How long should I stay with an ailing parent, if I'm deeply depressed?
May 1, 2016 5:36 AM   Subscribe

...Jeez, even typing that sounds bad. My mother has been given 2-3 weeks to live, based on a diagnosis of Acute Leukemia. She's also got a compromised immune system, due to a liver transplant over 20 years ago. I flew out immediately when she was given the diagnosis, and it is now going in to our 3rd week. She's a fighter, and I knew that. But I'm a continent and several time zones away from my life and my job and so very depressed. She's still going strong - - tired, but strong. And I don't know what to do.

In a perfect world, I'd stay here until she dies. I would like to be here for her (and my stepdad), as she was there for me growing up. It just seems natural. We've had wonderful talks about our life, her life, death. Her quality of life is quite good, and the palliative care she's receiving is beyond excellent. Lots of time to visit, share favorite foods, etc. Me being here for her makes her happy. For the first 2.5 weeks or so, that was more than enough for me to keep going. And I know it is an honor to be with someone as they pass. She's put a lot of love out into the world, and deserves it.

But now, I seem to be sinking. My work is indeed putting more pressure on me, but, so very selfishly, I'm deeply, deeply depressed for other reasons. My normal life, with husband and cat and friends, a career, and a ton of independence, seems very far away. I didn't have a great relationship with my mother as a teen, and strangely, I feel very much the same sort of powerlessness (and strangely, anger at it) as I did before. Which is terrible. I feel terribly guilty for being such a navel gazer when I'm a grow woman, and the priority here should be my mother.

I guess I'm trying to navigate my feelings about all this and snap out of it, try and be present. But as each day is the same as the next, I'm just sinking deeper and deeper. I would deeply appreciate any advice.
posted by anonymous to Human Relations (23 answers total) 7 users marked this as a favorite
It sounds like you need to take some time for yourself. Can you escape for a day, go on a long drive, go on a long walk at least? Do this a few times a day? You need time and space to rest mentally and to process what's going on and to stay connected to your own life internally. Anyone would need this. It's as much a need as eating and sleeping.
posted by PercussivePaul at 5:53 AM on May 1, 2016 [14 favorites]

Is it possible your work could give you some tasks to do from where you are? Maybe spending part of the day out of the house, working from a library or cafe, would bring some balance while still letting you be on hand for the end.
posted by lakeroon at 5:53 AM on May 1, 2016 [12 favorites]

I might go home for awhile, recharge the batteries, tend to your life there, and have an open-ended ticket to fly back when the time comes.

You've done a lot for your mother, and it's natural to have conflicted feelings. At this point, there's nothing unsaid between you two, so if she should go suddenly while you're at home, although you'd prefer to be there for her, it will be okay.

Here's how you couch it, "Mother, it's been so good visiting with you, and I'll be returning soon, I need to go home and attend to things there. I'm only a flight away."

Speak to your job about what you expect if she enters her last decline, or even go back for two weeks, and then fly back out again.

YOU matter too, and you need to go home to your life.

Take care of yourself!
posted by Ruthless Bunny at 6:01 AM on May 1, 2016 [9 favorites]

This comes down to personal values.

A short break, such as going to get a massage or going to a movie, sure. But there is no way, no how, that I would go home in your situation. You can't predict when she will die. You can't assume that you can fly back when the time comes. I would feel like shit if I went home and she died without me by her side.

This only happens once. You only get the chance to be there for her once. If you miss it and regret it, it will be some of the deepest regret anyone can feel.

I know it feels hard, but if you're anything remotely like me in the way you feel about your mother and about what you should do --and it sounds like you are, based on your words--you need to suck it up, be there for her, and then do your emotional collapsing after she's died. Your life will still be there.
posted by mysterious_stranger at 6:10 AM on May 1, 2016 [58 favorites]

I wish you wouldn't feel guilty about your reaction to all of this. When my mother was sick, the day to day was much as you describe, and it is draining to say the least. (Right down to the feelings of powerlessness and anger which you vividly describe.) Do you have a palliative care person who comes to the house? Maybe they can connect you with a caregivers group or a social worker at the hospice organization. Or you could call the organization directly. Even one meeting might help. You know that thing they say about putting on your own oxygen mask first? If you're not getting enough sleep, or good sleep, see someone about getting sleeping medicine in the short term.

That said, I think Ruthless Bunny has a point here. You need to have your life there when you get back. Whether or not you decide to go home for a while, I think it might be a good idea to talk with your employers and clarify expectations on both sides. Having pressure from your job in an unclear situation (timewise) is not helping, I am sure.
posted by BibiRose at 6:14 AM on May 1, 2016 [1 favorite]

It seems very natural to be depressed in this situation. You are anticipating a significant loss.

Otherwise .. do you have friends or support in the area where your mother is? If so, reach out to them and arrange coffee or lunch. The hospice or other facility through which she is receiving care may have a support group for people caring for loved ones or grieving a loss. If it's possible to find a therapist, that could be another source of support. If you are religious, finding a local house of worship to visit might be comforting.

If you can arrange to work remotely for a few hours each day, perhaps that would help you connect to your sense of independence and stave off concerns from work.

And take care of yourself - make sure you are getting plenty of rest and decent meals, and try to get outside for a walk or other exercise every day.

Good luck, OP. I'm sorry you are in this situation.
posted by bunderful at 6:15 AM on May 1, 2016 [3 favorites]

OK, your first task: stop thinking of this in terms of guilt. Caring for a dying relative is fucking depressing. Of course you're depressed. Of course part of you would rather be at home with your husband and your cat and your friends rather than here watching your mom die. That impulse to go is as real, and natural, as your impulse to stay. Observe it in yourself but don't judge it. The judgment is what we call the 'second arrow' of suffering - you have a bad feeling, and then you feel bad about feeling bad. When you free yourself from that second arrow, a whole lot of suffering becomes bearable. So start there, by forgiving yourself.

The second thing, I think, is to start thinking about this in terms of a slightly longer timeline. I imagine you arrived in crisis mode, thinking that (as mysterious_stranger put it) you could pour yourself into this 100% and then do your emotional collapsing after your mom had died. But I think two weeks is about the maximum that you can operate in crisis mode, booting your emotions into the future - after that, burnout starts becoming a real danger. When a situation become slightly longer term, as is happening now, you have to deal with your emotions as they come up. So start thinking about how you can make this situation sustainable day-to-day: take on some part time work; carve out some time for yourself, do yoga or meditation or go to church if that's your thing. Going home is certainly available to you as an option - you're not trapped where you are - but see if you can't make some space for yourself where you are. I bet that if you stop beating up on yourself and allow yourself to step back a bit, you'll feel a lot better and you'll be glad you ended up staying in the end.
posted by pretentious illiterate at 6:20 AM on May 1, 2016 [50 favorites]

You do not need to "snap out of it"; the conflicting feelings you are experiencing are absolutely understandable in your situation. If your mom is getting hospice care (whether at a facility or at home) then the hospice will almost certainly have counselors available for you to have a short chat and unload with. Hospice workers are absolutely aware of the emotional stresses loved ones of terminal patients experience, and providing support for them is part of what hospice is about. I am sorry for what you are going through and wish you the best.
posted by RRgal at 6:22 AM on May 1, 2016 [3 favorites]

I'm so sorry. What a brutal few weeks.

In my experience, hospice workers can be great supports for family members dealing with the dying process and grief and all that comes along with it. When a friend of mine died of cancer, they offered grief counselling to her partner and her mother for over a year. It's worth looking into.

I have grief materials from those hospice workers and I can send them to you if you MeMail me (or ask a mod to).

I also wanted to say that the anger and conflict and "navel gazing" and depression you are feeling are completely normal parts of the grief process. This is part of the process, and it's not selfish of you. Please give yourself room to be upset. It is one of those "the only way forward is through" kinds of things. Grief is messy.

Hang in there, and please feel free to post another question here afterwards. This community has lots of good advice and resources on grieving and depression. It's going to suck, but you can make it.
posted by sadmadglad at 6:23 AM on May 1, 2016 [1 favorite]

My mum died on New Year's Day 2014 nearly two years after her diagnosis. I live only 2 hours away, but even so, it was exhausting, and I did feel like I had to come back to my normal life. I drove back and forth two or three times a week for two years and it was horrible. The hospice didn't call us when they knew she was on her way out, so nobody was with her when she died, and that sometimes keeps me up at night. I felt guilty every single day I DIDN'T make the drive to see her, I felt guilty for doing the things in my normal life that kept me sane, I felt guilty all the time. But the fact is that I did the best I could under the circumstances, and you just need to decide what you need to do to feel the same way.

Your mum sounds like she has less time left than my mum did (you can only be in grief mode 24 hours a day for so long before you NEED to do something else), and maybe staying and finding some way to get away and look after yourself is what you need, but please, please, please don't feel guilty if you decide you need to go back home. You must look after yourself, you can only put your life on hold for so long. Try your best to look at this situation without the filters of history and guilt, you have done a lot already, it is OK to look after yourself however you see fit. People always try to advise you based on how they feel, how their own experiences have shaped them, and I am no different, but when I have those sleepless 3 AM moments wracked with guilt about my mum dying alone, I remind myself that I WAS there much of the time, I DID have the conversations I needed to have, I TOLD her the things I wanted to tell her, she knew I loved her.

Dying happens, all we can do is our best to find ways to cope with it. You will live with your mum's death for the rest of your life, think hard now about what you need to do in order to be able to think about it as comfortably as possible in the future. She is going to die, you don't really know when, and you need to find a way to help yourself cope with it. The single best piece of advice I can offer you, as someone who has lost too many people close to me over the last few years, including both parents and my best friend, is to be kind to yourself. I am so sorry you are going through this, MeMail me if you like.
posted by biscotti at 6:37 AM on May 1, 2016 [7 favorites]

If you have the sense that your mother could begin a fairly rapid final decline at any time, I have to agree with mysterious_stranger that you should try to figure out a way to stay. If, on the other hand, it's a situation in which it might be another week or it might be another month, and you might get enough warning to get back in time... well, you can't stay there forever. But it's absolutely true that you will only get one chance at this, and you will live with the results of whatever decision you make for the rest of your life. That's something you need to figure in.

If you have the sense that the end is coming near, is there any way your husband might be able to come out and join you? When my father died, I could not have made it without Mrs. slkinsey.
posted by slkinsey at 6:54 AM on May 1, 2016 [1 favorite]

You don't say this exactly and maybe it is not a factor, but when my mother died over the course of a year, one of the ways I justified taking long breaks away was that the longer I stayed, the more I desperately hoped she would die to get it over (rather than desperately hoping she would be alive a little longer, which is what she herself was doing.) I thought the mental consequences of hoping and hoping that my mother would die as soon as possible and at all costs preventing her from realizing what I hoped for would be worse than the mental consequences of missing her last days and letting her die without me. And so it would have been worse. for me.

I can also say that the world is full of people who will tell you not to feel guilty about anything you ever do. Most everything you might do under these circumstances is going to be forgivable and probably nobody close to you will hold it against you no matter what you decide. This is a good thing for the most part but is a uniquely horrible feeling to have done something wrong in your own moral estimation and be the only person who knows that your guilt is justified. almost like gaslighting, as people like to call everything these days - trying to talk to somebody about one's abandonment of a dying woman and being told that nothing has happened that needs to be excused. it's dreadful. particularly dreadful because the more people prioritized my precious emotional well-being and told me anything was allowed for me, the more nakedly they showed what a nothing they thought of my dying mother and it showed me what my own last weeks will be like: you get close enough to death and all compassion is withdrawn and redirected to the bereaved as if it is their drama and not yours because you are effectively dead already. This was the worst thing of a year of worst things.

So take any short breaks you can, take a couple days in a hotel away from the house if you can afford it, but I would not leave the city or the continent if I were you unless your mother tells you, unprompted, that you should (my own mother got irrationally terrified that I would lose my job & so I could justify some breaks on those grounds - pretending I was doing it for her, and it did reassure her that I'd be ok after she died.) There is some comfort in being able to tell yourself, after it's over, that you did everything as well as you could. Not much but a tiny bit. It will not make anything any easier for you right now but watching someone die is an exercise in tolerating the intolerable, there is not much you can do to make it better. I did find it helpful to tell myself endlessly that I had no choice but to be there; this was not true but it is much much harder to hold yourself in pain when you have the power to step out of it, it's very perverse and unnatural even when you believe it is right to do. it is where a lot of the pressure and anger comes from, I think, rather than denial or anything like that. if there are people who are behaving markedly less well than you, it may help to yell at them a lot, it helped me.
posted by queenofbithynia at 7:18 AM on May 1, 2016 [10 favorites]

Her hospice/palliative care people should have some resource for family members to talk to -- maybe a social worker, or a grief group -- about these perfectly normal feelings that you're having. It might help.
posted by Eyebrows McGee at 7:27 AM on May 1, 2016 [1 favorite]

I worked for several years doing grief counseling. It is extremely common for people who are dying to "hold on" while their loved ones are present and then die when they are alone. It's something hospice workers generally acknowledge and talk about. My clients would often have immense feelings of guilt about not being there at the moment of their loved one's death, but I have come to believe that the dying person may not always want an audience and/or wants to spare their loved ones from witnessing that moment. We place a lot of importance on "being there in their last moments," but even when people are in the house, they may find that their dying relative waits until they leave the room. I say all this just to let you know that even if you're geographically present, "missing" her last moments would be well within the range of normal, and while guilt may be a natural reaction at first, I always hope it's something people can come to terms with as generally not their fault and often, I think, the dying person's choice.

Another natural reaction is to experience relief when the loved one does die, or hope that the death will come more quickly, especially if the dying person is suffering or in pain. If those feelings come up, please recognize that they're normal, not pathological, and do not make you a monster of any sort.

A former supervisor once said that there are four things people tending to dying loved ones should ideally go through with them:

* I forgive you.
* Do you forgive me?
* I love you.
* I will miss you (e.g., talking about the impact the person has had on your life).

You sound like you're doing great with the last half of that list but maybe struggling a bit with the first half. If there are hospice grief counselors available to you, you might want to think about sitting down with one and talking about the conflicting feelings that are coming up for you about your relationship with your mom. If she's not officially in hospice, you can still google the town/city/county name and "grief support" and see if there are agencies or groups that could help. It may be that admitting and working through some of those difficulties will ease your overall depression. (And if you can't get to forgiveness before your mom dies, that's ok. It's something you can continue to work on, if you want, or you may decide it's not what you want to do, and that's ok, too.)
posted by lazuli at 8:37 AM on May 1, 2016 [37 favorites]

Your feelings sounds completely normal. I'm sorry that you are going through this. It sounds like you ultimately want to stay with your mom. If you decide to leave though, that's OK too. If you decide to stay, I agree with other posters that you need to take time for yourself. When my grandma was in hospice and I flew out there to spend time with her, I absolutely needed time to myself. I needed to leave the hospice and get fresh air and try to enjoy the sunshine. I found it difficult to enjoy the things I was doing because I kept remembering that my grandma couldn't join me. I needed that time though.

I missed my life back home too, but I am glad that I was able to stay with her during her final days. Ultimately, she decided when she wanted to die. She asked the hospice nurses to increase her level of morphine one evening after we had left. She didn't want us there at the moment she died and I respect that decision, even though I wanted to be there for her.

I wish you the best and want to tell you that you are doing the best you can in this situation and there are no wrong choices.
posted by parakeetdog at 10:26 AM on May 1, 2016

Reading what a few others have written about the dying person waiting until the loved ones have left the room to pass on... does your mother want you there in her final moments? What are her wishes? Perhaps this time you have already spent having those talks are more important than being there the exact minute she passes on.
posted by cristinacristinacristina at 11:19 AM on May 1, 2016 [1 favorite]

I can only speak from my experience, but I remember being there for my father in the very last moments, holding his hand as his breaths became even more erratic. He was semi-conscious by then, but I remember waiting through the night as I knew he was going to die and that moment meant a lot to me.

The last three weeks were very hard, and we even had several stressed angry conversations even as he lay dying. I regret that, but I have come to forgive myself as we were all in an unhappy place. It is okay to be tired, it is okay to take time away for yourself, and recognise that you too are human. But I never regretted staying by his bed side to the very end.
posted by moiraine at 12:32 PM on May 1, 2016

It's more important to be with and love a person while they are alive than to be present in their moment of death. Yes, it would be meaningful to be there for that, but the time spent with her sharing life really matters more.

Dying people want to have fun, too. Get some movies to watch with her, some good music, have good food even if she can't fully partake. In the hospital, we threw a wedding reception for my brother and his new bride, sang Christmas carols, put up lights, and watched funny movies. I know he loved it. He also had heart-to-heart talks with us all and was amazing at recognizing his coming death. Is there a big box of family photos to look at? Family movies? It's not all fun and games, but if it's all intensity, that will just exhaust you. It's not always possible; when my Mom was slowly dying, her COPD made her so cranky that I absolutely had to get out of the house, which she bitched about, but I really had to.

Get out of the house/ hospital. For walks, a movie, the library, whatever. If you can do some work remotely, do. Call home a lot. Ask friends to send texts or music or whatever would feel good.

In the long run, caring for your dying Mom, being loving and present, will feel better. But you can temper it with being good to yourself.

Sending a big hug, and same to everyone who is, has or will deal with a dying loved one.
posted by theora55 at 1:52 PM on May 1, 2016 [1 favorite]

I would also add: You will likely feel guilty after your mother dies and beat yourself up for not doing more, because almost everyone feels guilty after a loved one dies and beats themselves up for not doing more. It's a way we try to regain control after loss or trauma; our brains start telling us that we were somehow in control, that we could have done x or y or z and changed the outcome, even when we obviously were not in control and could not have changed the outcome, because often the realization that life is so out of our control is too scary to accept. The guilt can also often be inverted compassion, a completely understandable wish that we could have done more.

You can only do what you can do. Feeling guilty does not automatically mean you're doing something wrong, or that you did something wrong.

*hugs* if you want them. It's a tough situation, and I wish you peace with whatever you decide.
posted by lazuli at 6:18 PM on May 1, 2016 [2 favorites]

My grandfather died of that acute sudden onset leukemia. The day he died was the day they passed the ACA and he sat up and pumped his arms and cheered. He was chatty all afternoon, and died at 8 PM.

If I were you, I would talk again with the doc before you consider leaving. It can deteriorate incredibly quickly. They may be able to give you a more specific time frame if they've done bloodwork since the prognosis.
posted by The Noble Goofy Elk at 12:42 AM on May 2, 2016 [2 favorites]

I guess I'm trying to navigate my feelings about all this and snap out of it, try and be present. But as each day is the same as the next, I'm just sinking deeper and deeper. I would deeply appreciate any advice.

I can't tell you whether to go or stay, but if you do stay, it might help to set up a routine for yourself that doesn't involve only caring for your mom and gets you out of the house/hospice a bit. Take a walk for an hour every day (or sit outside reading a book), go to a daily yoga class, go to the library one morning once a week, take a coloring book or a novel or silly magazine to a Starbucks once a week and stay for two hours. Just little bits of time to keep yourself going. You might schedule everything the same way you would schedule meetings or appointments at home- it will give you something to look forward to and keep you from feeling too unmoored. It will also give you something to talk with your mom about and hopefully make you feel less like you are just waiting for your mom to pass.

If you are able to and in a place where it's needed (suburbs with no transport, etc), maybe you could rent a car if you don't have your own transportation. Even though it's a small thing in the face of your mom's illness, relying on other people for transportation can trigger that dependent/powerless/trapped feeling very strongly for some people. If that's you, it might be worth spending your way out of it.

I'm very sorry to hear about your mom. I'll be thinking of you in the next few weeks.
posted by Snarl Furillo at 3:34 AM on May 2, 2016

I just went through this. I live in the US, I'm from the UK.
My mother was given 6-8 weeks to live. I immediately flew home for 2 weeks with my boyfriend. I then was basically on call to return as soon as my father said she was rapidly declining. I knew my boyfriend wouldn't be able to go. It terrified me that I would have to go back alone and watch her die alone. I got the call from my Dad, "she's suddenly really sick and you need to come home". I flew out that night and I got home and she died 5 hours later. 7 weeks after we were told she was dying. I am so so so glad I was there when it happened. It was horrible but having gone through it, I am so glad I did. I flew home 2 days after she died to be with my boyfriend and be home and in my comfort zone until the funeral, then flew back for a few days to say goodbye to her.
I felt exactly as you do, it is exhausting. My life isn't in the UK anymore so being there and going through the most traumatic thing you can imagine, is heart breaking, exhausting and incredibly depressing. You're there alone and you're not with your own little family.
If you're unable to go home, do what others have suggested, get out of the house. Go get your hair done/nails done. Go shopping. Reading was a game changer for me. It's the only thing that 100% took my attention. I read adventure books that had no relation to the real world and totally took over my brain. You need an emotional break. Watch stupid romantic comedies. Talk walks. Eat junk food and then eat healthy food. Try and focus on you when you can, you will forget to because being at someones bed side will stop you doing that.

I don't know if I've said anything helpful. But I really do feel for you. I'm so so sorry you're going through this. My mother died 2 months ago today.
If you want to talk, on gchat or something, just while you're there, anything you need, me-mail me.
posted by shesbenevolent at 2:37 PM on May 3, 2016 [2 favorites]

I also want to say that I think mysterious_stranger is being pretty harsh and without being in someone's situation, you don't know how it really feels. You don't know how hard it is. You can't just 'suck it up'. I don't want you to read those words OP and feel guilt for how you feel. Do not feel guilty, do what you need to do.
posted by shesbenevolent at 2:45 PM on May 3, 2016 [1 favorite]

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