Parent has cancer and I need help dealing

January 13, 2016 6:14 PM

Parent has just been diagnosed with cancer. Quite apart from the emotional devastation, the administrative/family fallout burden is extremely hard to handle and there's just me doing it. Please help me figure out how handle this.

Parent is in hospital with pneumonia. A scan and biopsy revealed lung cancer. I will leave you to imagine what I am going through emotionally.

I am the sole family member present to offer emotional support to my parent and deal with hospital stuff. Luckily parent has full-time carers.

I feel very unequal to dealing with the OTHER stuff I have to at the moment and that is where I need help. I will try to keep this as short and unemotional as possible.

(1) Our family, although they care for my parent, are not being particularly helpful at the moment. I am fielding telephone calls asking for updates a thousand times a day. It's particularly difficult because I need my phone on me to answer important calls from the hospital, so I can't just switch it off - but it's constantly ringing. My relatives are older and don't use text or email. So even a general text update once a day isn't likely to help.
(2) Family members have conflicting opinions on treatment options. Parent is going for chemotherapy and I'm supporting the decision, but I'm getting a lot of pushback from other members of the family - "How will you feel when you see how sick the chemo makes them, knowing you encouraged them to make that choice?" This makes me feel so terrible.
(3) Parent is... stubborn to put it mildly, and will not agree to taking financial aid to help fund treatment even though it is available. My family members are going nuts about this, calling and haranguing me, telling me I must MAKE them take the financial aid. Anyone who knows my parent knows that they are not going to do anything they don't want to do. But if I say this, I'm apparently a bad person who doesn't care about her parent. Apparently a good daughter should force her parent into doing something they doesn't want to do. Parent is sick in bed, not at all mentally affected and I am trying to respect their autonomy as much as I can.
(4) I have no one to delegate to. My parents are divorced, siblings abroad. Other parent supportive, but there's not a whole lot they CAN do for practical support apart from listen and be there (which is huge).
(5) I am relocating from the UK to the Asian country where my family lives. So there's a WHOLE lot of admin related to that. My friends in the UK are being helpful but there's still a lot of stuff that needs to be done with that which I don't have enough hours in the day to attend to.
(6) The grief, the fucking grief.

I'm just... I feel like I'm about to break and I CANNOT break now. But I am getting so beaten down, I feel guilty and like I am a horrible person, and like I am jeopardising important family relationships at this time when support is most important.

posted by anonymous to Human Relations (18 answers total)

Is your parent in the UK? If so, contact the NHS (for help for yourself.) In the US there are social workers connected to hospitals and even specifically to the cancer units; it looks like that's true at least some of the time in the UK. Those people are there for the family as well as the patients.

Also, if it helps, I'm giving you permission to change the ringtone for all those family calls to "silent." Alternatively, get a second cheap phone for the hospital and other actually-urgent calls.
posted by SMPA at 6:25 PM on January 13, 2016 [2 favorites]

Ugh, I'm so sorry. Can you get some sort of voicemail or messaging service where you can record one update a day and people can check it and listen to the update, and leave you a message if they want to?
posted by roomthreeseventeen at 6:29 PM on January 13, 2016

I am so sorry you're having to deal with this.

You're on the front lines, dealing with your ailing parent. That's enough. You shouldn't have to be dealing with all the other members of the family, deflecting and/or answering their concerns, etc. This is where one (or more) of your siblings come into the picture. Let them be the liaison to the rest of the family. That will insulate you from all the other craziness because, let's face it, you've got enough craziness to handle dealing with a sick (and probably scared) parent.

The people around you, both friends and family, all want to be helpful. Beyond having a sibling run interference with the family, it's possible that one of your UK friends can take the lead role in coordinating your move. Let them. It will make them happy.

I guess what I'm saying is that the key here is to prioritize. Your priority is your parent. All those other people around you who want to help can be deployed to handle the other very important yet less urgent pieces. Having been in a similar situation, my advice is to focus on doing your job and let others do their jobs. That's the only way to get through this.

Your own grief, unfortunately, will have to be dealt with around the edges, in stolen moments. Expect that it will linger far longer than seems reasonable, but that's just the way it is.
posted by DrGail at 6:35 PM on January 13, 2016 [4 favorites]

Can one of the people who is calling you be a the point person for updates and information?
posted by orsonet at 6:36 PM on January 13, 2016 [5 favorites]

I have (sort of) been there. My parent got a scary diagnosis and surgery and wound up being able to maintain on medications for a good while (still, in fact) thanks to wonder drugs. So part of this is the awful not knowing, which is the worst. My advice which is just advice

1. get you to a support group so you have a place to unload your own concerns
2. stop answering the phone from relatives and give them a Google Voice update number where you will record a daily update for them and literally stop answering the phone. It's okay to do this. Or find the least noxious relative and make them the point person for news and they can disseminate to everyone else.
3. Ignore them when they talk about money or encourage them to set up a bank account with all their $$ in the meantime and you will "work on your parent" at a better time but shut up for now (to them, in your mind) and table the topic
4. manage your own stress like it was your JOB, which means trying to be kind to yourself but also get exercise and all the rest. Only you know if it's better to go out and unwind with a drink or better to ease off the drink (as one example) but take your own temperature and try to do the things that are nice for you

The charitable interpretation is that hey too are worried and this is their coping strategy. Doesn't help you really but might help you find a place of compassion for them. In the meantime you have to work on your place of compassion for you and finding someone who knows and cares about you and whose opinion you respect to bounce ideas off of so you can feel more comfortable that the things you are doing are okay.
posted by jessamyn at 6:41 PM on January 13, 2016 [4 favorites]

When my family was going through this, we often went to doctor's appointments together. There are so many medications, treatments and choices that you'll be required to make wise decisions about, I recommend you do what my uncle did - take a notebook to every single doctor's appointment and write everything down. Don't worry about wasting the doctor's time and make sure you understand everything thoroughly. Additionally, when you write things down, you'll always have a record of facts and feelings and can let up on letting swirl around your brain while you try to remember it. Copious notes!

Please take care, find support where ever you can and take time to care for yourself.
posted by bendy at 6:51 PM on January 13, 2016

I can't add much to the above advice.

Dealing with your relatives isn't part of your job description at the moment. Really. You're too busy and they have nothing of substance to offer...let go of whatever notions you may have of behaving "perfectly" towards everyone-even if it's just a cultural norm you're living up to. This is not the time to indulge their notions that you can be counted on to be uber responsible.

Just be there for your parent as much as you can bear. Look after your own health. Make time to get away and unwind. Don't expect perfection from yourself.
posted by bonobothegreat at 6:51 PM on January 13, 2016 [1 favorite]

I take care of someone now for nearly a year and a half (just how it is.) There had been talk about cancer in one place, so I lined her up for tests, and no cancer there, but a .75 cm lesion on one lung in a bad place. OK, at 85 she decided to do nothing. It meant a wedge resection just to get a biopsy and that was a year and a half ago. She is in a steady state. A couple of months ago her daughter decided to get her to take concentrated fruit juices that cure cancer. She finally had to go through her grief and decide to support her mom's decision. Now mom is waffling due to TV ads about DNA directed cancer medicines. OK I will be the one who implements whatever decision she makes. Get your mom to write a letter to everyone to get off your case, and get counseling where they are, because you can't serve your mom and be the family emotional toxic waste dump. Best to you and all you are going through.
posted by Oyéah at 7:49 PM on January 13, 2016 [1 favorite]

You have to delegate things. You can't do everything. Don't be afraid to be emotionally manipulative to get people to help. Call them in tears and say you're overwhelmed, then tell them the specific, concrete thing you want them to do. Call in favors. I had this exact thing happen to me in 2013. You just have to decide what you can reasonably do and then assign the rest to other people.

I know you feel like you have to keep it together, but you have every right to get crazy and upset. Vent to those you trust and guilt trip all the other "concerned" people until you can assign them something useful to do. Sometimes family will surprise you.

Tell your parents that you love them every time you see them. Sometimes cancer moves fast.
posted by irisclara at 7:49 PM on January 13, 2016 [2 favorites]

My dad, who is 85, is dying very slowly from a chronic heart condition. Everyone at the hospital where he has stayed at times has their knickers in a knot because my dad used to have a do-not-resuscitate order then he rescinded it. They keep trying to get me to overrule him and I'm like, it's his death and it's up to him. My dad is also stubborn and refuses to take various types of aid. And I've been yelled at by a few people for being a terrible daughter. But I am a wonderful daughter, because I am helping my dad even though he's been a huge pain in my ass most of my life. And I am helping my dad primarily by supporting his decisions because it is not my life, it is his life. And feel free to remind people of that. And you don't owe any of those people, relatives or not, anything you don't have to give them. Such as extra time and energy. So do what you can to take care of yourself because no one else is going to. Delegate everything you can, take all the shortcuts you can, and enlist the help of your other parent. Perhaps your other parent can record updates or deal with relatives. Good luck!
posted by Bella Donna at 8:03 PM on January 13, 2016 [5 favorites]

Can you ask each of the elderly relatives to get a tech savvy friend or neighbour to send a text/email to you and you can do a bulk text or email to them as your busy supporting your parent.

"Aunty Niesha, I haven't got the battery on my phone to take calls and make calls while the hospital and doctors are calling me so often. Can you give this email address/mobile phone number to (tech savvy close person of choice ) and get them to send me their contact details? I'll put them on a priority text/email list which will be updated every moment there is an update. Kthanxbye. "
posted by taff at 10:04 PM on January 13, 2016

Your parent's treatment choices are his/hers to make. Chemo can be painful, but there have been great advances in the past few years in managing side effects. It won't be a picnic, but you shouldn't feel guilty if your parent is in pain. Tell your relatives that when they have cancer, they can decide to forego treatment, but your parent has decided that chemotherapy is right for him/her.
posted by Sara Anne at 12:14 AM on January 14, 2016

Also, be sure to make friends with the nurses. Nurses never get enough appreciation.
posted by Sara Anne at 1:53 AM on January 14, 2016 [2 favorites]

Set the ring tones of most of those relatives to silent then set aside a time to make the update calls. If at all possible, try to find a single person for each relative group to be pointman (or pointwoman) and limit the calls. When the questions and haranguing get too much in any individual call, tell them that someone else is calling on the other line and hang up.

The other thing to consider is that this onslaught from your extended family is likely to diminish over time. Right now everyone is in panic mode. Hopefully over the next week or two they'll become less demanding.

Sending you about 50 hugs to be taken as needed. You're being a wonderful kid to your parent.
posted by sciencegeek at 3:12 AM on January 14, 2016 [1 favorite]

Had a parent who has now sadly passed from lung cancer so I know what you're going through - the point of diagnosis was absolutely the most devastating experience of my life.

Don't worry about getting back to people if it is overwhelming you - they will likely not understand your distance, but you and your immediate family are undoubtedly experiencing a great deal of grief, and the most important thing is that you're there for each other.

In terms of the treatment, please know that people's experiences differ greatly with chemo, and many are not the horror they are made out to be - people's generic assumptions on what chemo is an isn't are not relevant in the case of your parent. You will only know how they will react when they undergo it, and a doctor is best placed to make a decision on their ability to handle whatever chemo your parent is being provided with as their side effect profiles all differ. Make sure you have your parent have genetic testing for an EGFR mutation, particularly if you are of east Asian descent, as it is quite common in that population, and means a single pill a day as opposed to chemo. Ultimately it is the choice of the person with the cancer to undergo treatment, which is something your doubting relatives need to understand, and you should tell them that.

Let people help you - at a time like this, people like to feel like they can do something, so where you can delegate, particularly anything relating to your move, please do it.
posted by ryanbryan at 3:45 AM on January 14, 2016

Create an account on CaringBridge.org. Update it once a day. Appoint a friend or tech savvy relative to be "the person to call." Tell everyone to either call that person or check the Caring Bridge website for updates instead of calling you. The person you appoint will get their information from the website and relay it to whoever calls. Then you ignore all calls except the hospital, or answer inquiries with "Please contact Tech savvy cousin."
posted by rakaidan at 4:47 AM on January 14, 2016 [5 favorites]

I am training in Oncology so this is something I see daily. In situations like this, there must be one outgoing communication daily. Caring Bridge is great, or a daily digest email. You can also pick one person and make it their job to update people and collect questions. This is my favorite because it also takes some of the "questioning all decisions" discussion away from you. You get to say, "I am busy and focused on taking care of relative. I will update alternate family member daily and they will let you know what is going on as well as collect your questions and pass them along to me. " Then you can sort and sift through the questions at your own pace.

As far as how sick chemo makes people: Every body responds differently to chemo. We have come a long way in terms of side effect management and whole I would never suggest that people never have the side effects we typically associate with cancer treatment, you won't know what their side effect burden will be until chemo starts.
posted by honeybee413 at 5:06 AM on January 14, 2016 [5 favorites]

I am sorry you are going through this. Following are a few thoughts; I hope you'll find something useful.

Regarding #1-3 - you can't do a thing about things pertaining to other people's thoughts/actions/opinions. What you can do is not make the situation feel worse by letting your mind drift into the I-must-be-a-(judgement)-daughter track. I am appalled that people have said such things to you when they should really zip it if they are unable to be supportive. You know, you are doing great given the circumstances you are in and anyone who tries to tell you otherwise does not need to be talking to you right now. So, check this off of your list and minimize the energy that's draining out of your limited emotional tank (and esp towards other people) and into #1-3.

#4-5- you know exactly what you can and absolutely need to do. Bring your attention back to these two when you are emotionally overwhelmed. There was a not-so-great time in my life when I would obsessively clean my apartment. Interestingly, I was acutely aware of it while I did it. I had to think about it much later as to why. The reason was because that was the ONLY thing I could do at the moment and it made me feel better afterward, even though logically it made no sense at the time. Do what you need to do in the moment to stay balanced. In fact, pay attention to the little things that you can hold onto like a railing - you can let go when you feel more balanced but hang on to things that add to your emotional well being in the moment. Ditto for people- strangers and close friends/family alike.

Follow good exercise, diet and sleep regimen. Meaning? 30 min daily- walking to the Post Office to inquire about mailing options for the move does count. Paying for a healthy meal vs skipping a meal because there is no time does count. Dozing off two hours in the afternoon because you were up late packing does count. These three count on so many levels that don't even think about "deciding" or "feel like" to do it. Just do it. In fact, use the discipline to your advantage.

#6. Is it possible to find support groups in your area for people in a similar situation (ill parent)? Grief will be an on-going process and you just keep putting one step in front of the other. So, shutting down your mind (when you can) about future and pulling your mind back into the present moment may help. If it doesn't that's okay too. Not everything will help all the time, every time. And, having a good cry is underrated!

I also want to add that don't hesitate about being vulnerable to people in support groups or outside your support circle if they are trying to help. Keep expectations low, be open and practice self-soothing and self-compassion daily.

Finally, email is in profile!
posted by xm at 7:39 AM on January 15, 2016