Caregiver burnout/major depression: in search of practical advice.
February 20, 2023 2:15 PM Subscribe
You people have helped me immensely in the past. Things have improved in some ways, but I'm still limping through the days. Struggling to access support with very little hands-on help.
I've noticed that the more I learn about my mind, the less isolated and hopeless I feel. Do you have recommendations for books or just ideas that maybe helped you in the past? Like hacks? I recently discovered Struggle Care, which is helpful, just not enough structure.
I'm on medical leave until April, and the time is slipping past in a daze of crying, TV, fatigue, guilt, and slogging through the most basic necessary tasks. I have a therapist who is helpful, but only for a few more weeks. I have a psychiatrist who is also very good, and he's trying me on different meds. So maybe he just needs to figure out the magic combo?
I'm yearning to make lists and plans to be sure I'm making this time count. I think that would give me a lot of hope. Like, if I could plan out the next five weeks, then I could truly relax. I feel constanly overwhelmed with the daily survival tasks, bills, decisions, family care, and part-time work. It's very difficult for me to keep doctors' and therapist's appointments and my day/night rhythm is reversed. I desperately need care, but other than some (much-appreciated) frozen meals and check-ins, my family and friends have not really been able to help much. To be fair, I have not told them exactly how bad things are, and I don't know what would even help. So, I'm asking
- what helped you?
- what book could tell me what might help?
Thank you...and I'm sorry for asking a somewhat similar question. It's just that it really, really gives me hope to hear from people who have been through this.
I'm on medical leave until April, and the time is slipping past in a daze of crying, TV, fatigue, guilt, and slogging through the most basic necessary tasks. I have a therapist who is helpful, but only for a few more weeks. I have a psychiatrist who is also very good, and he's trying me on different meds. So maybe he just needs to figure out the magic combo?
I'm yearning to make lists and plans to be sure I'm making this time count. I think that would give me a lot of hope. Like, if I could plan out the next five weeks, then I could truly relax. I feel constanly overwhelmed with the daily survival tasks, bills, decisions, family care, and part-time work. It's very difficult for me to keep doctors' and therapist's appointments and my day/night rhythm is reversed. I desperately need care, but other than some (much-appreciated) frozen meals and check-ins, my family and friends have not really been able to help much. To be fair, I have not told them exactly how bad things are, and I don't know what would even help. So, I'm asking
- what helped you?
- what book could tell me what might help?
Thank you...and I'm sorry for asking a somewhat similar question. It's just that it really, really gives me hope to hear from people who have been through this.
I use You Feel Like Shit regularly, it's an online questionaire that walks you through reasons you might feel crummy and some small, tractable things to do about it (eat something, shower, drink a glass of water, clean for five minutes).
It also sounds like you just need to give yourself a break for a bit, so I suggest Self-compassion exercises. Self compassion is a good search term for more things about treating yourself gently, if this is helpful. You are ill, the fact that you are crying a lot and don't feel like doing anything is part of your illness, beating yourself up about it isn't helping.
And do try to tell your friends and family a bit more. You should at least get someone to cover for your caregiving duties while you're struggling so hard, and for longer than you think. Like weeks, as a start. Put your own oxygen mask first!
posted by momus_window at 3:01 PM on February 20, 2023 [7 favorites]
It also sounds like you just need to give yourself a break for a bit, so I suggest Self-compassion exercises. Self compassion is a good search term for more things about treating yourself gently, if this is helpful. You are ill, the fact that you are crying a lot and don't feel like doing anything is part of your illness, beating yourself up about it isn't helping.
And do try to tell your friends and family a bit more. You should at least get someone to cover for your caregiving duties while you're struggling so hard, and for longer than you think. Like weeks, as a start. Put your own oxygen mask first!
posted by momus_window at 3:01 PM on February 20, 2023 [7 favorites]
Best answer: The thing that my burnout taught me is that you cannot life-hack your way out of burnout. This was a revolutionary realization, because, just like you are doing now, I kept trying to figure out how to organize/plan/hack my way out of exhaustion, which did not work.
If you want this time to "count", you have to use it to rest. You say you are on medical leave, but then you mention part-time work? Which is it? Are you actually on medical leave? If so, why are you also working?
Drop everything that you possibly can. This means telling your family that you are on medical leave for burnout/depression and will no longer be baking large cakes for uncles' birthdays until you are fully recovered. It also means evaluating whether time with friends actually makes you feel more energized (in which case, keep it in your schedule) or saps your energy (in which case, dial those plans way back until you actually start to recover).
Your only plan for the next five weeks should be eating, sleeping, and medically-necessary appointments.
posted by heatherlogan at 3:27 PM on February 20, 2023 [21 favorites]
If you want this time to "count", you have to use it to rest. You say you are on medical leave, but then you mention part-time work? Which is it? Are you actually on medical leave? If so, why are you also working?
Drop everything that you possibly can. This means telling your family that you are on medical leave for burnout/depression and will no longer be baking large cakes for uncles' birthdays until you are fully recovered. It also means evaluating whether time with friends actually makes you feel more energized (in which case, keep it in your schedule) or saps your energy (in which case, dial those plans way back until you actually start to recover).
Your only plan for the next five weeks should be eating, sleeping, and medically-necessary appointments.
posted by heatherlogan at 3:27 PM on February 20, 2023 [21 favorites]
I think it’s good that you want to make plans and think it will ultimately be beneficial to have a plan, but I caution against investing in too-high expectations about those plans and how they’ll enable All That You Seek. No one anywhere can predict exactly what’s going to happen over the next five weeks. The best planners and the best plan-executors know that something always changes, and because of that our plans need to be adaptable. The Buddhists might say: don’t be attached to the outcome. Remember that when something unexpected comes in, it doesn’t mean our plans were wrong or that we somehow failed. That’s just Life. I’m reminded of the poem The Guest House by Rumi. You are stronger than you might believe. You are capable and you can take what comes. You'll best be positioned to do this if you're getting enough rest. I feel this strongly because I have been where you are and I am there no longer.
Very much related to the above, I was recently reminded of something that’s true for me and I think believe it may be for many others: Procrastination is merely the avoidance of unpleasant emotions. Get comfortable with unpleasant emotions and the issue of procrastination takes care of itself. I write this because of times where I’ve had a tendency to create an enormous amount of extra anxiety and stress for myself by spending more energy in the planning and listing than in any doing. And it’s in the doing where we find out what’s really possible, what things really look like; where we find out what works.
I’m not suggesting you need to do more doing. I’m speaking to the idea that planning and list-making is so appealing but they can be misused, to the detriment of actually getting anything useful done. In your case, I’d hope your plans and lists make space for (a) the unexpected, and (b) rest. Because in order to go the distance you need to make time and space for rest on a regular basis.
Also, regarding your psychiatrist and meds: yes, it is so very often the case that tweaks and modifications need to be made in order to find the right combination or dosages. This can take time, for your body/mind to adjust and for you to be able to notice, understand and articulate to your Dr how the changes affect you. Make sure you are in frequent dialog with your Dr and don't be shy about telling her or him what's going on with you, even if it's messy, even if you're going through mood swings and might find yourself liable to downplay some things (guilt is a bastard like that).
Good on you for reaching out to ask for help. Keep doing that, here and elsewhere. Keep talking to people about what your experience is - especially people you don't know very well. You might be surprised at how something a stranger shares with you about their experience, can be monumentally valuable to yours.
posted by armoir from antproof case at 3:43 PM on February 20, 2023 [2 favorites]
Very much related to the above, I was recently reminded of something that’s true for me and I think believe it may be for many others: Procrastination is merely the avoidance of unpleasant emotions. Get comfortable with unpleasant emotions and the issue of procrastination takes care of itself. I write this because of times where I’ve had a tendency to create an enormous amount of extra anxiety and stress for myself by spending more energy in the planning and listing than in any doing. And it’s in the doing where we find out what’s really possible, what things really look like; where we find out what works.
I’m not suggesting you need to do more doing. I’m speaking to the idea that planning and list-making is so appealing but they can be misused, to the detriment of actually getting anything useful done. In your case, I’d hope your plans and lists make space for (a) the unexpected, and (b) rest. Because in order to go the distance you need to make time and space for rest on a regular basis.
Also, regarding your psychiatrist and meds: yes, it is so very often the case that tweaks and modifications need to be made in order to find the right combination or dosages. This can take time, for your body/mind to adjust and for you to be able to notice, understand and articulate to your Dr how the changes affect you. Make sure you are in frequent dialog with your Dr and don't be shy about telling her or him what's going on with you, even if it's messy, even if you're going through mood swings and might find yourself liable to downplay some things (guilt is a bastard like that).
Good on you for reaching out to ask for help. Keep doing that, here and elsewhere. Keep talking to people about what your experience is - especially people you don't know very well. You might be surprised at how something a stranger shares with you about their experience, can be monumentally valuable to yours.
posted by armoir from antproof case at 3:43 PM on February 20, 2023 [2 favorites]
Best answer: Let me describe some neurobiology-of-stress, since a basic knowledge of this stuff has been helpful for me.
Your biological reaction to stressors is controlled by the hypothalamic-pituitary-adrenal (HPA) axis. Basically, the bits of your brain (amygdala, etc.) that detect potential "danger" (quotes because in modern life this includes all sorts of normal work/caring related things) triggers some biological pathways that lead to the release of cortisol and adrenaline from your adrenal glands. These hormones do a whole bunch of different things in your body to free up resources so that you can focus on the "threat" and expend energy to address it, including releasing glucose into the bloodstream and temporarily down-regulating your energy-hungry immune system so that those resources can be used elsewhere. Cortisol also regulates your circadian sleep/wake cycle: under normal conditions, cortisol rises sharply within a half hour after waking and then declines throughout the day, with another rise in the late afternoon/early evening, and declining to a minimum overnight. And cortisol plays an important role in the regulation of your immune system by putting the brakes on the immune reaction when it's already "enough".
Prolonged stress, resulting in constant overproduction of cortisol, does two main things (as far as I have been able to discern; I'm not an endocrinologist): it provides a negative feedback to the HPA axis, which eventually flattens out the normal daily cycle of cortisol production (causing problems with circadian rhythm and disrupting sleep), and it causes other cells in your body (including immune system cells) to produce fewer cortisol receptors, so that they become less responsive cortisol production. The suppression of the immune-system sensitivity to cortisol (which normally is the "fine-control" on immune responses) makes you susceptible to immune over-reactions and overproduction of pro-inflammatory cytokines. There are a bunch of different cytokines that do different things, but the relevant effect here is that these cytokines are what make you "feel" sick and they cause the brain-and-body effects (actual biochemical stuff like reducing the energy conversion abilities of the cells themselves) that constitute fatigue. (One of the keywords associated with this is allostatic overload.) The gradual reduction of cortisol receptor expression also means that, as the burnout gets worse, it takes more and more "anxiety" to conjure up the energy/motivation/whatever required to maintain the 110% output that you've been using to address the stressors: everything becomes more and more difficult until you just can't do anything any more.
Recovering from burnout requires reducing stress enough that your cortisol levels go way down for a long enough period of time that your cortisol receptor gene-expression has time to return to normal. I do not know how long this takes, but it is probably months. Pushing yourself to be productive sets this process back because of biochemistry, and there's not really any way around it. When you're used to pushing yourself using anxiety as fuel, the idea of not being productive (or not making lists/plans/etc., or not making the time 'count') can feel really scary, because your brain has been trained to associate "not working right now" with an even bigger danger soon to come.
posted by heatherlogan at 4:52 PM on February 20, 2023 [20 favorites]
Your biological reaction to stressors is controlled by the hypothalamic-pituitary-adrenal (HPA) axis. Basically, the bits of your brain (amygdala, etc.) that detect potential "danger" (quotes because in modern life this includes all sorts of normal work/caring related things) triggers some biological pathways that lead to the release of cortisol and adrenaline from your adrenal glands. These hormones do a whole bunch of different things in your body to free up resources so that you can focus on the "threat" and expend energy to address it, including releasing glucose into the bloodstream and temporarily down-regulating your energy-hungry immune system so that those resources can be used elsewhere. Cortisol also regulates your circadian sleep/wake cycle: under normal conditions, cortisol rises sharply within a half hour after waking and then declines throughout the day, with another rise in the late afternoon/early evening, and declining to a minimum overnight. And cortisol plays an important role in the regulation of your immune system by putting the brakes on the immune reaction when it's already "enough".
Prolonged stress, resulting in constant overproduction of cortisol, does two main things (as far as I have been able to discern; I'm not an endocrinologist): it provides a negative feedback to the HPA axis, which eventually flattens out the normal daily cycle of cortisol production (causing problems with circadian rhythm and disrupting sleep), and it causes other cells in your body (including immune system cells) to produce fewer cortisol receptors, so that they become less responsive cortisol production. The suppression of the immune-system sensitivity to cortisol (which normally is the "fine-control" on immune responses) makes you susceptible to immune over-reactions and overproduction of pro-inflammatory cytokines. There are a bunch of different cytokines that do different things, but the relevant effect here is that these cytokines are what make you "feel" sick and they cause the brain-and-body effects (actual biochemical stuff like reducing the energy conversion abilities of the cells themselves) that constitute fatigue. (One of the keywords associated with this is allostatic overload.) The gradual reduction of cortisol receptor expression also means that, as the burnout gets worse, it takes more and more "anxiety" to conjure up the energy/motivation/whatever required to maintain the 110% output that you've been using to address the stressors: everything becomes more and more difficult until you just can't do anything any more.
Recovering from burnout requires reducing stress enough that your cortisol levels go way down for a long enough period of time that your cortisol receptor gene-expression has time to return to normal. I do not know how long this takes, but it is probably months. Pushing yourself to be productive sets this process back because of biochemistry, and there's not really any way around it. When you're used to pushing yourself using anxiety as fuel, the idea of not being productive (or not making lists/plans/etc., or not making the time 'count') can feel really scary, because your brain has been trained to associate "not working right now" with an even bigger danger soon to come.
posted by heatherlogan at 4:52 PM on February 20, 2023 [20 favorites]
It feels so embarrassing to ask, because I shouldn't need to, but for managing the fussy bits of bureaucracy that make up life, pick an organized friend who you think might have time and ask them to be there while you do some work. Body doubling.
I've done this in two ways. One, when I had to make a list of things to do but just making it felt too overwhelming, I got on a chat convo with my friend and asked if I could dump some stress on her. Then I just spit out all the big and little things. It did not feel as high-stakes as making a list (which required prioritizing and deciding what actually mattered). I just spit out what was stressing me. Then I had it all written down and look at that, the list was practically made.
And when I was dodging paperwork, I asked someone who really wanted to help but didn't know how to come over and sit with me while I do paperwork. She brought her computer and did some work, too, and it kept me on task for the (really not very long) that it took to fill out the stupid forms I needed to fill out.
Those are my practical tips, from someone who's been barely treading water for months now and is going to need to get a new roof and sell a house in the next six months. Much sympathy.
posted by gideonfrog at 5:09 PM on February 20, 2023
I've done this in two ways. One, when I had to make a list of things to do but just making it felt too overwhelming, I got on a chat convo with my friend and asked if I could dump some stress on her. Then I just spit out all the big and little things. It did not feel as high-stakes as making a list (which required prioritizing and deciding what actually mattered). I just spit out what was stressing me. Then I had it all written down and look at that, the list was practically made.
And when I was dodging paperwork, I asked someone who really wanted to help but didn't know how to come over and sit with me while I do paperwork. She brought her computer and did some work, too, and it kept me on task for the (really not very long) that it took to fill out the stupid forms I needed to fill out.
Those are my practical tips, from someone who's been barely treading water for months now and is going to need to get a new roof and sell a house in the next six months. Much sympathy.
posted by gideonfrog at 5:09 PM on February 20, 2023
I always imagine during burn out periods that I'll do something productive with my recovery time.
Spoiler - I don't. I sleep and watch a backlog of fun tv and mess around. Walking the dog is helpful, as is trying to eat yummy meals, but nothing more. I just finished a job where for the first time I do not have burn out, and I am busy doing a bunch of things! without wanting to lie down and cry/sleep!
You need to rest without any guilt. If you must, find a soothing video game like Stardew Valley for the illusion of progress.
posted by dorothyisunderwood at 9:39 PM on February 20, 2023 [1 favorite]
Spoiler - I don't. I sleep and watch a backlog of fun tv and mess around. Walking the dog is helpful, as is trying to eat yummy meals, but nothing more. I just finished a job where for the first time I do not have burn out, and I am busy doing a bunch of things! without wanting to lie down and cry/sleep!
You need to rest without any guilt. If you must, find a soothing video game like Stardew Valley for the illusion of progress.
posted by dorothyisunderwood at 9:39 PM on February 20, 2023 [1 favorite]
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If you’re on leave as a caregiver, it probably makes sense to build more structure into your days, but I say this only because when you do that, you allow yourself more scope for rest. It can be very draining work.
If you’re on leave specifically for your own mental health, on the other hand, I think I need to hear more about what it is you’d like this time to count “for.” I don’t think mental health leave should be treated like a book leave or a sabbatical after which you expect to have some concrete accomplishment in hand. As you note, keeping track of appointments and managing basic life tasks is more than enough when you’re struggling.
In terms of practical suggestions, would it help to build some social contact into your chores, by inviting a good friend to come keep you company while you do laundry or something similar? They need to be a close enough friend not to expect you to entertain them under the circumstances. At the end of an hour or two, you will have made a little progress and gotten a little comfort.
posted by eirias at 2:57 PM on February 20, 2023