that can be dangerous too. People with spouses and families assume that they are taken care of on this front and don't necessarily do the work or caring not only to build up larger networks but also to really take care of those relationships - building the healthy ones, scaffolding the weak ones, minimizing/quarantining the toxic ones, etc.

In terms of practicalities - I've budgeted a lot more for car service (have been using it) and food delivery (have not been using it, seem to mostly be wanting super easy toast, popcorn, and bags of salad). I am probably buying a folding bike so I can bike one direction but transit/car the other one if fatigue or weather hits. I took off of work for active treatment, for physical/logistical/emotional reasons that really might have played out differently if I lived en famille, but I don't, so I'm taking care of myself this way; I've been super open about what's happening and that makes my friends more patient with my even-worse-than-usual social-responsiveness times and also invited in a lot of kind support and reaching out even from unexpected places; I basically completely switched to disposable dishes (was already partway there) so I have to do less dishwashing; opened up my budget for silly things like Pokemon Go in-game purchases that divert and entertain me; hmm, can't think of much else at the moment. I was pretty lucky in the world of cancer.

But you really can't know until you know, so there's only so much one can do in advance. Make sweet friendships! It always makes life better, whether you are healthy or not! Also having a cat has been lovely.
posted by Salamandrous at 5:47 AM on December 20, 2018 [3 favorites]

Building on what Salamandrous said about relying on family, a professor I had told me that when his cousin was diagnosed with muscular dystrophy, his wife immediately left him. It ended up being a misdiagnosis, but he was glad he found out he couldn't rely on his wife. In another instance I know of, the caretaker had a heart attack and died while the patient was still alive.

So there are really no guarantees for anybody.

I'm also wondering if you've considered meditation. I've found it has greatly helped with my anxiety about things I have no control over. If you are interested, there are many previous Asks about getting started.
posted by FencingGal at 7:54 AM on December 20, 2018 [3 favorites]

yes, i have (brain) cancer and live alone. i went through 13 rounds of chemotherapy while working full-time and was able to care for myself.

i just sort of fought my way through it, i guess, with the motto of "the only way out is through". because what other alternative was there? my parents were unable to help me and i had no partner; there really wasn't any alternative to sucking it up and getting through it, day by day.

i agree with FencingGal, especially on this point:

>"The hard parts for me have mostly been psychological, not physical."

it's a lonely thing to be handed an awful diagnosis and to have nobody to support you as you deal with how it changes your life, but i turned that loneliness into resilience. my job tried to fire me after they found out my disease is incurable and i FOUGHT THEM LIKE HELL because my literal life was on the line. without my job, i would have no income or health insurance. it cost me a bunch in legal fees, but i fought it, won, kept my job, and just kept going.

>"I'm not currently in this situation, though I may be - it's kind of a recurring nightmare"

if you're not in this situation, i beg of you to enjoy your health. try not to waste it on anxiety about something that hasn't happened. i'd suggest learning to be a resilient person on your own; that's what i've leaned on the most to make it through. since my diagnosis, i've often thought, "it's going to take more than emergency brain surgery to kill me," and that has given me no end of strength in the face of this.
posted by hollisimo at 3:03 PM on December 20, 2018 [14 favorites]

i asked a similar question a couple years ago when i was facing this. you might find it helpful.
posted by hollisimo at 3:06 PM on December 20, 2018 [1 favorite]

I had a health crisis on my own and the hardest part to deal with was that for certain types of hospital and medical things they basically refuse to treat you unless you have a person with you who is going to drive you home -- they were not willing to just let me take a taxi or ridesharing service, and actually required the person who would be driving me to be with me at the start of the procedure and wait around while the procedure was being done. It seems oddly paternalistic.

They don't really seem to care who the person is, or ask how well you know them, or even more oddly do any screening to see if the person might be abusive towards you -- in some cases I think people would be a lot better off with a random taxi driver! But if you don't have any friends who are available or willing, you could probably just hire someone to claim to be your friend. I think you could probably get away with them leaving after the procedure has started.

I'm in the US and maybe it's different in other places though.

Things like trouble cooking and household things can be dealt with in advance by buying a lot of prepared foods, I think that would be more of an issue for an accident rather than something like cancer. Paper plates. Of course with no one else to avoid exposure to or arrange care for, those things don't need to be done. I think people who have someone else in the household actually have it worse off here in some way, there's no guilt about not being able to contribute if you live alone, and sadly I've heard of others whose families who live with them have not been understanding about their not being able to continue to do cooking, childcare, etc.
posted by yohko at 4:03 PM on December 20, 2018 [1 favorite]

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