How to keep going, because that's the only option
August 19, 2022 6:12 AM Subscribe
One of my elderly parents have been recently diagnosed with a terminal illness. Fortunately they are not in pain, in decent spirits, and the palliative care they're receiving seems to be
helping. As to how much time they have, it's probably a year. Maybe less. There is a lot going on and trying to keep it together has been hard. Seeking some inputs on how to cope.
I've broken it down into parts and I am turning to the hivemind to help me deal with them in a more structured way, because my current (non) strategy of coping is no longer cutting it. Details below the fold.
The family stuff -
The diagnosis itself came out of nowhere and blindsided all of us (other parent, 2 elder siblings, all fairly close). It so transpired that my parents were in the same city as I am when this started off, and thus the bulk of the caregiving fell to me - both the scheduling and assurance aspects (the moment of breaking the news to my parents makes the top ten of crappy things I've had to do in my entire life). My siblings made flying visits and returned to their respective cities with no clear cut plans of sharing responsibilities. Indeed, one sibling has refused to engage with the seriousness of the diagnosis because it 'worries and upsets them'. And since my parent seems reasonably okay on the surface and they weren't around for the hard bits, I can almost sympathize with the feeling of not wanting to delve into the sad stuff.
Except it means that I alone have to deal with it. And the slow drip nature of this illness means I get to live with the 'they're going to die soon, we just don't know when' in my head. It's hard. I've been the first point of reference for all the reports, all the (increasingly grim) doctor's visits, and the endless reading material. I've made a conscious choice to not pass on the worst of the implications to my other parent to protect their health, but my siblings' behaviour took me by surprise. I am working with the assumption that I can't change it, but how can I manage my own emotional equilibrium?
(and this is where I am not even getting into my lifelong anxiety and setting of insanely high expectations and significant amounts of emotional codependence and caretaking required by both parents from when I was very very young, which have led to several unfortunate decisions and events in my life; now I get to pull a tarp over all of that and focus on taking care of them. Well, continue to take care of them. I can't opt out. I'm South Asian. This is what we do.)
The non-family stuff-
I have a few close friends. Some of them have been magnificent post-diagnosis. My best friend (someone I've asked about previously) blew hot and cold, but currently is back to previous level of comfort (but thanks to circumstances, I'm afraid to lean too hard on). At least one friend has withdrawn significantly, and another has behaved as though nothing has changed and been fretty and complaining about my not giving enough time to them (!). Another friend abruptly stopped talking to me within this period, when I advocated for trans rights/visibility in a fairly casual conversation (not mourning losing a transphobic 'friend' but it came as a jolt nonetheless). Similarly, someone I'd started dating a few weeks before it all started also ghosted me once they heard that the news would be bad and continue to get worse. Perhaps people just don't know what to do with news like this? I don't know. These surprises on top of what was already a hard couple of months made me feel like I am not 'allowed' to be a friend who needs to be supported occasionally (I like to think I am a decent friend and have tried to be there for difficult moments in others' lives). I am also someone who uses humour as a coping mechanism pretty constantly. There's a lot to cope with right now. I fear maybe I've made people feel, since I'm working full-time and being normal and pleasant and funny, everything is fine. It's not. It's costing me effort to maintain status quo - and I'm doing it because I am afraid that the second I let go a little I'll let go entirely. And that's not a luxury I currently have. Is there a reasonable medium between being as normal as possible while having recognition that things are not really normal?
Additionally, I'm a fairly chatty person with a lot of casual communication with friends. I don't know what to say when they ask what is up with me, or how come I'm not traveling lately, and why I'm quieter. I don't really feel like getting into it with everyone, but saying everything is okay is also a lie. What should I say?
Work/financial stuff-
I've had to take a significant amount of time off to deal with the medical stuff. I shared with my team and my superiors once we knew exactly what we were dealing with. My workplace has been...variable about the support (which includes insurance benefits I qualify for for, that they're making me jump through hoops for). My superiors said I can ask for help as and when I need it, but promptly distanced themselves when the insurance hassles happened (I am not in the US, so I'm not looking for practical help), making vaguely helpful noises with no concrete help or suggestions to navigate the system. I fear I may have normalized the situation a bit too well here as well, and everyone thinks this is a minor hiccup rather than a life altering thing I'm dealing with.
Because of the situation, I've been covering every expense out of pocket. Again, no help from siblings, and parents can't afford it. It has been interesting watching my savings burn at a never-before-seen pace.
I think, summing up, is that all the support system I thought I could count on in a situation like this (family, friends, work where I've been for over half a decade as a valued and appreciated employee) have been found wanting in some way or another. And being the situation it is, I have to stay strong/calm/practical/be able to take care of admin tasks. I also really don't want to put my entire life on hold, since there's no defined end point to this (except the obvious horrible one I suppose). I want to be able to maintain a semblance of routine. I want to be able to find time for things I like doing. I want to keep trying to find a romantic supportive relationship. I actually...also want time and space to grieve. And reminisce with my parent. Document their stories and memories and find a way to carry them with me to a time when they won't be around. I don't want to give up on everything, and yet I want to make peace with the fact that, fair or not, I have to deal with the other stuff as well. Everytime I try to think about how to make all of this happen together, my brain short-circuits and I find myself anxious and unmoored and overwhelmed.
I am in therapy. My therapist has been really great for my anxiety, but will say things like 'take everything one day at a time' which for some reason I find intensely irritating. Equally irritating is her validating that I shouldn't have to handle everything alone (should is a useless word. It is what it is, I just have to find a way to cope.) Yet finding someone else is more than I have spoons for, right now.
Apologies for inflicting this word salad, but any and all inputs would be gratefully received.
I've broken it down into parts and I am turning to the hivemind to help me deal with them in a more structured way, because my current (non) strategy of coping is no longer cutting it. Details below the fold.
The family stuff -
The diagnosis itself came out of nowhere and blindsided all of us (other parent, 2 elder siblings, all fairly close). It so transpired that my parents were in the same city as I am when this started off, and thus the bulk of the caregiving fell to me - both the scheduling and assurance aspects (the moment of breaking the news to my parents makes the top ten of crappy things I've had to do in my entire life). My siblings made flying visits and returned to their respective cities with no clear cut plans of sharing responsibilities. Indeed, one sibling has refused to engage with the seriousness of the diagnosis because it 'worries and upsets them'. And since my parent seems reasonably okay on the surface and they weren't around for the hard bits, I can almost sympathize with the feeling of not wanting to delve into the sad stuff.
Except it means that I alone have to deal with it. And the slow drip nature of this illness means I get to live with the 'they're going to die soon, we just don't know when' in my head. It's hard. I've been the first point of reference for all the reports, all the (increasingly grim) doctor's visits, and the endless reading material. I've made a conscious choice to not pass on the worst of the implications to my other parent to protect their health, but my siblings' behaviour took me by surprise. I am working with the assumption that I can't change it, but how can I manage my own emotional equilibrium?
(and this is where I am not even getting into my lifelong anxiety and setting of insanely high expectations and significant amounts of emotional codependence and caretaking required by both parents from when I was very very young, which have led to several unfortunate decisions and events in my life; now I get to pull a tarp over all of that and focus on taking care of them. Well, continue to take care of them. I can't opt out. I'm South Asian. This is what we do.)
The non-family stuff-
I have a few close friends. Some of them have been magnificent post-diagnosis. My best friend (someone I've asked about previously) blew hot and cold, but currently is back to previous level of comfort (but thanks to circumstances, I'm afraid to lean too hard on). At least one friend has withdrawn significantly, and another has behaved as though nothing has changed and been fretty and complaining about my not giving enough time to them (!). Another friend abruptly stopped talking to me within this period, when I advocated for trans rights/visibility in a fairly casual conversation (not mourning losing a transphobic 'friend' but it came as a jolt nonetheless). Similarly, someone I'd started dating a few weeks before it all started also ghosted me once they heard that the news would be bad and continue to get worse. Perhaps people just don't know what to do with news like this? I don't know. These surprises on top of what was already a hard couple of months made me feel like I am not 'allowed' to be a friend who needs to be supported occasionally (I like to think I am a decent friend and have tried to be there for difficult moments in others' lives). I am also someone who uses humour as a coping mechanism pretty constantly. There's a lot to cope with right now. I fear maybe I've made people feel, since I'm working full-time and being normal and pleasant and funny, everything is fine. It's not. It's costing me effort to maintain status quo - and I'm doing it because I am afraid that the second I let go a little I'll let go entirely. And that's not a luxury I currently have. Is there a reasonable medium between being as normal as possible while having recognition that things are not really normal?
Additionally, I'm a fairly chatty person with a lot of casual communication with friends. I don't know what to say when they ask what is up with me, or how come I'm not traveling lately, and why I'm quieter. I don't really feel like getting into it with everyone, but saying everything is okay is also a lie. What should I say?
Work/financial stuff-
I've had to take a significant amount of time off to deal with the medical stuff. I shared with my team and my superiors once we knew exactly what we were dealing with. My workplace has been...variable about the support (which includes insurance benefits I qualify for for, that they're making me jump through hoops for). My superiors said I can ask for help as and when I need it, but promptly distanced themselves when the insurance hassles happened (I am not in the US, so I'm not looking for practical help), making vaguely helpful noises with no concrete help or suggestions to navigate the system. I fear I may have normalized the situation a bit too well here as well, and everyone thinks this is a minor hiccup rather than a life altering thing I'm dealing with.
Because of the situation, I've been covering every expense out of pocket. Again, no help from siblings, and parents can't afford it. It has been interesting watching my savings burn at a never-before-seen pace.
I think, summing up, is that all the support system I thought I could count on in a situation like this (family, friends, work where I've been for over half a decade as a valued and appreciated employee) have been found wanting in some way or another. And being the situation it is, I have to stay strong/calm/practical/be able to take care of admin tasks. I also really don't want to put my entire life on hold, since there's no defined end point to this (except the obvious horrible one I suppose). I want to be able to maintain a semblance of routine. I want to be able to find time for things I like doing. I want to keep trying to find a romantic supportive relationship. I actually...also want time and space to grieve. And reminisce with my parent. Document their stories and memories and find a way to carry them with me to a time when they won't be around. I don't want to give up on everything, and yet I want to make peace with the fact that, fair or not, I have to deal with the other stuff as well. Everytime I try to think about how to make all of this happen together, my brain short-circuits and I find myself anxious and unmoored and overwhelmed.
I am in therapy. My therapist has been really great for my anxiety, but will say things like 'take everything one day at a time' which for some reason I find intensely irritating. Equally irritating is her validating that I shouldn't have to handle everything alone (should is a useless word. It is what it is, I just have to find a way to cope.) Yet finding someone else is more than I have spoons for, right now.
Apologies for inflicting this word salad, but any and all inputs would be gratefully received.
Nieshka, this sounds unbelievably difficult. I’m so sorry you and your family are going through this. I’m glad you’re in therapy, and glad you are reaching out to friends for support. I would suggest in addition that you pay attention to your physical and emotional needs. Schedule a massage. Set aside time daily to get physically active. Think about ways you would like to be cared about by someone else (flowers delivered? Cookies?) and do them for yourself. Treat yourself tenderly.
Specific thoughts:
Siblings: Ultimately it is up to them to what degree they choose to be involved. With kindness, it is ok for them not to want to read the details of the diagnosis or get into the weeds there. I think, protecting Nieshka, I would suggest you limit the amount you’re diving into the details too unless it is specifically relevant to getting your parent palliative care. Sometimes for long distance sibs it can be difficult to know what, specifically, they can do to help. I would think about sending a non-judge mental, non angry email (think about how you would write it if you were a third party) and offer some specific examples of ways they could tangibly help you. Something like:
Sibs, Over the last couple of months I’ve spent approximately $ out of pocket to assist with#parent care and had to take X days off work. This is my choice, absolutely, but is taking a pretty considerable toll on me. I know it can often be difficult to know what and how you can support from a distance, and I had a few ideas of possibilities if any of them resonate with you:
-Hire a skilled advocate to accompany parents on some appointments
-Pay for a weekly cleaning service for the house
-Pay for a meal delivery service to the house
-Call our parents on a scheduled 2x per week time frame
-Take on a portion of our parents’ medical bills which are not presently covered by insurance, either a percentage of them or just a lump sum. Right now I’m paying them out of pocket.
-Come out for a scheduled week in advance, allowing me to take a week “off”
-Send me a SMS every day. Doesn’t have to be complicated, just a text letting me know you’re thinking of me.
If any of these resonate with you as a way you could be involved and support our parents and me in this very difficult time, I would be very grateful. If you have other ideas of how we can cope during this awful time I would also be grateful. Love, Nieshka
posted by arnicae at 6:36 AM on August 19, 2022 [13 favorites]
Specific thoughts:
Siblings: Ultimately it is up to them to what degree they choose to be involved. With kindness, it is ok for them not to want to read the details of the diagnosis or get into the weeds there. I think, protecting Nieshka, I would suggest you limit the amount you’re diving into the details too unless it is specifically relevant to getting your parent palliative care. Sometimes for long distance sibs it can be difficult to know what, specifically, they can do to help. I would think about sending a non-judge mental, non angry email (think about how you would write it if you were a third party) and offer some specific examples of ways they could tangibly help you. Something like:
Sibs, Over the last couple of months I’ve spent approximately $ out of pocket to assist with#parent care and had to take X days off work. This is my choice, absolutely, but is taking a pretty considerable toll on me. I know it can often be difficult to know what and how you can support from a distance, and I had a few ideas of possibilities if any of them resonate with you:
-Hire a skilled advocate to accompany parents on some appointments
-Pay for a weekly cleaning service for the house
-Pay for a meal delivery service to the house
-Call our parents on a scheduled 2x per week time frame
-Take on a portion of our parents’ medical bills which are not presently covered by insurance, either a percentage of them or just a lump sum. Right now I’m paying them out of pocket.
-Come out for a scheduled week in advance, allowing me to take a week “off”
-Send me a SMS every day. Doesn’t have to be complicated, just a text letting me know you’re thinking of me.
If any of these resonate with you as a way you could be involved and support our parents and me in this very difficult time, I would be very grateful. If you have other ideas of how we can cope during this awful time I would also be grateful. Love, Nieshka
posted by arnicae at 6:36 AM on August 19, 2022 [13 favorites]
Does your country have any kind of formalized status protecting your job while you go through this? I recently went through this very situation and was on formal part-time family leave to give me the space to do what needed to be done. I would look into protections for your employment if you have not yet.
I chose to be very frank with everyone throughout. I needed them to know that I was coping with something very difficult so that they would have context for why I was: reluctant to make social plans or take on responsibility for organizing things, cancelling work meetings at the last minute, frequently turning on out of office auto replies, remaining much more cautious around COVID than everyone else I knew, etc. It sounds like you’ve been playing this closer to your chest, and I want to say that that choice is up to you, but if you are more able to disclose, you might find that that activates the caretaking bit of the people around you (at least the ones who have that instinct in the first place — many people will have no idea how to help, and might avoid you as a result — that’s people for you).
I’m an only child, so I don’t have experience navigating sibling issues, but I will say that it would also be very legitimate for you to say: I am not asking for your help, I am telling you that this is too much for one person and I need you to do [specific thing]. It sounds like in your culture there is significant expectation of family loyalty and you have this internet stranger’s encouragement to milk that baby for all it’s worth.
Is your surviving parent set up for what they will need when your ill parent is gone? I don’t know about your parent, but that’s something my dad was really worried about before he passed. It would be a kindness to both of them to make sure any bureaucratic or safety stuff that is needed is in place.
Finally, this just plain sucks and is difficult, and I hear you. Wishing you and your family peace.
posted by eirias at 6:41 AM on August 19, 2022 [3 favorites]
I chose to be very frank with everyone throughout. I needed them to know that I was coping with something very difficult so that they would have context for why I was: reluctant to make social plans or take on responsibility for organizing things, cancelling work meetings at the last minute, frequently turning on out of office auto replies, remaining much more cautious around COVID than everyone else I knew, etc. It sounds like you’ve been playing this closer to your chest, and I want to say that that choice is up to you, but if you are more able to disclose, you might find that that activates the caretaking bit of the people around you (at least the ones who have that instinct in the first place — many people will have no idea how to help, and might avoid you as a result — that’s people for you).
I’m an only child, so I don’t have experience navigating sibling issues, but I will say that it would also be very legitimate for you to say: I am not asking for your help, I am telling you that this is too much for one person and I need you to do [specific thing]. It sounds like in your culture there is significant expectation of family loyalty and you have this internet stranger’s encouragement to milk that baby for all it’s worth.
Is your surviving parent set up for what they will need when your ill parent is gone? I don’t know about your parent, but that’s something my dad was really worried about before he passed. It would be a kindness to both of them to make sure any bureaucratic or safety stuff that is needed is in place.
Finally, this just plain sucks and is difficult, and I hear you. Wishing you and your family peace.
posted by eirias at 6:41 AM on August 19, 2022 [3 favorites]
Friends:
Friends, too, have no idea what to say when difficult stuff is going on (often). Been there. I had a close family member die and really struggled with how to respond to “I’m so sorry” (thanks) and “how are you doing?” (Poorly). I suggest again giving them a script for support, if they are close enough friends. For less close friends, I would do something like say “Friend, it has been a really stressful few months - one of my parents has a serious medical issue which has been emotionally and financially devastating.”
Then ask them for something small that they can actually do or provide. In my world it might be something like:
*when you remember, send me something that makes you smile or laugh
*Could we have coffee once per X? (And schedule it)
*I’d love a walking buddy - with everything happening I haven’t been active at all and could use a motivation. could we walk together every Saturday morning?
To the degree you’re able, try to forgive them if they are not enough. (Supportive enough, interactive enough, etc) We very, very rarely know how to act or what to say during emotionally challenging situations like this and as a result many of us do it poorly.
posted by arnicae at 6:43 AM on August 19, 2022 [2 favorites]
Friends, too, have no idea what to say when difficult stuff is going on (often). Been there. I had a close family member die and really struggled with how to respond to “I’m so sorry” (thanks) and “how are you doing?” (Poorly). I suggest again giving them a script for support, if they are close enough friends. For less close friends, I would do something like say “Friend, it has been a really stressful few months - one of my parents has a serious medical issue which has been emotionally and financially devastating.”
Then ask them for something small that they can actually do or provide. In my world it might be something like:
*when you remember, send me something that makes you smile or laugh
*Could we have coffee once per X? (And schedule it)
*I’d love a walking buddy - with everything happening I haven’t been active at all and could use a motivation. could we walk together every Saturday morning?
To the degree you’re able, try to forgive them if they are not enough. (Supportive enough, interactive enough, etc) We very, very rarely know how to act or what to say during emotionally challenging situations like this and as a result many of us do it poorly.
posted by arnicae at 6:43 AM on August 19, 2022 [2 favorites]
eirias has more eloquently contributed almost everything I had to say. Transparency about everything is the way I also “handled” it, because it was easier just to give people a taste of the ongoing maelstrom than spend extra effort distilling it for them into a neat narrative. Work took a hit and it was, mercifully, accepted.
Friends don’t know what to do; they can’t change it, and they can’t cheer you up. If anyone asks what they can do, it may help to ask them to do all the friendship work: “The most valuable thing you can do is continue to be my friend even though I can’t reciprocate right now, and pursue me if necessary.”
I am so, so sorry. It’s been hard already and it will remain hard. You will have all sorts of horrible and shocking emotions, and none of them are “wrong”. Keep going. All you can do, like any of us, is your best.
posted by breakfast burrito at 7:00 AM on August 19, 2022 [3 favorites]
Friends don’t know what to do; they can’t change it, and they can’t cheer you up. If anyone asks what they can do, it may help to ask them to do all the friendship work: “The most valuable thing you can do is continue to be my friend even though I can’t reciprocate right now, and pursue me if necessary.”
I am so, so sorry. It’s been hard already and it will remain hard. You will have all sorts of horrible and shocking emotions, and none of them are “wrong”. Keep going. All you can do, like any of us, is your best.
posted by breakfast burrito at 7:00 AM on August 19, 2022 [3 favorites]
Response by poster: Threadsitting only this once -
One of the few friends I actually was frank with made the comment about my not making time for hanging out (quick, want to guess the gender of the person making this demand?). I'm aware friends can't do much (hell, not even far away family can) and I absolutely don't expect them to carry the admin load, but it is astonishing to me, considering we are all in our thirties and would have to start dealing with losses in the family sooner or later, that it's too much to expect that they at least don't expect me to do emotional labour on their behalf now.
And what it did do was scare me off being more open with other people. I wasn't sure I would be able to remain calm through more such interactions.
Many thanks for the answers so far. They've been very helpful.
posted by Nieshka at 7:12 AM on August 19, 2022 [4 favorites]
One of the few friends I actually was frank with made the comment about my not making time for hanging out (quick, want to guess the gender of the person making this demand?). I'm aware friends can't do much (hell, not even far away family can) and I absolutely don't expect them to carry the admin load, but it is astonishing to me, considering we are all in our thirties and would have to start dealing with losses in the family sooner or later, that it's too much to expect that they at least don't expect me to do emotional labour on their behalf now.
And what it did do was scare me off being more open with other people. I wasn't sure I would be able to remain calm through more such interactions.
Many thanks for the answers so far. They've been very helpful.
posted by Nieshka at 7:12 AM on August 19, 2022 [4 favorites]
I'm sorry you are going through this, and that your siblings aren't stepping up.
Caregiver burden/burnout is real, and can be hard to recover from (physiologically speaking) so steps to prevent it would be helpful. Caregiving is emotional and practical/administrative. I agree with a group communication to siblings to state this is too much for you. Make a list of either concrete tasks that they need to handle, or roles that you need them to take. Can someone be the appointment scheduler, the person that handles financial stuff, the one that keeps others informed of what's going on, etc?
I also agree with being more explicit with people. That may cause some to distance more but others may take your needs more seriously.
posted by crunchy potato at 7:12 AM on August 19, 2022 [2 favorites]
Caregiver burden/burnout is real, and can be hard to recover from (physiologically speaking) so steps to prevent it would be helpful. Caregiving is emotional and practical/administrative. I agree with a group communication to siblings to state this is too much for you. Make a list of either concrete tasks that they need to handle, or roles that you need them to take. Can someone be the appointment scheduler, the person that handles financial stuff, the one that keeps others informed of what's going on, etc?
I also agree with being more explicit with people. That may cause some to distance more but others may take your needs more seriously.
posted by crunchy potato at 7:12 AM on August 19, 2022 [2 favorites]
The friend that commented about you not making time for hanging out - does that mean "I expect you to plan, initiate and execute social plans with me AFTER hearing your parent has a terminal illness."
Or does that mean, "I want to be there for you and don't know how so I wish we would at least have plans to spend time together, so that I can give you my time/presence in case you need to talk about this stuff"?
posted by crunchy potato at 7:37 AM on August 19, 2022 [2 favorites]
Or does that mean, "I want to be there for you and don't know how so I wish we would at least have plans to spend time together, so that I can give you my time/presence in case you need to talk about this stuff"?
posted by crunchy potato at 7:37 AM on August 19, 2022 [2 favorites]
My parent died of a terminal illness some years ago. It is ABSOLUTELY the case that several people old enough to know better were in fact dumb as shit in figuring out what would be an appropriate response, including one lady who had a kind of mini crisis over it and called my other parent to unload all her thoughts and feelings.
This is a shitty thing about being among the first in your cohort to lose a parent.
It turned out that I did have friends who could manage to behave in a way I found helpful, it was just a matter of figuring out which ones they were. People who have themselves lost a family member (not yesterday obviously!) seem to be a good bet.
posted by quacks like a duck at 9:08 AM on August 19, 2022 [1 favorite]
This is a shitty thing about being among the first in your cohort to lose a parent.
It turned out that I did have friends who could manage to behave in a way I found helpful, it was just a matter of figuring out which ones they were. People who have themselves lost a family member (not yesterday obviously!) seem to be a good bet.
posted by quacks like a duck at 9:08 AM on August 19, 2022 [1 favorite]
Lots of good advice above, my experience of having lost two parents (one quickly from complications of cancer and one slowly from dementia) is that you will find support from unexpected people and lack of support from people you thought you could rely on--but it pays to be as open about what is going on as possible. I was the primary caregiver in each case, and am very grateful to my Dad who passed first and quickly for having in place a will, a trust, long term care insurance, etc. and who had shared all financial information and passwords, etc. with my Mom so we could transition to taking care of all that relatively easily.
Be sure that all financial information and passwords are accessible to you. If there isn't a will, etc. make sure you get those in place. Because I was handling all the day-to-day stuff, my brother and I had an informal agreement that I could take what I needed in funds to make life easier--you may need to formalize that with your siblings. Also it sounds like there isn't a big estate to worry about, so this may be moot. BUT, the least your sibs can do is pitch in a fair share financially, especially if they can't be there to share the caregiving. Be sure you have a Power of Attorney (or your local equivalent) and that you have discussed end-of-life decisions with the patient so you and the remaining spouse and family are clear on what they want done. These are hard conversations to have but will make things less stressful.
This is going to be a hard, emotional, exhausting time. Let people help you to the extent they are able. I hate asking for help, but when I did, I was so glad for it.
Take care of the basics for yourself; eat well, drink water, move your body each day and get enough sleep when possible.
posted by agatha_magatha at 9:24 AM on August 19, 2022 [1 favorite]
Be sure that all financial information and passwords are accessible to you. If there isn't a will, etc. make sure you get those in place. Because I was handling all the day-to-day stuff, my brother and I had an informal agreement that I could take what I needed in funds to make life easier--you may need to formalize that with your siblings. Also it sounds like there isn't a big estate to worry about, so this may be moot. BUT, the least your sibs can do is pitch in a fair share financially, especially if they can't be there to share the caregiving. Be sure you have a Power of Attorney (or your local equivalent) and that you have discussed end-of-life decisions with the patient so you and the remaining spouse and family are clear on what they want done. These are hard conversations to have but will make things less stressful.
This is going to be a hard, emotional, exhausting time. Let people help you to the extent they are able. I hate asking for help, but when I did, I was so glad for it.
Take care of the basics for yourself; eat well, drink water, move your body each day and get enough sleep when possible.
posted by agatha_magatha at 9:24 AM on August 19, 2022 [1 favorite]
Oh, I am so, so sorry to hear this.
I've been EXACTLY where you are. Right down to the family members and friends suddenly not knowing what to say or ghosting you or being crap and unhelpful.
I'm currently in the middle of managing another family health crisis so I feel extra empathetic towards you right now. However it is a bit different from yours.
I'm going to talk a little, instead, about my parent's terminal illness which happened a few years ago. I was the main person to manage that process. This is what helped me - feel free to discard if not helpful.
- Being COMPLETELY upfront with friends about what a shit time I'm having. Some people didn't know what to say, fine, chalk that one down as a learning experience. But I was also surprised by the unexpected moments of grace, empathy and understanding that came about as a result of being extremely honest with everyone. I'm usually the kind of person who worries about other people's feelings and doesn't want to make them feel uncomfortable. But I feel like difficult times like this are when you cash in your friendship cheques. Now's the time you get to demand a bit more of other people's space and care. Some people won't give it to you, but until you ask for it, you won't know who the people are who WILL give it to you. (oh, on preview: pretty much what agatha_magatha said!)
- I found that the rest of my family basically did not know what was needed. They could not proactively support me. So I really spelled it out for them. 'I need you to drive me to the hospital at 9am on Monday.' 'I need you to call so-and-so and tell them such-and-such.' Yes, it was extra work for me, but it was better than them either withdrawing or running around like headless chickens.
- I had some access to paid help. I took full advantage of this. My parent had a caregiver who took care of toileting, washing, helping from room to room, administering medications. If I could be confident my parent had their physical safety needs covered, I could take a few hours for myself everyday. I would use this for exercise, creating art, or just sleeping. It was very important to maintain my emotional equilibrium.
- You know the thing your therapist said about taking it a day at a time? My parent's illness was the first time I actually DID that. Like... before I went to bed at night I would think, 'ok, I made it through today and all I have to do is make it through tomorrow. I refuse to think about what will happen after that.' This was a thought exercise I find it hard to return to, but at the time, it was helpful.
Good luck. I am rooting for you.
posted by unicorn chaser at 9:43 AM on August 19, 2022 [1 favorite]
I've been EXACTLY where you are. Right down to the family members and friends suddenly not knowing what to say or ghosting you or being crap and unhelpful.
I'm currently in the middle of managing another family health crisis so I feel extra empathetic towards you right now. However it is a bit different from yours.
I'm going to talk a little, instead, about my parent's terminal illness which happened a few years ago. I was the main person to manage that process. This is what helped me - feel free to discard if not helpful.
- Being COMPLETELY upfront with friends about what a shit time I'm having. Some people didn't know what to say, fine, chalk that one down as a learning experience. But I was also surprised by the unexpected moments of grace, empathy and understanding that came about as a result of being extremely honest with everyone. I'm usually the kind of person who worries about other people's feelings and doesn't want to make them feel uncomfortable. But I feel like difficult times like this are when you cash in your friendship cheques. Now's the time you get to demand a bit more of other people's space and care. Some people won't give it to you, but until you ask for it, you won't know who the people are who WILL give it to you. (oh, on preview: pretty much what agatha_magatha said!)
- I found that the rest of my family basically did not know what was needed. They could not proactively support me. So I really spelled it out for them. 'I need you to drive me to the hospital at 9am on Monday.' 'I need you to call so-and-so and tell them such-and-such.' Yes, it was extra work for me, but it was better than them either withdrawing or running around like headless chickens.
- I had some access to paid help. I took full advantage of this. My parent had a caregiver who took care of toileting, washing, helping from room to room, administering medications. If I could be confident my parent had their physical safety needs covered, I could take a few hours for myself everyday. I would use this for exercise, creating art, or just sleeping. It was very important to maintain my emotional equilibrium.
- You know the thing your therapist said about taking it a day at a time? My parent's illness was the first time I actually DID that. Like... before I went to bed at night I would think, 'ok, I made it through today and all I have to do is make it through tomorrow. I refuse to think about what will happen after that.' This was a thought exercise I find it hard to return to, but at the time, it was helpful.
Good luck. I am rooting for you.
posted by unicorn chaser at 9:43 AM on August 19, 2022 [1 favorite]
Sorry for the double post. Just thought of a couple more things:
- Have the difficult, end-of-life decisions discussion sooner rather than later.
- Another point about emotional equilibrium. Find something you and your parent can both enjoy together. Prioritise it. My parent and I got super into the A Song of Ice and Fire books (and the Game of Thrones TV series) in their last 6 months of life. I always remember that thing we were able to enjoy together, very fondly. I recommend if there's something you and your parent both enjoy, make the most of it... It will give you a lot of solace if the only thing you're not thinking and talking about when you're together is medical stuff.
posted by unicorn chaser at 9:49 AM on August 19, 2022 [4 favorites]
- Have the difficult, end-of-life decisions discussion sooner rather than later.
- Another point about emotional equilibrium. Find something you and your parent can both enjoy together. Prioritise it. My parent and I got super into the A Song of Ice and Fire books (and the Game of Thrones TV series) in their last 6 months of life. I always remember that thing we were able to enjoy together, very fondly. I recommend if there's something you and your parent both enjoy, make the most of it... It will give you a lot of solace if the only thing you're not thinking and talking about when you're together is medical stuff.
posted by unicorn chaser at 9:49 AM on August 19, 2022 [4 favorites]
As quacks like a duck said above, you never know who will step up to offer real help, and the people you assume will do so might not come through, for their own reasons including fear of death, fear of getting emotionally involved and then suffering pain when the person dies, who knows all the barriers people struggle with when faced with such a difficult situation? Plus people have very busy lives and lots of responsibilities, and it's pretty easy to tell yourself you just don't have the time.
Therefore, I agree that if someone says "please let me know if I can help in any way" that you have suggestions you can offer immediately, something concrete like "can you make a few frozen meals or pick up a prescription when I need one? Can you take my other parent out for coffee or lunch one day next week?" People will look at their calendars and try to fit you in, since it's a one-time task and is not an open-ended commitment. Sometimes communities such as churches are a great resource of volunteer assistance if that's a possibility.
I am currently driving the father of an old friend to and from a facility that is caring for his wife of 65 years. They are in their 90s, and she was just diagnosed with terminal cancer. I've known them for decades, but not well, always as a friend of their daughter. Their 2 children are not local and have their own health problems, but I am in the same city and live nearby their parents. Neighbors have been dropping off meals and the occasional floral arrangement, but most of their neighbors are elderly, too. What they really needed was reliable transportation to and from the hospital or nursing facility in a car the dad doesn't have to climb into, like a big SUV, and my car is a smallish sedan with a low threshold. Uber had been difficult because of the different car models and he felt rushed to get himself out the door before the deadline when the driver would cancel and drive away. So I've been able to accommodate his schedule for the most part, and I know he appreciates it. Plus I have a chance to check in with him every trip and hopefully offer an opportunity for him to decompress and share how he's feeling.
posted by citygirl at 11:35 AM on August 19, 2022 [2 favorites]
Therefore, I agree that if someone says "please let me know if I can help in any way" that you have suggestions you can offer immediately, something concrete like "can you make a few frozen meals or pick up a prescription when I need one? Can you take my other parent out for coffee or lunch one day next week?" People will look at their calendars and try to fit you in, since it's a one-time task and is not an open-ended commitment. Sometimes communities such as churches are a great resource of volunteer assistance if that's a possibility.
I am currently driving the father of an old friend to and from a facility that is caring for his wife of 65 years. They are in their 90s, and she was just diagnosed with terminal cancer. I've known them for decades, but not well, always as a friend of their daughter. Their 2 children are not local and have their own health problems, but I am in the same city and live nearby their parents. Neighbors have been dropping off meals and the occasional floral arrangement, but most of their neighbors are elderly, too. What they really needed was reliable transportation to and from the hospital or nursing facility in a car the dad doesn't have to climb into, like a big SUV, and my car is a smallish sedan with a low threshold. Uber had been difficult because of the different car models and he felt rushed to get himself out the door before the deadline when the driver would cancel and drive away. So I've been able to accommodate his schedule for the most part, and I know he appreciates it. Plus I have a chance to check in with him every trip and hopefully offer an opportunity for him to decompress and share how he's feeling.
posted by citygirl at 11:35 AM on August 19, 2022 [2 favorites]
Oh Nieshka, I am SO sorry this is happening. Not exactly this, but versions of this have happened in my life, and in fact are happening right now, and can reasonably be expected to happen some more later.
I think others have given great advice above, especially about really clearly asking for specific help from your siblings and your friends. I know even coming up with the specific tasks and then mustering the energy to ask while keeping your energy non-angry and non-judgy is YET ANOTHER THING TO DO, and it’s not fair.
One thing that has been helpful for me is coming up with some pat phrases and formulas to talk about what’s happening that I like. They communicate what’s happening, but because I say them over and over again they don’t trigger a lot of overwhelming emotion in the moment. I’ve got: “My family is having an ongoing medical crisis right now” and “I am in the midst of a hard, sad situation right now, my [person in my life] has [very bad illness]” . Those are more formal ones, more for work relationships and acquaintances. I also have some informal ones for friends usually for answering the question “so how are things going?” …..“Things are a regular level of new-normal shitty today” or “Just barely hanging on, how are you?”
Right now you have an unreasonable number of things to do AND a very large amount of high emotion. I know that it feels like in any way opening up to the emotion seems extremely dangerous, like if you start it won’t stop and you won’t be able to do ANY of the unreasonable number of things. But probably it is better and helpful to express that emotion sometimes?
I have found that it is possible to do “now it is time for expressing strong emotions” in contained amounts of time and then wrap it up, splash some water on my face, do a full body shake and then say to myself “ok, that’s all of that I have time for today” and go back to doing some of the unreasonable number of things.
Here’s how I personally do it: I drive to some fairly anonymous parking lot and park in some corner far away from other cars. I set a timer on my phone for 20 minutes and start writing in the notebook I always keep in my car. I usually start with “here is what is on my mind” and just keep going. What comes out might be about the actual crisis situation or it might be just a run on sentence of things I have to do or it might quickly morph into some grievance I didn’t even know I had or anything. The rule is I don’t stop writing until the timer goes off unless I start crying. If I start crying I try to go with it. I try to really let the emotions come up and be really loud about it. Sometimes it doesn’t happen. Sometimes I just get prickly eyes and it’s frustrating because I feel like I WANT to cry and it just won’t happen and I write THAT down. I keep a towel in the car for crying into.
When the timer goes off, I am done. I don’t have to be done if I don’t want to be and have some more time. Sometimes I just stare into space for awhile, but pretty quickly I wrap it up and drive off to do some more of my endless list of things to do.
Sometimes it feels cathartic. Mostly it just feels like brushing my teeth, tedious but better than not doing it.
Obviously the parking lot part is weird, and I think that’s just me, somehow it feels more private to me than being at home (it is, I live with FOUR OTHER PEOPLE). Probably a lot of people could do something like that in therapy but not me! The presence of another person is very inhibiting to my emotions.
Anyway, I am so sorry your parent is so sick and I hope maybe a little of what I wrote is helpful, but even if it isn’t, I am glad you posted this here and I hope you get some measure of support from our answers.
posted by Jenny'sCricket at 5:03 AM on August 21, 2022 [1 favorite]
I think others have given great advice above, especially about really clearly asking for specific help from your siblings and your friends. I know even coming up with the specific tasks and then mustering the energy to ask while keeping your energy non-angry and non-judgy is YET ANOTHER THING TO DO, and it’s not fair.
One thing that has been helpful for me is coming up with some pat phrases and formulas to talk about what’s happening that I like. They communicate what’s happening, but because I say them over and over again they don’t trigger a lot of overwhelming emotion in the moment. I’ve got: “My family is having an ongoing medical crisis right now” and “I am in the midst of a hard, sad situation right now, my [person in my life] has [very bad illness]” . Those are more formal ones, more for work relationships and acquaintances. I also have some informal ones for friends usually for answering the question “so how are things going?” …..“Things are a regular level of new-normal shitty today” or “Just barely hanging on, how are you?”
Right now you have an unreasonable number of things to do AND a very large amount of high emotion. I know that it feels like in any way opening up to the emotion seems extremely dangerous, like if you start it won’t stop and you won’t be able to do ANY of the unreasonable number of things. But probably it is better and helpful to express that emotion sometimes?
I have found that it is possible to do “now it is time for expressing strong emotions” in contained amounts of time and then wrap it up, splash some water on my face, do a full body shake and then say to myself “ok, that’s all of that I have time for today” and go back to doing some of the unreasonable number of things.
Here’s how I personally do it: I drive to some fairly anonymous parking lot and park in some corner far away from other cars. I set a timer on my phone for 20 minutes and start writing in the notebook I always keep in my car. I usually start with “here is what is on my mind” and just keep going. What comes out might be about the actual crisis situation or it might be just a run on sentence of things I have to do or it might quickly morph into some grievance I didn’t even know I had or anything. The rule is I don’t stop writing until the timer goes off unless I start crying. If I start crying I try to go with it. I try to really let the emotions come up and be really loud about it. Sometimes it doesn’t happen. Sometimes I just get prickly eyes and it’s frustrating because I feel like I WANT to cry and it just won’t happen and I write THAT down. I keep a towel in the car for crying into.
When the timer goes off, I am done. I don’t have to be done if I don’t want to be and have some more time. Sometimes I just stare into space for awhile, but pretty quickly I wrap it up and drive off to do some more of my endless list of things to do.
Sometimes it feels cathartic. Mostly it just feels like brushing my teeth, tedious but better than not doing it.
Obviously the parking lot part is weird, and I think that’s just me, somehow it feels more private to me than being at home (it is, I live with FOUR OTHER PEOPLE). Probably a lot of people could do something like that in therapy but not me! The presence of another person is very inhibiting to my emotions.
Anyway, I am so sorry your parent is so sick and I hope maybe a little of what I wrote is helpful, but even if it isn’t, I am glad you posted this here and I hope you get some measure of support from our answers.
posted by Jenny'sCricket at 5:03 AM on August 21, 2022 [1 favorite]
considering we are all in our thirties and would have to start dealing with losses in the family sooner or later
I don't know if this is helpful or not, but it's extremely likely that your friends are unwilling to face the fact (certainty even!) that this is coming for them in the next part of their lives, and that at least part of their crappy reaction is coming from a place of violent denial, like "I don't want to have to go through that, so get it away from me!" It's still shitty, and it's not an excuse, but if it's at all helpful to have a sense of why they're acting like this, that's what I think it is.
I'm so sorry. The only real advice I have for you is to take the pressure off of yourself to find a partner right now - it sticks out as the one source of needless stress that can be removed from the equation. Obviously it would be better to face this with support, but realistically it takes a bunch of time for a relationship to reach that point anyway.
posted by Ragged Richard at 2:25 PM on August 24, 2022
I don't know if this is helpful or not, but it's extremely likely that your friends are unwilling to face the fact (certainty even!) that this is coming for them in the next part of their lives, and that at least part of their crappy reaction is coming from a place of violent denial, like "I don't want to have to go through that, so get it away from me!" It's still shitty, and it's not an excuse, but if it's at all helpful to have a sense of why they're acting like this, that's what I think it is.
I'm so sorry. The only real advice I have for you is to take the pressure off of yourself to find a partner right now - it sticks out as the one source of needless stress that can be removed from the equation. Obviously it would be better to face this with support, but realistically it takes a bunch of time for a relationship to reach that point anyway.
posted by Ragged Richard at 2:25 PM on August 24, 2022
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posted by Nieshka at 6:27 AM on August 19, 2022