How to help my parents with my mom's cancer
November 26, 2018 11:49 PM   Subscribe

My mom was recently diagnosed with cancer. My parents live across the country and my dad has been by her side non-stop, but is falling apart. I'm on the phone with them around the clock, and am flying in to spend a week and a half helping, but nothing feels like enough. I don't know how to make any of this letter, and it's killing me to see them both in so much pain. What can i do? How do I cope? It feels like everything is falling apart.

My 62 year old mom was recently diagnosed with lung cancer. She was having pin in her leg for some time, and we assumed it was sciatica... but it was metastatic cancer. She just had surgery on her leg and on her back, which went well. We're waiting to hear back about the pathology reports to determine what the treatment options are. The good news is that the oncologist is very optimistic - she said there are many treatment options and she gives my mom "years" rather than months. The bad news is everything else.

My mom is in a lot of pain, and not yet able to walk. This should improve with time but... no one really knows. My dad is her primary caregiver and is at her bedside as much as possible - every day and some nights. I live across the country (they're in NJ, I'm in California), I have a 10 month old daughter and a full time job. I'm also an only child, and a physician, and have taken on the resposibility of talking with everyone, explaining everything to my parents, etc. I'm on the phone with my dad multiple times a day - and with my mom at night, comforting and calming her down. I'm at the airport now, taking a red eye to spend about a week and a half with her at the hospital.

It sounds like I'm doing a lot, but I feel so helpless and lost. I feel guilty for not having diagnosed her myself, sooner, and for living far away, and for not being able to take away my mom's pain, or my dad's distress. I'm trying to keep them both feeling hopeful and optimistic, but the truth is that I'm barely holding it together myself. My husband, in-laws, and friends are all caring and supportive, but I feel like I'm just drowning in the grief, the guilt, the fear - everything. Tonight my dad told me that he just wants to die too. He doesn't really mean it, he pulled himself together after that, but... wow.

I would love some advice on how to cope, how to help my dad cope, anything really. Thanks in advance for reading.
posted by nightdoctress to Human Relations (11 answers total) 9 users marked this as a favorite
She could have years left, so don't start grieving for her yet. This isn't the end of everything, it's just a really, really hard time. And you've gotta try to let go of that guilt. It's not weird or wrong for people to live across the country from their parents. You weren't her doctor, and you weren't the one running all the tests. Even if you had been, how do you know things would have been any different, or that they'd be better? Would your mother have even wanted to put you in that position?

You're doing so, so much already. Way more than a lot of people do for their parents. Way more than a lot of people CAN do for their parents. A caring daughter who is also a doctor, who calls multiple times a day and can patiently explain all the scary medical stuff... Jesus, did your folks win the kid lottery, or what?!

Just continue to be there for them, to the best of your abilities. That's plenty! And I'd suggest talking to a good therapist, because that's rarely a bad idea and it sounds like you're dealing with a hell of a lot. You're worrying so much about caring for your parents in their time of need, but you need to care for yourself too.
posted by Ursula Hitler at 1:13 AM on November 27, 2018 [7 favorites]

This is the worst part in many ways. The terrible shock, having to confront the extreme pain of what has arrived, the helplessness, and the guilt. This is a hard road, but once you transition from shock into walking forward, it's different in a way that's helpful.

As for coping, it's helped me to realize that this is an experience that many/most people have and live through. Specifically, dealing with serious disease and the (eventual) death of a parent. Friends who have been through this have been of great comfort and are great to talk to because they know and also know the way forward. It's also helped me to not dance around what's happening when talking with family and friends. It can radically change how you relate to your Mom and Dad in ways that are really great. It also helps to remind yourself that there is a limited amount you can do to redirect the path.

Finally, please don't spend time exploring the fantasy that you should/could have caught this earlier. That's magical thinking.
posted by quince at 1:34 AM on November 27, 2018 [8 favorites]

This is very hard. In addition to the relief they will feel during your stay I would recommend you help them by shoring up more long term support that remains after you go home.

Encourage you father to spend a bit of time every day looking after himself. This is a marathon, not a sprint, and he will not be able to sustain that level of exertion for very long. He will feel better and thus be able to support your mother better, if he does a bit of self care. And help him explore local support for caters.

Clearly some of your mother’s current distress is due to treatment and pain. That is not to diminish the fear but it is much harder to calm yourself if you are in physical pain in addition to the emotional pain. As she recovers from the surgeries she might also benefit from contact with cancer support groups. There is a lot of comfort in realising that people can and do live good lives after this kind of diagnosis.

And it may be helpful for them to relieve some of the normal domestic workload for the time being. Arrange for food in the freezer and perhaps a cleaning service so they don’t have to worry about that kind of thing. Every little helps.
posted by koahiatamadl at 2:25 AM on November 27, 2018 [5 favorites]

I sent you mefi mail.
posted by 6thsense at 5:48 AM on November 27, 2018 [1 favorite]

I would focus on 1) spending quality time with mom and 2) exploring and setting up longer-term solutions for day-to-day problems. Helping them find support groups for cancer patients and spouses, for example, is more effective than trying to provide all the moral support yourself. Rather than spend a weekend making a freezing lasagnas yourself, see about local friends who want to help and would be happy to commit to bringing by a meal once a week - perhaps one closer friend could organize this. You have agency to ask for things that your parents might not want to ask for, or might not think of asking for.

IME people really want to help and are afraid of intruding, and will appreciate a chance to do something specific that will actually be helpful. Knowing someone you care about is suffering and having nothing you can do is its own source of pain - being able to help is healing for both parties. When I had cancer I felt very supported by my friends and family, and that was huge.

My parental health situation is completely different but I also feel rather lost and it's helpful to ask myself "Why do I think I need to do X - is this about what will help parent, or is this me acting out of my own anxiety?" And when it's just about my own anxiety, trying to let it go. Sometime it's not at all clear.

Thank you for helping your mom. Sending you both healing and hope.
posted by bunderful at 5:51 AM on November 27, 2018 [5 favorites]

I have cancer and have adult children who live across the country. This is hard on everyone involved. It sounds like your parents are leaning on you way more than I do on my kids. That is understandable, at least at first, but it's too hard long term. So yes, helping them find local support will be a service to them. I don't know them, but it's very possible they want to be more independent and don't want to make things harder for you, but are just too overwhelmed right now. As they get more adjusted to the situation, it will probably be easier to manage. It took me a solid two months after my diagnosis to not be thinking about cancer every single waking moment.

One thing that helps me a lot is the Smart Patients online support group for my kind of cancer. I don't know about the lung cancer group, but the multiple myeloma forum is full of supportive people, and it's a great way to find out that people manage their lives while living with cancer. Just recently, someone posted a request for positive stories of living with MM, and the responses were really helpful and encouraging. People also post requests for practical advice and share information they run into. If you could get your parents hooked up with that, I think it might really help them. It's possible there are other forums for lung cancer as well. I'm just very happy with Smart Patients.

(As far as your guilt goes, please try to let go of it. It took me a long time to get diagnosed - and my non-physician daughter felt guilty afterwards because it was really obvious I wasn't well the last time I visited her. But I was going to my doctors and was misdiagnosed by four before the fifth ran the right blood test [and told me I was lucky I didn't die from the stress test I'd had - my hemoglobin was 4.3]. Diagnosis can be hard, and long-distance diagnosis of someone who is not your patient is impossible.)
posted by FencingGal at 6:55 AM on November 27, 2018 [4 favorites]

This is not just a marathon for your mom and your dad, it is a marathon for you as well. Howdy, fellow only child. It is early days yet. With luck you will be able to love on your mom for many years to come. Either way, I think your main job is to support your parents by offering a realistic perspective, when possible, on their situation; to help them find as many forms of support that are not you as possible; and to take care of yourself as much as you possibly can so it is safe for them to look to your for advice (of all sorts) and support.

You have gotten lots of good advice above. I especially agree with bunderful about focusing on spending quality time with mom and exploring and setting up longer-term solutions for day-to-day problems. I cannot find a link but long ago I read that family members have a choice: they can continue to be the husband or the wife or the child or the parent of an ill person OR they can become the caretaker. The point was that caretaking is exhausting and also really difficult to do while maintaining the relationship you have with the person you love who is ill. That jibes with my personal experience.

There are various forms of support for your dad, and I hope that he uses every bit that is available. My dad gets home-hospice care. We live in different countries. I used to half-kill myself when I visited him by cooking and cleaning. It turns out that he doesn't care about that stuff. I make sure he gets fed while I am there but he really prefers that I spend my time being his daughter. For him, that means listening to his stories, holding his hand, making him laugh, and taking turns with him playing solitaire while we sit next to each other.

Acting like the daughter I am to my dad cannot be outsourced; the household stuff and the medical stuff can, in fact, be outsourced if one has money (a very big if indeed) and/or access to a social support system (friends, church, eldercare services, etc.).

My dad has a social worker who visits maybe monthly. He also has a hospice nurse who visits weekly (more, if needed) and who can give me updates. My dad has also cobbled together an unlikely and rickety support system of strangers he helps who then help him in return, and I have been impressed by his resourcefulness in that regard. (He has other choices for help, he just doesn't want them.)

It is possible your dad believes, as many do, that if you love your family member you take care of them in all ways. Doing that briefly for my mom, before she died, cured me of that idea. Perhaps you can help your parents choose one or two things your dad can do to help your mom in a practical, health- or cancer-related way and then outsource the hell of whatever is left because this really is a marathon.

Your parents' marriage will be stronger and better if your dad can continue being a loving, emotionally supportive husband primarily rather than an exhausted and potentially increasingly resentful (while feeling guilty because the resentment is not on purpose) primary caretaker.

There are many practical things you can do to help now and in the future. Your mom will probably say she doesn't need some things yet, but the point is to have a structure in place so it is ready when you all need it. (Also, if necessary remind her that allowing friends and family members to help, which they will want to do, does not mean that she is going to die. It just means that they love her and want to help during this period when she needs help.)

When a friend of mine was diagnosed with cancer, for example, I suggested we create a Yahoo group for her friends and family so we could share things like doctor appointments, chemotherapy treatments, etc. This was years ago and happened way too late in my friend's illness because she and the friends geographically closest to her were basically in denial. But we finally got it up and doc appointments, chemotherapy treatments, errands, needs, etc. got put on the shared calendar and the keeper of the group would post requests when volunteers were needed to take our mutual friend (who was single) places or to pick up groceries, etc. It was great to have a calendar of who was doing what and when and a list of needs that people enthusiastically signed up to meet. Everybody's name, email, and phone were easily accessible so if one person agreed to do something but then couldn't, it was pretty simple to find a replacement.

There are a variety of specific services available now for ill individuals and their families or you could create something on Facebook. There is one specifically for cancer patients called MyLifeLine, for example.

The thing that is happening to your family right now is overwhelming. It is okay to feel overwhelmed. Just try to remember to keep taking care of yourself and not to blame yourself for any part of what happened. That truly is magical thinking. Which is normal, but not helpful. This stuff is hard. Take care!
posted by Bella Donna at 6:59 AM on November 27, 2018 [3 favorites]

IANAD so don't believe just me, but one random factor is that I don't think young children are supposed to spend a lot of time around people undergoing chemo. Which means, if your mom is going to do chemo, you may want to consider if you can plan a visit for them to spend some good time together before she starts.
posted by nakedmolerats at 8:16 AM on November 27, 2018 [1 favorite]

As a fellow only child with a very ill parent, my heart goes out to you. This is so hard, and not having siblings in the picture to spread the load makes things even lonelier.

How is your relationship with your husband? My husband has been phenomenal at helping me cope with the year from hell by making sure a lot of paperwork is getting taken care of, helping me find therapists when I couldn't handle the emotional trauma in a healthy way on my own any longer, making sure I am eating semi-healthy foods, etc.

You may want to set up a routine with your parents towards the end of your visit - something along the lines of "we'll check in once a day/every other day at x'o clock. If anything comes up in between our calls, you can email me. Please only call me at other times if [dire circumstance arises]." I think a routine really grounds people in the midst of chaos.

When things get really bad and I lose my shit, I just keep reminding myself "I am doing the best I can in an objectively hellish situation." I have to tell myself this several times a day.

Hang in there. This won't last forever, even though right now it feels like you'll never get out of it.
posted by mostly vowels at 12:04 PM on November 27, 2018

I think the triage here is helping your mom and dad cope with the fear of death. The panic is making it worse for everyone. Are they religious? Can you hook your dad up with a grief counselor (as in, literally find the person and make the appointment for him)? Is your mom open to end of life psychedelic guided sessions? Can your mom benefit from a counselor? Can you hire nursing support?

I know it’s hard. Stay as calm as you can yourself when talking with them and do what you need to have a center of strength. (Tough with a 10month old I know.) blessings to you and your family.
posted by St. Peepsburg at 4:16 PM on November 27, 2018

I’m so sorry about your mom and the stress of being so far away. My mom has breast cancer, and I am the only local child. Her prognosis is good, but my brothers and I knew that our dad would be a hindrance rather than a help, so we’ve been trying to figure out how to support her and keep our dad from dragging her down.

Things that have really helped: I posted on my local website looking for healthy food delivery options requiring limited cooking skills (because my dad is worthless and would just bake frozen pizzas every night). My neighbors connected me with a local non-profit that delivers a week’s worth of healthy frozen dinners plus bonus fresh snacks and breads. They don’t deliver all the way out in the suburbs to my parents’ house, but I am able to get the meals delivered to my home or pick the up in person, and then I deliver the rest of the way. I never would have known about this resource, and if that one didn’t exist, I would have signed my parents up for Meals on Wheels. I even had neighbors I never met offer to bring over a pan of food based on my single post. My brothers and I are making monetary donations to the non-profit org, which especially helps my brothers feel like they are helping. I knew that I would quickly burn out if I had to prep meals for my parents, so this outsourcing is a life saver.

One of my brothers came to town for my mom’s last round of chemo and cooked up a storm, plus we were able to enjoy time together. I don’t think that the food he made was worth the stress, but it made him feel good to see the freezer fill up a bit. I agree with others that when you’re in town it may be more beneficial to just spend quality time with your parents rather than try to do all the things.

Our next battle is trying to convince our dad to step up regarding housecleaning, since they refuse a housekeeping service and my dad is not even pulling his own weight there. If your parents are more reasonable than mine, I would try to get that set up for them. I know that therapy will never happen for my dad, but hopefully your dad is again more reasonable and willing to try. If he is telling you that he wants to die, too, he clearly would benefit from talking to a supportive but neutral person. Do they belong to a church? If your dad doesn’t want psychological assistance, maybe he would be willing to talk to a pastor or church support group.

I feel like your being a doctor is putting you on an extra level of stress here that is not sustainable. Have you asked any of your colleagues or friends from med school/residency how they have navigated that line between clinician and family member? You have needs, too, and it is unfair to have to wear your doctor hat all the time when your mom has her own medical team now and you have emotional needs as her daughter.

Also, the book Being Mortal by Atul Gawande might be good for you to check out, if you haven’t already. It’s heavy on the end of life planning subject, which sucks to think about right now, but he also talks about his experience as doctor vs. child and having a parent with a terminal illness. And the conversations he describes will be important to have in the next couple months as you all figure out more about what your mom’s treatment paths look like.

Hugs to you and your family.
posted by Maarika at 6:10 PM on November 27, 2018 [1 favorite]

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