I desperately want to be who she needs: emotion control advice
October 23, 2013 1:10 PM Subscribe
I'm caring for my sick and declining wife, but my own anger issues have made me a terrible caregiver at times, let alone partner. We both love each other deeply, and want to spend our final years together, but if I can't stop making her miserable I have to go. I'm already pursuing therapy, have a psychiatrist, etc. I am not ashamed to seek help; the stakes are so high. I will be devastated if I have to walk away because I am a toxic presence, and so I'm determined to address my problems and be the husband she needs. I'm seeking ideas and advice on how to eliminate the bad so we can enjoy the good. More below...
It's very hard for me to write this... pardon my use of Anonymous.
My wife is very ill, with a likely chance of a reduced lifespan. In the spirit of anonymity, I won't list her illnesses in great detail, other than to say they are autoimmune related, disabling to the point where she is bed bound and uses a wheelchair. I provide all the care in our house -- we can't afford professional home care. I cook, clean, track meds, shop, etc., as well as maintain a full time job. It's a lot of work.
We're obviously under a ton of stress. For her condition, stress is dangerous; it can exacerbate her pain and her deterioration. She needs a peaceful loving environment. In this question, I'm going to focus on my feelings and problems, because I do believe that the change in our relationship needs to be unilateral; she's dealing with enough misery already. So, I myself am under a ton of stress.
And I have responded very badly to it. I'm hypervigilant to criticism, and immediately become defensive and argumentative, which stokes an argument that can last for hours and make us both miserable and hysterical. Because she is taking strong medications, and in chronic pain, she can have a short temper. We both know it, and understand that I have to have a thick skin when she is feeling irritable and lashes out at me or criticizes me. This is apparently a common problem for caregivers and their loved ones. It is my responsibility to have a thick skin, remember her condition and the state she's in at the moment, and respond with love and kindness.
But sometimes I don't. Sometimes I take it very personally, counter her statements, bicker with her, "go on the record," become resentful when an apology isn't accepted right away, etc. In a relationship with healthy people, this would be toxic. For ours, it's far worse. These arguments can escalate horribly to shouting, breakdowns, self-pity, threats to "give up", etc. It's not pretty, and it's draining, and so hard on her.
I've had a few therapists, who, despite my insistence that we focus on my problems with dealing with the situation, find a way to blame her or suggest that she has to "meet me halfway." Unfortunately, it's not applicable when someone is suffering so much. They can't make it to half way, and they're counting on their loved one to reach out further and be understanding. The ball is in my court.
I have no interest in walking away, thinking I'll find a more compatible partner some day. This is the woman I want to spend my life with -- and in fact, I have a life-limiting condition as well, so it's a morbid race to see who will go first. We both want to be with the other through the final years. It's now up to me to make that possible by becoming a good husband.
For the record: we are non-religious, creative, writers, lefties, possess dark senses of humor, rock the fuck out, and are actually really fun to be around. It's not all doom and gloom. But the doom is overwhelming us and I'm failing to keep it at bay and make our lives as good as they can be.
I am really, really open to any suggestions, though spirituality based advice doesn't mesh with my (or her) worldview. You can tell me I'm an asshole who needs to get out, and I'll accept that as a valid piece of advice, because I have thought the same thing. But she needs me to be a great partner, and deserves it, so I owe her a last ditch effort to get on that track quickly.
Thanks in advance.
It's very hard for me to write this... pardon my use of Anonymous.
My wife is very ill, with a likely chance of a reduced lifespan. In the spirit of anonymity, I won't list her illnesses in great detail, other than to say they are autoimmune related, disabling to the point where she is bed bound and uses a wheelchair. I provide all the care in our house -- we can't afford professional home care. I cook, clean, track meds, shop, etc., as well as maintain a full time job. It's a lot of work.
We're obviously under a ton of stress. For her condition, stress is dangerous; it can exacerbate her pain and her deterioration. She needs a peaceful loving environment. In this question, I'm going to focus on my feelings and problems, because I do believe that the change in our relationship needs to be unilateral; she's dealing with enough misery already. So, I myself am under a ton of stress.
And I have responded very badly to it. I'm hypervigilant to criticism, and immediately become defensive and argumentative, which stokes an argument that can last for hours and make us both miserable and hysterical. Because she is taking strong medications, and in chronic pain, she can have a short temper. We both know it, and understand that I have to have a thick skin when she is feeling irritable and lashes out at me or criticizes me. This is apparently a common problem for caregivers and their loved ones. It is my responsibility to have a thick skin, remember her condition and the state she's in at the moment, and respond with love and kindness.
But sometimes I don't. Sometimes I take it very personally, counter her statements, bicker with her, "go on the record," become resentful when an apology isn't accepted right away, etc. In a relationship with healthy people, this would be toxic. For ours, it's far worse. These arguments can escalate horribly to shouting, breakdowns, self-pity, threats to "give up", etc. It's not pretty, and it's draining, and so hard on her.
I've had a few therapists, who, despite my insistence that we focus on my problems with dealing with the situation, find a way to blame her or suggest that she has to "meet me halfway." Unfortunately, it's not applicable when someone is suffering so much. They can't make it to half way, and they're counting on their loved one to reach out further and be understanding. The ball is in my court.
I have no interest in walking away, thinking I'll find a more compatible partner some day. This is the woman I want to spend my life with -- and in fact, I have a life-limiting condition as well, so it's a morbid race to see who will go first. We both want to be with the other through the final years. It's now up to me to make that possible by becoming a good husband.
For the record: we are non-religious, creative, writers, lefties, possess dark senses of humor, rock the fuck out, and are actually really fun to be around. It's not all doom and gloom. But the doom is overwhelming us and I'm failing to keep it at bay and make our lives as good as they can be.
I am really, really open to any suggestions, though spirituality based advice doesn't mesh with my (or her) worldview. You can tell me I'm an asshole who needs to get out, and I'll accept that as a valid piece of advice, because I have thought the same thing. But she needs me to be a great partner, and deserves it, so I owe her a last ditch effort to get on that track quickly.
Thanks in advance.
You sound like a good, caring person in a very difficult situation. The common answer to caretaker burn-out is getting help so that you can take a break. Taking an hour or two for yourself shouldn't make you feel guilty -- you'd be taking care of your mental health, which will enable you to be a better partner to her. Is there any chance of getting some regular respite care?
posted by chowflap at 1:20 PM on October 23, 2013 [3 favorites]
posted by chowflap at 1:20 PM on October 23, 2013 [3 favorites]
First of all, I am so sorry this is happening to you. This is an awful situation.
I am going to suggest a physical, situational solution to your problem. It's not going to be easy, but it will work if you are committed to it. And it will sound very simple, but it is simply this: when you feel yourself beginning to "take it very personally, counter her statements, bicker with her, "go on the record," become resentful when an apology isn't accepted right away, etc." you walk out of the room immediately. You go somewhere else, even if it's just another room in the house. Go ahead and say all the awful things you need to say and react however you need to react - just do it to an empty room.
You are entitled to those feelings, and are entitled to an outlet for them. Just make it a point to not do it in front of her. Even if you have to leave the house for a few hours and go to a sports bar or bookstore or whatever ... a few hours is better than leaving her forever.
Feel free to memail me if you just want someone to chat with. Be strong and be positive; you can and will get through this.
posted by jbickers at 1:21 PM on October 23, 2013 [14 favorites]
I am going to suggest a physical, situational solution to your problem. It's not going to be easy, but it will work if you are committed to it. And it will sound very simple, but it is simply this: when you feel yourself beginning to "take it very personally, counter her statements, bicker with her, "go on the record," become resentful when an apology isn't accepted right away, etc." you walk out of the room immediately. You go somewhere else, even if it's just another room in the house. Go ahead and say all the awful things you need to say and react however you need to react - just do it to an empty room.
You are entitled to those feelings, and are entitled to an outlet for them. Just make it a point to not do it in front of her. Even if you have to leave the house for a few hours and go to a sports bar or bookstore or whatever ... a few hours is better than leaving her forever.
Feel free to memail me if you just want someone to chat with. Be strong and be positive; you can and will get through this.
posted by jbickers at 1:21 PM on October 23, 2013 [14 favorites]
Have you looked into support groups for caregivers? They're often set up for specific conditions (e.g., an Alzheimer caregivers support group), so depending on how common your wife's condition is, they may be more or less available in your area.
I'd also look for therapists who specialize in loss, grief, and/or chronic or terminal illnesses. It sounds like your past therapists have neglected that aspect of the situation.
I would also caution you to make sure your expectations for yourself are realistic. It would be great if we could all meet other people's irritation, anger, or outbursts with loving kindness and infinite patience, but most of us are human and we're not going to get 100% there 100% of the time. Beating yourself up with how you "should be acting" in a perfect world can just make you feel worse.
Loving Kindness Meditation has been fairly well shown to increase compassion, and it might be helpful to add that practice into your day.
posted by jaguar at 1:22 PM on October 23, 2013 [22 favorites]
I'd also look for therapists who specialize in loss, grief, and/or chronic or terminal illnesses. It sounds like your past therapists have neglected that aspect of the situation.
I would also caution you to make sure your expectations for yourself are realistic. It would be great if we could all meet other people's irritation, anger, or outbursts with loving kindness and infinite patience, but most of us are human and we're not going to get 100% there 100% of the time. Beating yourself up with how you "should be acting" in a perfect world can just make you feel worse.
Loving Kindness Meditation has been fairly well shown to increase compassion, and it might be helpful to add that practice into your day.
posted by jaguar at 1:22 PM on October 23, 2013 [22 favorites]
It sounds like she lashes out irrationally because her condition/medication in some large part. So when that happens, I think you'll need to employ some sort of coping mechanism immediately when you see that situation starting. When you feel anger, you might have to train yourself to take that anger, feel it inside, "play" with it a bit ("How angry do I feel? What exactly makes me angry about this? What would be the worst thing I could do with this anger? Let's play that out in my head for a bit...") until you're turning the anger into an intellectual exercise instead of snapping back at your wife.
I'm re-using some coping mechanisms from my OCD therapy, where reacting to a stimulus makes me want to do something immediately, but I train myself to not do that. I don't know if it'll be helpful, but maybe it could.
posted by xingcat at 1:22 PM on October 23, 2013 [4 favorites]
I'm re-using some coping mechanisms from my OCD therapy, where reacting to a stimulus makes me want to do something immediately, but I train myself to not do that. I don't know if it'll be helpful, but maybe it could.
posted by xingcat at 1:22 PM on October 23, 2013 [4 favorites]
Last night I watched the Australian documentary "A Good Man". Very much worth viewing in your circumstances.
posted by weapons-grade pandemonium at 1:23 PM on October 23, 2013 [1 favorite]
posted by weapons-grade pandemonium at 1:23 PM on October 23, 2013 [1 favorite]
Watch out for what I call the DAF spiral (I've talked about this on AskMe before):
The Debate: "I need you to do X for me."
Then one of you realizes that you're not going to do X and starts the Argument, which is a meta-debate.
The Argument: "You are raising your voice." or "You interrupted me when I stopped to take a breath."
Then one of you realizes that you're not going to win the Argument either, and starts the Fight, which is where the Argument expands to fill the entire length and breadth of the relationship.
The Fight: "You never take my feelings into account! You constantly criticize me!"
And here's the thing to remember -- the Debate has nothing to do with the Argument or the Fight. So when you find yourself in Argument or Fight mode, take a step back and ask, "What is the Debate?" Sometimes, the Debate will be over nothing at all. At those times, take a deep breath and remind yourself that it's not her doing this. It's her illness and the meds and all the stuff that comes along with it, and she is a human being you have decided you are going to help, through the thick and the thin. Sometimes it's thicker than other times.
Other things I occasionally say to myself that help:
"Is my ego more important than my partner being happy right now?"
"Am I mad at her or at myself?"
"I am not setting an inviolable precedent if I 'give in' on this thing."
posted by Etrigan at 1:23 PM on October 23, 2013 [45 favorites]
The Debate: "I need you to do X for me."
Then one of you realizes that you're not going to do X and starts the Argument, which is a meta-debate.
The Argument: "You are raising your voice." or "You interrupted me when I stopped to take a breath."
Then one of you realizes that you're not going to win the Argument either, and starts the Fight, which is where the Argument expands to fill the entire length and breadth of the relationship.
The Fight: "You never take my feelings into account! You constantly criticize me!"
And here's the thing to remember -- the Debate has nothing to do with the Argument or the Fight. So when you find yourself in Argument or Fight mode, take a step back and ask, "What is the Debate?" Sometimes, the Debate will be over nothing at all. At those times, take a deep breath and remind yourself that it's not her doing this. It's her illness and the meds and all the stuff that comes along with it, and she is a human being you have decided you are going to help, through the thick and the thin. Sometimes it's thicker than other times.
Other things I occasionally say to myself that help:
"Is my ego more important than my partner being happy right now?"
"Am I mad at her or at myself?"
"I am not setting an inviolable precedent if I 'give in' on this thing."
posted by Etrigan at 1:23 PM on October 23, 2013 [45 favorites]
You sound very loving and caring to even be asking this question - which makes you a wonderful partner in my opinion. The situation you are describing would require you to be superhuman in terms of never expressing your own feelings. No one is superhuman. You have the right to feel guilty, just as you have a right to all of your other feelings, but you aren't guilty of anything but being human and doing the best you can.
Caregivers experience burnout at astronomical rates. Rather than seek therapy, I suggest you first seek caregiver support. Online is good, but in person is better. Since you are able to go to work, I presume you might be okay to get out of the house one night a week, or every other week maybe. Support groups help so much by being a place where you can hear that you are not alone in your struggle, and they provide a place where it is safe for to vent your frustrations guilt-free, out of earshot of your loved one.
Often these groups are facilitated by your local hospital, or by churches (okay to go even if you are not a member of the church). You might find a meetup group in your area. You can also probably find one or ten Facebook groups on the subject, for a place to vent when you can't get out of the house.
I hope that your wife can also find a support group where she can vent, so that you aren't bearing the brunt of everything. I don't have to tell you that being bed-bound is not only frustrating but incredibly boring. Even some online support might be great for her, just for some variety in her day.
Best of luck to you both.
posted by vignettist at 1:23 PM on October 23, 2013 [5 favorites]
Caregivers experience burnout at astronomical rates. Rather than seek therapy, I suggest you first seek caregiver support. Online is good, but in person is better. Since you are able to go to work, I presume you might be okay to get out of the house one night a week, or every other week maybe. Support groups help so much by being a place where you can hear that you are not alone in your struggle, and they provide a place where it is safe for to vent your frustrations guilt-free, out of earshot of your loved one.
Often these groups are facilitated by your local hospital, or by churches (okay to go even if you are not a member of the church). You might find a meetup group in your area. You can also probably find one or ten Facebook groups on the subject, for a place to vent when you can't get out of the house.
I hope that your wife can also find a support group where she can vent, so that you aren't bearing the brunt of everything. I don't have to tell you that being bed-bound is not only frustrating but incredibly boring. Even some online support might be great for her, just for some variety in her day.
Best of luck to you both.
posted by vignettist at 1:23 PM on October 23, 2013 [5 favorites]
You say you can't afford professional home care, but can you afford a once-a-week cleaning lady or a grocery delivery service? Getting some of the chores off your plate would probably free up some mental energy.
posted by oinopaponton at 1:24 PM on October 23, 2013 [20 favorites]
posted by oinopaponton at 1:24 PM on October 23, 2013 [20 favorites]
You have a therapist; do you have a support group? There are groups for caretakers, and they provide something you really need; the chance to vent, to get sympathy, to connect with others who understand exactly how you feel.
Are you both without any friends or family? Can anyone at all step in, give you a few hour's rest, someone else for your wife to talk to, help clean the house? If you have anyone who can help in that way, now is the time to ask them.
posted by emjaybee at 1:25 PM on October 23, 2013 [5 favorites]
Are you both without any friends or family? Can anyone at all step in, give you a few hour's rest, someone else for your wife to talk to, help clean the house? If you have anyone who can help in that way, now is the time to ask them.
posted by emjaybee at 1:25 PM on October 23, 2013 [5 favorites]
How plugged in to the local left network are you? Do you do local activist stuff?
It is unlikely that you are in Minneapolis, but if you are, I know several young and reliable people who would be glad of such work.
A young activist-y type could be paid a modest amount in cash to do certain chores such as shopping or cleaning. A lot of twenties-ish hippie types are looking to make some part time cash and would be happy to do so working with "movement" people. This is the kind of person you could find via the co-op, the local bookstore, etc. Such a person will be able to work without agency fees and will be able to work on less notice and for odder hours than a professional. (Which doesn't mean you exploit them - it just means that you're looking for someone for odd jobs for an irregular twenty hours a month or something instead of someone for a regular ten hours a week Monday - Friday.)
posted by Frowner at 1:26 PM on October 23, 2013 [7 favorites]
It is unlikely that you are in Minneapolis, but if you are, I know several young and reliable people who would be glad of such work.
A young activist-y type could be paid a modest amount in cash to do certain chores such as shopping or cleaning. A lot of twenties-ish hippie types are looking to make some part time cash and would be happy to do so working with "movement" people. This is the kind of person you could find via the co-op, the local bookstore, etc. Such a person will be able to work without agency fees and will be able to work on less notice and for odder hours than a professional. (Which doesn't mean you exploit them - it just means that you're looking for someone for odd jobs for an irregular twenty hours a month or something instead of someone for a regular ten hours a week Monday - Friday.)
posted by Frowner at 1:26 PM on October 23, 2013 [7 favorites]
We both know it, and understand that I have to have a thick skin when she is feeling irritable and lashes out at me or criticizes me.
I think you ought to examine this assumption very closely. Is it true and does it help anyone? If her anger makes it impossible for you to care for her, is she helped?
posted by Ironmouth at 1:28 PM on October 23, 2013 [30 favorites]
I think you ought to examine this assumption very closely. Is it true and does it help anyone? If her anger makes it impossible for you to care for her, is she helped?
posted by Ironmouth at 1:28 PM on October 23, 2013 [30 favorites]
First of all find a support group. Then find respite care so that you can go out and do things that refill you.
If you're running on fumes, you have nothing to give your wife. So no matter how much you want to, you just can't be that loving, giving person.
Take care of your wife's husband. Then take care of your wife.
Contact the local chapter of the association that deals with your wife's illness. They can help with support and resources for you.
You may be eligible for SSId, Medicare and State programs to help with home care.
This is too much to do on your own. It just is. Accept it, and spend your time and energy finding help.
Also, don't yell and argue, it's not productive, it's destructive. Have a code word that you say when you catch yourself in a fight: Cinnamon. Say it and then say, "this isn't worth fighting about I love you."
Hang in there, but get help!
posted by Ruthless Bunny at 1:35 PM on October 23, 2013 [13 favorites]
If you're running on fumes, you have nothing to give your wife. So no matter how much you want to, you just can't be that loving, giving person.
Take care of your wife's husband. Then take care of your wife.
Contact the local chapter of the association that deals with your wife's illness. They can help with support and resources for you.
You may be eligible for SSId, Medicare and State programs to help with home care.
This is too much to do on your own. It just is. Accept it, and spend your time and energy finding help.
Also, don't yell and argue, it's not productive, it's destructive. Have a code word that you say when you catch yourself in a fight: Cinnamon. Say it and then say, "this isn't worth fighting about I love you."
Hang in there, but get help!
posted by Ruthless Bunny at 1:35 PM on October 23, 2013 [13 favorites]
If you have them around, don't be afraid to ask friends and family for practical help, as well. If someone can make the grocery run for you or stop to pick up prescriptions, that's one less little bit of stress to cope with.
posted by The Underpants Monster at 1:36 PM on October 23, 2013
posted by The Underpants Monster at 1:36 PM on October 23, 2013
I've had a few therapists, who, despite my insistence that we focus on my problems with dealing with the situation, find a way to blame her or suggest that she has to "meet me halfway." Unfortunately, it's not applicable when someone is suffering so much. They can't make it to half way, and they're counting on their loved one to reach out further and be understanding. The ball is in my court.
The thing that I'm worried about, on your behalf as an outside observer, is that you are martyring yourself somewhat; you're ignoring people who suggest that the burden is not fully yours to bear, that she has to try and meet you halfway somewhat. The kind of resentment (conscious or not) that builds when a person martyrs themselves is going to shorten their temper and make them less able to hold their own end, rather than make it easier.
What if, for a week, you took a deep breath and realized that you can only take care of her 50% of the time...and that, with full-time caregiving and full-time working, you're going well beyond the 50% that can be expected of anyone? If you realized that having a short temper isn't just expected under the circumstances, but actually okay? That you can be overwhelmed and frustrated and at the same time be supportive of her and doing your best, trying your hardest?
If you can -- just for a week -- accept that you're only responsible for meeting her halfway, and that since she can't meet you halfway you're in a crappy position...then maybe you can start taking extra steps to take care of yourself instead of being a martyr and making your own situation worse.
Look at it like this: they say you can't love another person unless you love yourself. Well, you can't take care of another person unless you take care of yourself, and right now -- refusing to accept that you're in an untenable situation that cannot be maintained -- you're not taking care of yourself. It's time for you to give yourself some slack. Be angry, but don't feel guilty. Find outlets for that anger instead, good constructive ones. Be forgiving, not just of her but of yourself. Take time not just to help her, but to decompress and enjoy yourself, even if it doesn't or can't involve her. Most importantly, recognize that anyone in your situation would already be in bad shape, but that by forcing yourself to be selfless you're setting yourself up to fail; you'll never be able to be a perfect caregiver, and so you're going to be kicking yourself constantly for the failures that nobody in your position could avoid anyway.
So, a week of acting how you feel, and being as nice to yourself as you are to the woman you love. Maybe that will take the pressure off a bit, so that you can get enough perspective to help yourself (and consequently her) further.
I'm sorry you're both going through this. Good luck.
posted by davejay at 1:37 PM on October 23, 2013 [40 favorites]
The thing that I'm worried about, on your behalf as an outside observer, is that you are martyring yourself somewhat; you're ignoring people who suggest that the burden is not fully yours to bear, that she has to try and meet you halfway somewhat. The kind of resentment (conscious or not) that builds when a person martyrs themselves is going to shorten their temper and make them less able to hold their own end, rather than make it easier.
What if, for a week, you took a deep breath and realized that you can only take care of her 50% of the time...and that, with full-time caregiving and full-time working, you're going well beyond the 50% that can be expected of anyone? If you realized that having a short temper isn't just expected under the circumstances, but actually okay? That you can be overwhelmed and frustrated and at the same time be supportive of her and doing your best, trying your hardest?
If you can -- just for a week -- accept that you're only responsible for meeting her halfway, and that since she can't meet you halfway you're in a crappy position...then maybe you can start taking extra steps to take care of yourself instead of being a martyr and making your own situation worse.
Look at it like this: they say you can't love another person unless you love yourself. Well, you can't take care of another person unless you take care of yourself, and right now -- refusing to accept that you're in an untenable situation that cannot be maintained -- you're not taking care of yourself. It's time for you to give yourself some slack. Be angry, but don't feel guilty. Find outlets for that anger instead, good constructive ones. Be forgiving, not just of her but of yourself. Take time not just to help her, but to decompress and enjoy yourself, even if it doesn't or can't involve her. Most importantly, recognize that anyone in your situation would already be in bad shape, but that by forcing yourself to be selfless you're setting yourself up to fail; you'll never be able to be a perfect caregiver, and so you're going to be kicking yourself constantly for the failures that nobody in your position could avoid anyway.
So, a week of acting how you feel, and being as nice to yourself as you are to the woman you love. Maybe that will take the pressure off a bit, so that you can get enough perspective to help yourself (and consequently her) further.
I'm sorry you're both going through this. Good luck.
posted by davejay at 1:37 PM on October 23, 2013 [40 favorites]
Oh, man, OP... I'm so sorry you're going through this. It sounds grueling. So often we try to sanctify caregivers ("he's such a saint!", "I could NEVER do that!"), forgetting that they are also PEOPLE, with needs, with feelings.
The first thing that popped into my head - and this is kinda weird, I know, since you mentioned that you are not religious, and I am sure as HELL not religious - is to check out your local branch of the Unitarian Universalists. I've visited a Uni church a few times and they are SUPER-DUPER committed to doing good works, community involvement, sharing the burdens of life, etc. Even if you have no interest whatsoever in joining their congregation, I'd bet you a box of cookies that either the pastor or someone in the congregation would have some excellent resources for you (community organizations, people willing to volunteer and or barter their time to help you out, support groups for caregivers, groups that provide respite care, etc).
posted by julthumbscrew at 1:38 PM on October 23, 2013 [4 favorites]
The first thing that popped into my head - and this is kinda weird, I know, since you mentioned that you are not religious, and I am sure as HELL not religious - is to check out your local branch of the Unitarian Universalists. I've visited a Uni church a few times and they are SUPER-DUPER committed to doing good works, community involvement, sharing the burdens of life, etc. Even if you have no interest whatsoever in joining their congregation, I'd bet you a box of cookies that either the pastor or someone in the congregation would have some excellent resources for you (community organizations, people willing to volunteer and or barter their time to help you out, support groups for caregivers, groups that provide respite care, etc).
posted by julthumbscrew at 1:38 PM on October 23, 2013 [4 favorites]
Also: if you can tell us approximately where you're located, Mefites are often very good at coming up with support resources for particular locales.
posted by julthumbscrew at 1:39 PM on October 23, 2013 [2 favorites]
posted by julthumbscrew at 1:39 PM on October 23, 2013 [2 favorites]
short version: you're not a saint, and nobody but you is expecting you to act like one, so stop holding yourself to saintly standards
posted by davejay at 1:39 PM on October 23, 2013 [9 favorites]
posted by davejay at 1:39 PM on October 23, 2013 [9 favorites]
Is your wife eligible for medicare, and might she be better off in a skilled nursing facility where she can be cared for by professionals?
It may not be the way you wanted your life to be, but it may be healthier for the both of you if you stopped trying to give her care yourself and left it to professionals.
It would help to know exactly what illness you were dealing with and to what degree of mobility your wife has.
You may be trying to dig the Panama Canal with a teaspoon, which is fruitless, frustrating and hopeless.
posted by Ruthless Bunny at 1:45 PM on October 23, 2013 [4 favorites]
It may not be the way you wanted your life to be, but it may be healthier for the both of you if you stopped trying to give her care yourself and left it to professionals.
It would help to know exactly what illness you were dealing with and to what degree of mobility your wife has.
You may be trying to dig the Panama Canal with a teaspoon, which is fruitless, frustrating and hopeless.
posted by Ruthless Bunny at 1:45 PM on October 23, 2013 [4 favorites]
Can you have a friend or family member sit with her one or two nights a week for a few hours while you have some alone time or time with your friends?
Sounds like you are trying to do your best in a tough situation and you are around and giving a lot, but if I was your wife, I might want some other company once in a while. Not saying that you should turn over all duties to someone else or get a babysitter, just that you have some time apart while you aren't working and some time for her to recalibrate and be social without being dependent on someone.
Both of you being apart and with other people for a night a week would probably help each of you appreciate the other more and put you in a better mood.
Did she have girls night with some friends before she reached her current state? Or a tradition with a buddy to go see the newest action movie together or something? If so, try to reinstate that and then use the time she is occupied or out to relax in whatever way works best for you.
posted by rmless at 1:46 PM on October 23, 2013 [1 favorite]
Sounds like you are trying to do your best in a tough situation and you are around and giving a lot, but if I was your wife, I might want some other company once in a while. Not saying that you should turn over all duties to someone else or get a babysitter, just that you have some time apart while you aren't working and some time for her to recalibrate and be social without being dependent on someone.
Both of you being apart and with other people for a night a week would probably help each of you appreciate the other more and put you in a better mood.
Did she have girls night with some friends before she reached her current state? Or a tradition with a buddy to go see the newest action movie together or something? If so, try to reinstate that and then use the time she is occupied or out to relax in whatever way works best for you.
posted by rmless at 1:46 PM on October 23, 2013 [1 favorite]
Support group. There are real and well-understood issues in providing care for someone who may be irrational or demented - or even just not entirely the person you once knew. Your therapist may not have any experience with this. Please find a mediated support group.
Call a local hospital auxiliary guild or a church or your local public library.
Very sorry about your situation.
posted by Lesser Shrew at 1:48 PM on October 23, 2013 [1 favorite]
Call a local hospital auxiliary guild or a church or your local public library.
Very sorry about your situation.
posted by Lesser Shrew at 1:48 PM on October 23, 2013 [1 favorite]
You need some respite. Can someone fill in now and then so that you can have some weekends away or nights off? Taking some time off now and then will help you stay with her for the long-term. This is a marathon, not a sprint. You can't keep on like this.
Also, I think your therapists are on to something. Not that they are right to blame anyone, but this is a relationship and the problems can't be dealt with from just one side. Does your wife have support and contact from others dealing with chronic pain or her condition? I don't think it is good for either of you to accept that her lashing out at you frequently is something that can't be addressed to any degree, and I wonder if support from her peers might be useful to her. I realize this isn't what you are interested in hearing, but I'm writing it because I have a relative with high levels of chronic pain and I've seen that this relative has over time become better at dealing with that pain.
posted by Area Man at 1:49 PM on October 23, 2013 [5 favorites]
Also, I think your therapists are on to something. Not that they are right to blame anyone, but this is a relationship and the problems can't be dealt with from just one side. Does your wife have support and contact from others dealing with chronic pain or her condition? I don't think it is good for either of you to accept that her lashing out at you frequently is something that can't be addressed to any degree, and I wonder if support from her peers might be useful to her. I realize this isn't what you are interested in hearing, but I'm writing it because I have a relative with high levels of chronic pain and I've seen that this relative has over time become better at dealing with that pain.
posted by Area Man at 1:49 PM on October 23, 2013 [5 favorites]
If you DO burn out, and become too toxic to help her, what will she do? Who will help?
See if you can get some of that help now, instead, so that maybe your sanity and relationship can be saved, and you don't have to leave her.
posted by ldthomps at 1:51 PM on October 23, 2013 [6 favorites]
See if you can get some of that help now, instead, so that maybe your sanity and relationship can be saved, and you don't have to leave her.
posted by ldthomps at 1:51 PM on October 23, 2013 [6 favorites]
Support groups and respite, yes. Also, run, do not walk, to the book Love Without Hurt by Stosny. Get a copy for you and a copy for her. Great, great stuff in there for learning how to shift those angry, resentful, blaming dynamics into compassion for yourself and your partner.
You have a huge and difficult burden, and so does she. Sounds like you both want to be more calm and loving but are understandably struggling under the circumstances. I think your heart is in the right place in not wanting to make additional demands on her because she is so ill. However--the book above makes this case eloquently--one of the most compassionate things you can do for her is to insist that she treat you with love and compassion. When she treats you with anger and unkindness, she devalues herself, too. Isn't that your experience, what's at the heart of your question? You don't like the person you are when you're so angry, you don't want to be that person... It will help her, too, when she moves away from those reactions and can respond to you with more love, patience, appreciation.
Hang in there. This sounds like such an intense and difficult situation. You are very brave and loving to admit there's a problem and that you want to do better. Really, get that book. Good luck to you both.
posted by Sublimity at 2:03 PM on October 23, 2013 [2 favorites]
You have a huge and difficult burden, and so does she. Sounds like you both want to be more calm and loving but are understandably struggling under the circumstances. I think your heart is in the right place in not wanting to make additional demands on her because she is so ill. However--the book above makes this case eloquently--one of the most compassionate things you can do for her is to insist that she treat you with love and compassion. When she treats you with anger and unkindness, she devalues herself, too. Isn't that your experience, what's at the heart of your question? You don't like the person you are when you're so angry, you don't want to be that person... It will help her, too, when she moves away from those reactions and can respond to you with more love, patience, appreciation.
Hang in there. This sounds like such an intense and difficult situation. You are very brave and loving to admit there's a problem and that you want to do better. Really, get that book. Good luck to you both.
posted by Sublimity at 2:03 PM on October 23, 2013 [2 favorites]
Came in to suggest some meditation. Something short and sweet, but regular. Headspace - http://www.getsomeheadspace.com and/or calm - http://www.calm.com both will help you slow down.
You just need to be able to slow down enough to permit your caring, loving rational mind override your anger level. It'll temper it. Give you space to examine why you're behaving in a toxic manner.
And, since you've specifically not mentioned the malady, some level of a support group - My father has severe alzheimers and it's valueable. Even if it's just to hear that you're not alone. Ask your therapists for suggestions for a support group - harder to find in smaller areas, but still worth pursing. If none exists, fuck it - go join a church (Quakers) and ignore the religious aspect. Skip going to services. I'm suggesting that you try and utilize the community support that organized religion can provide not join if you don't want to.
posted by Towelie at 2:03 PM on October 23, 2013 [1 favorite]
You just need to be able to slow down enough to permit your caring, loving rational mind override your anger level. It'll temper it. Give you space to examine why you're behaving in a toxic manner.
And, since you've specifically not mentioned the malady, some level of a support group - My father has severe alzheimers and it's valueable. Even if it's just to hear that you're not alone. Ask your therapists for suggestions for a support group - harder to find in smaller areas, but still worth pursing. If none exists, fuck it - go join a church (Quakers) and ignore the religious aspect. Skip going to services. I'm suggesting that you try and utilize the community support that organized religion can provide not join if you don't want to.
posted by Towelie at 2:03 PM on October 23, 2013 [1 favorite]
I'm sorry that you're going through this. I know how hard it is. I lost my wife to cancer and was her primary caregiver while she was sick.
These are things that helped me:
1) Go take care of yourself. Leave the house. Do whatever you want. Have a little bit of fun. Visit with friends. Even if it's only for a little bit, a few hours a couple times a week.
2) Get some help. I know how hard this is. Everyone, before they're put in this situation, thinks there's some sort of free in-home care service that someone is going to offer you, but there isn't. Even hospice only offers so much. So your best bet is probably a friend or family member. Even if they can come over one evening a week or something, it's a relief to be able to just sit and watch TV without attending to someone else for a couple hours.
3) Let go. One of the things that helped me the most with my situation was the realization that this is just how the world's going to be and there's not really anything I can do about it, so getting angry serves no purpose. I might as well accept things as they are and the world will continue as it was. If you can come to terms with the fact that you have very little control, thn you''ll be less angry about the lack of control that you have.
I'm sorry, I know it's hard.
posted by tylerkaraszewski at 2:08 PM on October 23, 2013 [5 favorites]
These are things that helped me:
1) Go take care of yourself. Leave the house. Do whatever you want. Have a little bit of fun. Visit with friends. Even if it's only for a little bit, a few hours a couple times a week.
2) Get some help. I know how hard this is. Everyone, before they're put in this situation, thinks there's some sort of free in-home care service that someone is going to offer you, but there isn't. Even hospice only offers so much. So your best bet is probably a friend or family member. Even if they can come over one evening a week or something, it's a relief to be able to just sit and watch TV without attending to someone else for a couple hours.
3) Let go. One of the things that helped me the most with my situation was the realization that this is just how the world's going to be and there's not really anything I can do about it, so getting angry serves no purpose. I might as well accept things as they are and the world will continue as it was. If you can come to terms with the fact that you have very little control, thn you''ll be less angry about the lack of control that you have.
I'm sorry, I know it's hard.
posted by tylerkaraszewski at 2:08 PM on October 23, 2013 [5 favorites]
On a very basic level you sound like any two people forced to spend way too much time with each other without time apart. Even the best of friends and healthiest of couples can't be around each other 24/7 without coming to the place you are now.
You both need a change of scenery, change of company, and alone time. You're looking at this like you have to grasp and hold on to every second, but it is only making the problem worse.
Let go a little of the control of the situation- which doesn't make you a bad care giver- in fact, it will make you a better one.
posted by haplesschild at 2:09 PM on October 23, 2013 [1 favorite]
You both need a change of scenery, change of company, and alone time. You're looking at this like you have to grasp and hold on to every second, but it is only making the problem worse.
Let go a little of the control of the situation- which doesn't make you a bad care giver- in fact, it will make you a better one.
posted by haplesschild at 2:09 PM on October 23, 2013 [1 favorite]
I'm sorry you're both going through this. It sounds really trying.
I'd say that your situation calls for a lot of love and learned optimism. So my advice would be to try and keep that going. Sure, things are dire, but you have each other and you obviously love each other dearly. Speaking as someone who is very alone right now, I would trade this loneliness for a connection to someone like the one you two obviously share, even if it comes with its own set of limitations like you have. Because-- as you realize already-- your love is worth all that pain and hardship. It really is. So try to hold on to that knowledge, the good parts. Thing is, I find there is always something to be grateful for, if you look hard enough.
Meditation might help you not knee-jerk so much, and keep you more stable as well. Also, relaxation techniques-- such as ones where you go through and tense and release all your muscles systematically, may help alleviate your stress and quieten your mind. It only takes about 5 minutes in bed, for me, to do. CBT may help you stop lashing out, as well. It may also help with any 'all or nothing' thinking you both may have.
Can she apply for disability, or care in some way? To get some extra money? Even having one person or a couple of hours a week free should help the situation feel less tense. You may just need some times apart.
Can you streamline chores? Do your grocery shopping online with a saved shopping list with the most common items saved on it? Or is there any way you can think of to streamline duties you're repeating often? For example, cooking bigger portions as you cook, then freezing half of that?
The thing is, I find that whenever I'm being toxic with my loved ones, it's because I'm scared or fearful or stressed ... or something is bothering me about the situation. I find that if I am mindful about interacting from a place of love, rather than fear, and don't take the person for granted-- it helps me to curb those knee-jerk tendencies where I manifest my insecurities all over that person. It's not really about them.
And the risk of sounding preachy or fluffy or whatever...
I know it's terrible, and scary. You may lose each other soon. It may well be a race to who drops off the perch first. But you know what? That's okay. Because we're all kinda getting out of life the same way. Because nobody knows what tomorrow holds. Because right now, you have each other, you love each other, and that's precious. Life is difficult, but totally do-able.
You two can endure; I can tell in the way you write about your situation just how strong your love is for each other. And when that day does come when you have to part-- as it comes for all of us-- you want it to be through smiles because you guys made the best of this difficult situation, and loved each other despite it all. You want those memories to be good, and happy despite your hardships, and you want it to be as far from now as you can possibly fight for, so you can prolong your time together. So don't lose hope.
Best of luck.
posted by Dimes at 2:09 PM on October 23, 2013 [6 favorites]
I'd say that your situation calls for a lot of love and learned optimism. So my advice would be to try and keep that going. Sure, things are dire, but you have each other and you obviously love each other dearly. Speaking as someone who is very alone right now, I would trade this loneliness for a connection to someone like the one you two obviously share, even if it comes with its own set of limitations like you have. Because-- as you realize already-- your love is worth all that pain and hardship. It really is. So try to hold on to that knowledge, the good parts. Thing is, I find there is always something to be grateful for, if you look hard enough.
Meditation might help you not knee-jerk so much, and keep you more stable as well. Also, relaxation techniques-- such as ones where you go through and tense and release all your muscles systematically, may help alleviate your stress and quieten your mind. It only takes about 5 minutes in bed, for me, to do. CBT may help you stop lashing out, as well. It may also help with any 'all or nothing' thinking you both may have.
Can she apply for disability, or care in some way? To get some extra money? Even having one person or a couple of hours a week free should help the situation feel less tense. You may just need some times apart.
Can you streamline chores? Do your grocery shopping online with a saved shopping list with the most common items saved on it? Or is there any way you can think of to streamline duties you're repeating often? For example, cooking bigger portions as you cook, then freezing half of that?
The thing is, I find that whenever I'm being toxic with my loved ones, it's because I'm scared or fearful or stressed ... or something is bothering me about the situation. I find that if I am mindful about interacting from a place of love, rather than fear, and don't take the person for granted-- it helps me to curb those knee-jerk tendencies where I manifest my insecurities all over that person. It's not really about them.
And the risk of sounding preachy or fluffy or whatever...
I know it's terrible, and scary. You may lose each other soon. It may well be a race to who drops off the perch first. But you know what? That's okay. Because we're all kinda getting out of life the same way. Because nobody knows what tomorrow holds. Because right now, you have each other, you love each other, and that's precious. Life is difficult, but totally do-able.
You two can endure; I can tell in the way you write about your situation just how strong your love is for each other. And when that day does come when you have to part-- as it comes for all of us-- you want it to be through smiles because you guys made the best of this difficult situation, and loved each other despite it all. You want those memories to be good, and happy despite your hardships, and you want it to be as far from now as you can possibly fight for, so you can prolong your time together. So don't lose hope.
Best of luck.
posted by Dimes at 2:09 PM on October 23, 2013 [6 favorites]
I've had a few therapists, who, despite my insistence that we focus on my problems with dealing with the situation, find a way to blame her or suggest that she has to "meet me halfway." Unfortunately, it's not applicable when someone is suffering so much. They can't make it to half way, and they're counting on their loved one to reach out further and be understanding. The ball is in my court.
You should listen to this advice though. You're making unreasonable demands on yourself. If you are so caught up in the way you are "supposed" to be and more importantly, how you are "supposed" to feel, you are going to end up holding yourself to a standard you can't achieve. You want something noble, which is to be loving and supportive to your wife. But that's inside you already. You don't have to strive so hard to make that happen a certain way. It creates suffering when you feel like you're not measuring up, and you're creating that for yourself from what it sounds like.
Your anger is there. You can't make yourself not be angry. You can choose how you relate to your anger, and how you deal with it, but you can't delete the state of being angry. Your anger is asking something of you if you listen to it. What are you angry about? What do you want and need? Take time to listen to your anger and be with it and it will free up more room to be with others. When you practice being kind to yourself, it will make it easier for you to be kind to others.
Tune in to exactly how you are feeling and be with that, however unpleasant it is. You might need to take time and space for yourself to be able to do that. You can't unfeel what you feel and it's not productive to.
posted by mermily at 2:14 PM on October 23, 2013 [5 favorites]
Is your wife getting any kind of counseling or other regular, professional mental/emotional care support? I'm asking because the short temper and lashing out you describe are also signs of depression, which is common in chronic pain sufferers. You say she shouldn't deal with stress because of her illness, but part of dealing with her stress levels involves developing coping skills for managing the stress and pain associated with her illness, and counseling would be invaluable for that. I have had a close family member with a serious long-term illness and a lot of pain to deal with, and mental health care (medication, spiritual care, meditation) provided a lot of comfort and relief to them. A 'peaceful, loving environment' is not something you can unilaterally provide.
posted by aiglet at 2:23 PM on October 23, 2013 [11 favorites]
posted by aiglet at 2:23 PM on October 23, 2013 [11 favorites]
Also, don't "eliminate the bad so you can embrace the good." The sunlight is not going to start peeking through the cracks until you embrace that 1. the situation sucks and 2. that is the situation you are dealing with. It sounds horrible, but when you open yourself up to be consumed by the grief (of disease, unmet expectations, guilt, whatever) you are saying, "This is the reality and I am choosing to show up for it." It can result in a beautiful level of intimacy and sort of an engagement with the glorious parts of life. You can't eliminate the bad things from your life. That's just choosing to be numb, or to not live at all.
posted by mermily at 2:23 PM on October 23, 2013 [7 favorites]
posted by mermily at 2:23 PM on October 23, 2013 [7 favorites]
A relative of mine was a full-time caregiver for another relative with advanced Parkinson's disease. They tried to do it for a long time without help, and although the caretaker relative was in good health and skilled at nursing, the caregiving took its toll. They were resistant to in-home care, of any variety whether health-related or domestic help, but at some point one of the doctors or nurses or someone realized, hey, these people need services. It turned out the relative's government-sponsored health plan made them eligible for all sorts of occupational therapy and technology/adaptive services to make being at home a lot easier. Even though my relatives thought that Parkinson's just is what it is and there wasn't really anything that could be done, it turned out that there was a lot that could be changed. For the caretaker, it lightened the burden.
I know you say that money is an issue, but at this point you cannot afford to not get help. You and your wife need support. You can't do this alone.
Also, caregiver-support group STAT.
posted by stowaway at 2:27 PM on October 23, 2013 [3 favorites]
I know you say that money is an issue, but at this point you cannot afford to not get help. You and your wife need support. You can't do this alone.
Also, caregiver-support group STAT.
posted by stowaway at 2:27 PM on October 23, 2013 [3 favorites]
Hi all. OP here. I am mortified that I posted this exaggerated, self-pitying version of what's going on. You're all so nice and caring, and sympathetic, but I am seriously having emotional regulation problems that are entirely my fault, and my responsibility, and are ruining my marriage and my wife's health. Yes, it's a tough situation to be in, but the post comes off like "poor me, i'm so messed up from taking care of a sick person," which is self indulgent, ableist bullshit. It's insulting to you for me to take this posture (which I wish to hell I'd noticed when writing it... always preview, always think twice...) and then solicit advice and support that i don't deserve.
If I was an ordinary person with a tough caregiving situation, this would be fantastic advice, and I salute you for it. But the narrative I gave you is a toxic one in my head that honestly is one of the core reasons why I'm ruining my marriage and my partner's health. I really should have thought this post through, and really identified what I needed to ask, before posting a doom and gloom story.
I'm really sorry to have wasted your time and good intentions. Please don't respond to this post anymore.
posted by cheekycheeky at 2:28 PM on October 23, 2013 [1 favorite]
If I was an ordinary person with a tough caregiving situation, this would be fantastic advice, and I salute you for it. But the narrative I gave you is a toxic one in my head that honestly is one of the core reasons why I'm ruining my marriage and my partner's health. I really should have thought this post through, and really identified what I needed to ask, before posting a doom and gloom story.
I'm really sorry to have wasted your time and good intentions. Please don't respond to this post anymore.
posted by cheekycheeky at 2:28 PM on October 23, 2013 [1 favorite]
I am seriously having emotional regulation problems that are entirely my fault, and my responsibility, and are ruining my marriage and my wife's health.
You are not ruining your wife's health. You are helping her with her health every single day. I really think you ought to listen to the therapists that say she ought to meet you half way. For both of you.
posted by Ironmouth at 2:36 PM on October 23, 2013 [17 favorites]
You are not ruining your wife's health. You are helping her with her health every single day. I really think you ought to listen to the therapists that say she ought to meet you half way. For both of you.
posted by Ironmouth at 2:36 PM on October 23, 2013 [17 favorites]
cheekycheeky I suspect there is much advice here that is applicable to your situation, be that as it may the only way you are not going to get more people responding is to ask the mods to delete the post.. it's a rare thing but they may do so if you ask nicely enough.
But, for the record, nothing you've written in the followup negates the advice given.
posted by edgeways at 2:36 PM on October 23, 2013 [4 favorites]
But, for the record, nothing you've written in the followup negates the advice given.
posted by edgeways at 2:36 PM on October 23, 2013 [4 favorites]
Whoa whoa whoa. So:
1. It's okay for you to be under stress and to present that however you like
2. Unless I am WAY OFF here I don't think people are thinking all that stuff in paragraph 1
3. Why don't you deserve advice and support?
4. It sounds like you are kind of mean to yourself and it seems possible that maybe you are at a higher state of stress because it's exhausting being with yourself when you are doing that (no offense)
5. No one wasted their time otherwise they would have gone and posted on another thread. I hope in general you can accept others' support because I can't imagine how hard it would be to go it alone on all the stuff you're dealing with.
posted by mermily at 2:37 PM on October 23, 2013 [7 favorites]
1. It's okay for you to be under stress and to present that however you like
2. Unless I am WAY OFF here I don't think people are thinking all that stuff in paragraph 1
3. Why don't you deserve advice and support?
4. It sounds like you are kind of mean to yourself and it seems possible that maybe you are at a higher state of stress because it's exhausting being with yourself when you are doing that (no offense)
5. No one wasted their time otherwise they would have gone and posted on another thread. I hope in general you can accept others' support because I can't imagine how hard it would be to go it alone on all the stuff you're dealing with.
posted by mermily at 2:37 PM on October 23, 2013 [7 favorites]
Please take a look at this question I asked and the answers given. It's not exactly what you asked and not exactly your situation, but man oh man does your question feel familiar to me all the same. Best of luck.
posted by MCMikeNamara at 2:45 PM on October 23, 2013 [1 favorite]
posted by MCMikeNamara at 2:45 PM on October 23, 2013 [1 favorite]
Support group advice stands. If you were an alcoholic,a support group would help you with the alcoholism even if you, as an individual, had anger management issues too.
Same deal. You are a caregiver for a partner. This is a difficult thing to do and the mental health world has processes and strategies and resources that answer the needs of your situation. Your emotional regulation problems or a eczema or whatever other issues you have don't trump anything.
A support group is also an opportunity to relate to others who have similar day-to-day chores and frustrations.
posted by Lesser Shrew at 2:46 PM on October 23, 2013
Same deal. You are a caregiver for a partner. This is a difficult thing to do and the mental health world has processes and strategies and resources that answer the needs of your situation. Your emotional regulation problems or a eczema or whatever other issues you have don't trump anything.
A support group is also an opportunity to relate to others who have similar day-to-day chores and frustrations.
posted by Lesser Shrew at 2:46 PM on October 23, 2013
Let me respond to the follow up by offering, in the gentlest possible way, that you do indeed deserve every bit of support you are getting here, and every bit that could come to you through the services suggested.
I will reiterate my suggestion to read this book as a way to attain that emotional regulation. It'll get you there, one step at a time. You can do it.
posted by Sublimity at 3:12 PM on October 23, 2013 [4 favorites]
I will reiterate my suggestion to read this book as a way to attain that emotional regulation. It'll get you there, one step at a time. You can do it.
posted by Sublimity at 3:12 PM on October 23, 2013 [4 favorites]
I don't think people are misreading you. I think we all realize that feeling angry, hurt, and resentful are completely normal feelings to be having right now; that the toxic ways you're dealing with these completely normal feelings are the problem, rather than the feelings themselves; and that beating yourself up about how horrible you are is making things worse rather than better.
You need an outlet for dealing with the completely normal anger, hurt, and resentment you're feeling, which means a support group and a good therapist.
You need to lower your practical stress, which means finding help.
You need to lower your emotional stress, which means letting go of the Madonna-Whore - style self-image you've got going, which means giving up both the idea that you have to be a saint and the conviction that you're currently the devil. Neither of those is helpful to you or your wife.
posted by jaguar at 3:38 PM on October 23, 2013 [8 favorites]
You need an outlet for dealing with the completely normal anger, hurt, and resentment you're feeling, which means a support group and a good therapist.
You need to lower your practical stress, which means finding help.
You need to lower your emotional stress, which means letting go of the Madonna-Whore - style self-image you've got going, which means giving up both the idea that you have to be a saint and the conviction that you're currently the devil. Neither of those is helpful to you or your wife.
posted by jaguar at 3:38 PM on October 23, 2013 [8 favorites]
But the narrative I gave you is a toxic one in my head that honestly is one of the core reasons why I'm ruining my marriage and my partner's health.
Good gracious. Your original post wasn't toxic, but this sure is! Give yourself a break, this is not healthy thinking AT ALL. The questions you asked up top come across as normal for your circumstances, not a doom-and-gloom pity party.
The stuff you have described is stress-inducing, yes, but it's not the end of the world. You're not throwing things or abusing your wife! Bickering, even shouting, can be dealt with (see advice above).
You are not ruining your marriage; your marriage is suffering from stress that you and your wife are both feeling. To fix this, you really have to take care of yourself first, stop beating yourself up, stop with the unrealistic expectations of yourself.
I hope that you do read past your request for no further responses, because honestly your self-recrimination has to be as damaging to your ability to cope as any external stressors are.
posted by torticat at 3:59 PM on October 23, 2013 [12 favorites]
Good gracious. Your original post wasn't toxic, but this sure is! Give yourself a break, this is not healthy thinking AT ALL. The questions you asked up top come across as normal for your circumstances, not a doom-and-gloom pity party.
The stuff you have described is stress-inducing, yes, but it's not the end of the world. You're not throwing things or abusing your wife! Bickering, even shouting, can be dealt with (see advice above).
You are not ruining your marriage; your marriage is suffering from stress that you and your wife are both feeling. To fix this, you really have to take care of yourself first, stop beating yourself up, stop with the unrealistic expectations of yourself.
I hope that you do read past your request for no further responses, because honestly your self-recrimination has to be as damaging to your ability to cope as any external stressors are.
posted by torticat at 3:59 PM on October 23, 2013 [12 favorites]
Does your community have any program like Visiting Nurse, or any kind of Respite group?You need to have some 'me' time, away from your job and your obligations to your wife. Find help! Ask you wife's medical people if they know of any respite givers, especially free/tax-supported ones.
posted by Cranberry at 4:14 PM on October 23, 2013 [1 favorite]
posted by Cranberry at 4:14 PM on October 23, 2013 [1 favorite]
Hi cheekycheeky. You don't say where you are located, but if you are in the UK you are entitled to a Carer's Assessment from your local authority, which will determine the level of practical support (help with the physical caregiving tasks) and respite (time away from the person you are caring for) you are entitled to. You might also be eligible for Carer's Allowance, money from the government for you, as a carer. Your wife would also be entitled to an assessment of need of her own, and for benefits.
These things are entitlements here in the UK because caring is fucking hard. It is relentless, often hard physical labour, it takes time, and you love your wife so you want to do the best for her. In order to do so you need help - no one should have to do this on their own. Have you asked for an assessment from your local social services department? How do you know you're not eligible for assistance?
I know many carers, through my work and personally. To a person, they all feel as though it is their responsibility to take on this massive task alone, because it is their wife/husband/child/sibling and they love them. They all think this, until they burn out and realise that being a martyr is not useful to anybody. Get help. Get help now. You've already internalised your role as carer (as is clear from your follow-up) and you need help and time away to get yourself back. If there is really no formal assistance where you are you need to seek help from family, friends, your church, charities - you cannot do this on your own, and refusing to acknowledge that is bad for you and your wife. From your question it sounds as though you are considering leaving her as you feel you don't have any other option because you are not coping. This is not the case, help is available - use it.
posted by goo at 4:38 PM on October 23, 2013 [1 favorite]
These things are entitlements here in the UK because caring is fucking hard. It is relentless, often hard physical labour, it takes time, and you love your wife so you want to do the best for her. In order to do so you need help - no one should have to do this on their own. Have you asked for an assessment from your local social services department? How do you know you're not eligible for assistance?
I know many carers, through my work and personally. To a person, they all feel as though it is their responsibility to take on this massive task alone, because it is their wife/husband/child/sibling and they love them. They all think this, until they burn out and realise that being a martyr is not useful to anybody. Get help. Get help now. You've already internalised your role as carer (as is clear from your follow-up) and you need help and time away to get yourself back. If there is really no formal assistance where you are you need to seek help from family, friends, your church, charities - you cannot do this on your own, and refusing to acknowledge that is bad for you and your wife. From your question it sounds as though you are considering leaving her as you feel you don't have any other option because you are not coping. This is not the case, help is available - use it.
posted by goo at 4:38 PM on October 23, 2013 [1 favorite]
Stop. Stop. Stop. The response you just wrote non-anonymously is out of line, and I as a stranger on the Internet respect you too much to say such messed up shit about yourself, Cheeky Cheeky.
Your original question was well written and pragmatically articulated. Your non-anonymous response is ridiculous and exactly what you are trying to avoid -- spineless and self-pitying. No! Do not misrepresent yourself to yourself anymore and listen to the input being given you.
You are being a major obstacle to yourself in this situation because you are ignoring the consistent advice being given to you. When practically everyone and a few licensed therapists all agree on a few key points, that's your cue to listen! So listen. You are digging yourself into a ditch because of guilt and grief and you will fail yourself and your wife because of it.
Listen to what's been said. Reread the advice. Heed it. Stop making yourself out to be the bad guy -- because it's turning into a self-fulfilling prophecy and that is accomplishing 0% of what really needs to go on here.
A thousand hugs to you and your wife for braving this shitty time. You can do this. You can take care of your partner and not lose yourself in the process. You will get your needs met. Just listen to what's been offered to you.
posted by These Birds of a Feather at 6:07 PM on October 23, 2013 [16 favorites]
Your original question was well written and pragmatically articulated. Your non-anonymous response is ridiculous and exactly what you are trying to avoid -- spineless and self-pitying. No! Do not misrepresent yourself to yourself anymore and listen to the input being given you.
You are being a major obstacle to yourself in this situation because you are ignoring the consistent advice being given to you. When practically everyone and a few licensed therapists all agree on a few key points, that's your cue to listen! So listen. You are digging yourself into a ditch because of guilt and grief and you will fail yourself and your wife because of it.
Listen to what's been said. Reread the advice. Heed it. Stop making yourself out to be the bad guy -- because it's turning into a self-fulfilling prophecy and that is accomplishing 0% of what really needs to go on here.
A thousand hugs to you and your wife for braving this shitty time. You can do this. You can take care of your partner and not lose yourself in the process. You will get your needs met. Just listen to what's been offered to you.
posted by These Birds of a Feather at 6:07 PM on October 23, 2013 [16 favorites]
Look, even if you are a complete bastard, cheekycheeky, you still have this task that you have taken on of caring for your declining spouse (an oddly non-bastard thing to do) and it's too much for you. So in order that you don't crack up, get some help. Concrete hands-on, group therapy, carer relief help. Whatever you think of yourself, there is no psychic switch you can hit to turn into some cross of superman and Jesus. Stop looking for one and beating yourself up about not finding it. It doesn't help your wife to keep heaping coals on your head, even if you could empirically prove you deserve them. Get help.
posted by emjaybee at 6:32 PM on October 23, 2013 [5 favorites]
posted by emjaybee at 6:32 PM on October 23, 2013 [5 favorites]
Ok.
So you say you misrepresented yourself?
I could be inclined to take you at your word. Hey, I've had some borderline-type aquaintainces who would present similar stories, even though that wasn't the actual situation. I'm not saying that's the case for you, but we don't know what your case is, so I'll just throw something else in.
So what is the actual situation?
That you both have chronic health problems, you both look after each other, but that when you know she is having chronic pain, you get grumpy and you don't give her any slack, when she would do the same for you?
Or something else?
If it IS something like that situation, you've just given yourself a pity party, without acknowledging what it is you are doing that is actually contributing to the situation, and you'll do it the next time you get annoyed, because (if) your pride is too much to actually honestly admit your failings and ask for help. If you present yourself as hard-done by to all your therapists, and they support you on that basis, but then you feel guilt because you know you haven't honestly represented the situation, then you are repeating the pattern here. You need to honestly admit where you are fucking up when you are in one of these, accepting culpability moods, rather than just blaming your partner for everything when you need to vent, and shutting up when you don't.
Does that sound nothing like you?
If that isn't you, if you are taking on too much stress, and martyring yourself - why are you running away from this advice? If you keep trying to present the 'real story', and even when you present it in the best possible light, people are telling you it won't work, something has to give, maybe they are seeing something you don't want to admit. That doesn't mean you just give up until you can present it 'better' somehow (reminding me of the people I know in abusive relationships - when everyone gives you the same advice, what do you say?).
posted by Elysum at 6:46 PM on October 23, 2013 [3 favorites]
So you say you misrepresented yourself?
I could be inclined to take you at your word. Hey, I've had some borderline-type aquaintainces who would present similar stories, even though that wasn't the actual situation. I'm not saying that's the case for you, but we don't know what your case is, so I'll just throw something else in.
So what is the actual situation?
That you both have chronic health problems, you both look after each other, but that when you know she is having chronic pain, you get grumpy and you don't give her any slack, when she would do the same for you?
Or something else?
If it IS something like that situation, you've just given yourself a pity party, without acknowledging what it is you are doing that is actually contributing to the situation, and you'll do it the next time you get annoyed, because (if) your pride is too much to actually honestly admit your failings and ask for help. If you present yourself as hard-done by to all your therapists, and they support you on that basis, but then you feel guilt because you know you haven't honestly represented the situation, then you are repeating the pattern here. You need to honestly admit where you are fucking up when you are in one of these, accepting culpability moods, rather than just blaming your partner for everything when you need to vent, and shutting up when you don't.
Does that sound nothing like you?
If that isn't you, if you are taking on too much stress, and martyring yourself - why are you running away from this advice? If you keep trying to present the 'real story', and even when you present it in the best possible light, people are telling you it won't work, something has to give, maybe they are seeing something you don't want to admit. That doesn't mean you just give up until you can present it 'better' somehow (reminding me of the people I know in abusive relationships - when everyone gives you the same advice, what do you say?).
posted by Elysum at 6:46 PM on October 23, 2013 [3 favorites]
My vibe from this question is you are desperate to do the right thing, but things are so hard that you are also looking for a way out.
If you want to stay in this relationship, and I'll be non-new-agey and say that staying in the relationship is The Right Thing To Do, then you MUST find a way to make this relationship sustainable for YOU.
This is not about what's fair, it's about what's realistic. You need some things to make caretaking possible. Only you know what those things are. A support network that gives more practical help? Outside outlets where you can explore your own interests? Couples counseling where you can process conflicts?
Your goal should be (in my judgemental opinion) to stay in this relationship. And you CANNOT do this without more support for you. Think of caring for yourself as a way of caring for your partner.
This sound really, insanely hard. I feel for you and I'm pulling for you. Best,
posted by latkes at 7:46 PM on October 23, 2013 [7 favorites]
If you want to stay in this relationship, and I'll be non-new-agey and say that staying in the relationship is The Right Thing To Do, then you MUST find a way to make this relationship sustainable for YOU.
This is not about what's fair, it's about what's realistic. You need some things to make caretaking possible. Only you know what those things are. A support network that gives more practical help? Outside outlets where you can explore your own interests? Couples counseling where you can process conflicts?
Your goal should be (in my judgemental opinion) to stay in this relationship. And you CANNOT do this without more support for you. Think of caring for yourself as a way of caring for your partner.
This sound really, insanely hard. I feel for you and I'm pulling for you. Best,
posted by latkes at 7:46 PM on October 23, 2013 [7 favorites]
Oh man, I've got to tell you that my mom, who cares for my dad, has a person who comes by to help her clean and cook, and drive to doctors' appointments. She also has a person who comes by to help him bathe, and an physical therapist to help him exercise. She has a whole team of doctors and dr. appointments. My dad is in pretty okay spirits and has many friends and family call him. And I and my brother live close by.
And even with all that, I'd say that my mom is just making it in terms of managing her equilibrium. Because caring for a loved one is all kinds of god awful hard, and relentless unless you have regular breaks and all sorts of support of some sort.
Love isn't enough. Please listen to the people here - find support for yourself and your sweetheart. The way through is through reaching out to others.
posted by anitanita at 8:01 PM on October 23, 2013 [2 favorites]
And even with all that, I'd say that my mom is just making it in terms of managing her equilibrium. Because caring for a loved one is all kinds of god awful hard, and relentless unless you have regular breaks and all sorts of support of some sort.
Love isn't enough. Please listen to the people here - find support for yourself and your sweetheart. The way through is through reaching out to others.
posted by anitanita at 8:01 PM on October 23, 2013 [2 favorites]
latkes made me think, What were hoping -- in your heart of hearts that you'd never admit to anyone -- to hear as answers to this question? Was some part of you hoping we'd all say, "You're horrible! You should leave!", and was that same part of you hoping to feel relief at getting permission to leave?
If so.... that's ok. That's normal. That's nothing to be ashamed of. Any reasonable human being put in a position of major emotional and physical stress is going to wish, at least partly, to get out.
Feeling that doesn't make you a bad person. It makes you human.
I bet your wife feels the same way, too, at least sometimes. Either wishes to go ahead and die, or wishes you would leave, so that she wouldn't feel like a burden on you.
If so.... that's ok. That's normal. That's nothing to be ashamed of.
You are both dealing with really big major things. No one deals with really big major things without some degree of ambivalence. The trick is, you have to accept the ambivalence, mainly because it's likely the same part of your brain that tells you to run away from tigers and sharks. Running away from tigers and sharks is a good adaptive strategy, so we need to keep that part of our brains around; it sometimes sets off alarms, however, in situations in which we've decided it's best to stay. But it's totally ok that those brain alerts of "RUN!" are going off. You don't have to listen to them, and I suspect that if you admit them to other people -- your therapist, support group members, maybe even your wife -- no one will think less of you.
posted by jaguar at 8:10 PM on October 23, 2013 [7 favorites]
If so.... that's ok. That's normal. That's nothing to be ashamed of. Any reasonable human being put in a position of major emotional and physical stress is going to wish, at least partly, to get out.
Feeling that doesn't make you a bad person. It makes you human.
I bet your wife feels the same way, too, at least sometimes. Either wishes to go ahead and die, or wishes you would leave, so that she wouldn't feel like a burden on you.
If so.... that's ok. That's normal. That's nothing to be ashamed of.
You are both dealing with really big major things. No one deals with really big major things without some degree of ambivalence. The trick is, you have to accept the ambivalence, mainly because it's likely the same part of your brain that tells you to run away from tigers and sharks. Running away from tigers and sharks is a good adaptive strategy, so we need to keep that part of our brains around; it sometimes sets off alarms, however, in situations in which we've decided it's best to stay. But it's totally ok that those brain alerts of "RUN!" are going off. You don't have to listen to them, and I suspect that if you admit them to other people -- your therapist, support group members, maybe even your wife -- no one will think less of you.
posted by jaguar at 8:10 PM on October 23, 2013 [7 favorites]
Hi all. OP here. I am mortified that I posted this exaggerated, self-pitying version of what's going on. You're all so nice and caring, and sympathetic, but I am seriously having emotional regulation problems that are entirely my fault, and my responsibility, and are ruining my marriage and my wife's health. Yes, it's a tough situation to be in, but the post comes off like "poor me, i'm so messed up from taking care of a sick person," which is self indulgent, ableist bullshit. It's insulting to you for me to take this posture (which I wish to hell I'd noticed when writing it... always preview, always think twice...) and then solicit advice and support that i don't deserve.
Hey there! Do you spend a lot of time on radical tumblr, by any chance? Because all that beating-yourself-up-for-being-burned-out-and-having-feelings-when-you-Are-Not-Oppressed-At-All-Really stuff is straight out of there, and it's super toxic. You are not a college student from a rich family whining about how he has to run a few errands for his disabled mom - that's the kind of person who would merit the self-description you've given.
I'm going to be a little theory-oriented in this answer, because if you're at all like me, toxic political theory gets in your head and fucks you up.
It is not ableist to observe that disability creates problems for carers that can be pretty serious. It is not ableist not to center the disabled (or specifically your disabled wife) in every description of your experiences and needs. You are not writing about disability in general; you are writer about your personal experiences and needs. You are doing personal writing, where you are at the core.
Current identity politics (which I suspect are fucking with you) get at a lot of useful stuff, but they are radically individualistic. They assume that the purpose of politics is to grade and identify everyone so we all know where everyone falls on the privilege hierarchy and we can then decide who gets to talk about their feelings, claim oppression, etc. They tend also to be really reductionist - no matter what your specific circumstances, a given radical politics truism must be strictly applied, no exceptions, or you are a terrible person who is Participating In Systems Of Oppression.
This is bad! These are great ways of thinking when you're talking about heuristics for groups, averages, general principles for behavior when you don't have a guiding purpose - but they are shattering for individuals.
If you are someone who is a bit of a doormat, doesn't feel good about yourself or is in a vulnerable place, current rhetoric about isms, duty, who gets to have feelings, etc can be incredibly destructive. You have to turn that stuff off.
It can be really hard to stick up for yourself - and that's what you have to do. You have to stick up for yourself against whatever voices in your head are saying that it is politically bad for you to have needs and politically bad that you are not a saint. Those are not revolutionary voices. They are the voices of your childhood or your hard times in disguise. If radicals are pulling that bullshit on you in real life, they are not acting as radicals in that moment.
Yes, you do sound self-pitying in that post. And you know why? Because you know that you are in a pitiable and crushing situation but you feel ashamed to need help. The "self pity" that creeps through in your post is the good part - it's the part of you that wants you to live and be free of pain. That's the part that is struggling to be helped and loved in an intolerable situation - struggling against the part of you that is trying to be a plastic veneer revolutionary hero with no feelings.
Radical politics without love are shit. We don't need to love our oppressors, we don't need to love people who have hurt us - but we do need to love our imperfect comrades in their imperfection. You're talking like because you're not disabled and you're not [whatever oppressed category] you somehow do not need to be loved and part of the human community.
Also, congratulations, carers are an oppressed category. Not under radically individualistic youth-politics notions of identity, sure, but under any structural analysis. You're doing work that is too heavy for one person because capitalism wants to push the disabled and their families/friends to the side - y'all aren't being productive little worker consumer drones, so capitalism doesn't want to give you any care or support. You - not just your wife, but you. If you had the energy, you would be totally within radical tradition to organize - within feminist tradition, even, because it's basically a "wages for housework" situation. You are supposed to be a private family doing the work of reproducing labor for free. You're not, so you're being punished by our privatized, monetized system of human relations. You are not being ableist to be oppressed by an oppressive situation.
Every time I have ever said "but I can't have [feelings/needs/material support] from other people because their needs are so great and I can totally put up with whatever the situation is", I have discovered that whoa, actually I can get at least some needs met as long as I stick up for myself. And once I start sticking up for myself, the self pity goes away...because I no longer feel like a helpless thing whose interior life and selfhood are supposed to be destroyed in the service of the larger good. I no longer feel that I have to conspire against my own feelings and needs.
If you would like to discuss any of this from a specifically left angle, please feel welcome to memail me.
But seriously, you're beating yourself up like I used to - and I think I would have had a health collapse or some self-harm if I hadn't been able to dial that back.
posted by Frowner at 9:15 AM on October 24, 2013 [13 favorites]
Hey there! Do you spend a lot of time on radical tumblr, by any chance? Because all that beating-yourself-up-for-being-burned-out-and-having-feelings-when-you-Are-Not-Oppressed-At-All-Really stuff is straight out of there, and it's super toxic. You are not a college student from a rich family whining about how he has to run a few errands for his disabled mom - that's the kind of person who would merit the self-description you've given.
I'm going to be a little theory-oriented in this answer, because if you're at all like me, toxic political theory gets in your head and fucks you up.
It is not ableist to observe that disability creates problems for carers that can be pretty serious. It is not ableist not to center the disabled (or specifically your disabled wife) in every description of your experiences and needs. You are not writing about disability in general; you are writer about your personal experiences and needs. You are doing personal writing, where you are at the core.
Current identity politics (which I suspect are fucking with you) get at a lot of useful stuff, but they are radically individualistic. They assume that the purpose of politics is to grade and identify everyone so we all know where everyone falls on the privilege hierarchy and we can then decide who gets to talk about their feelings, claim oppression, etc. They tend also to be really reductionist - no matter what your specific circumstances, a given radical politics truism must be strictly applied, no exceptions, or you are a terrible person who is Participating In Systems Of Oppression.
This is bad! These are great ways of thinking when you're talking about heuristics for groups, averages, general principles for behavior when you don't have a guiding purpose - but they are shattering for individuals.
If you are someone who is a bit of a doormat, doesn't feel good about yourself or is in a vulnerable place, current rhetoric about isms, duty, who gets to have feelings, etc can be incredibly destructive. You have to turn that stuff off.
It can be really hard to stick up for yourself - and that's what you have to do. You have to stick up for yourself against whatever voices in your head are saying that it is politically bad for you to have needs and politically bad that you are not a saint. Those are not revolutionary voices. They are the voices of your childhood or your hard times in disguise. If radicals are pulling that bullshit on you in real life, they are not acting as radicals in that moment.
Yes, you do sound self-pitying in that post. And you know why? Because you know that you are in a pitiable and crushing situation but you feel ashamed to need help. The "self pity" that creeps through in your post is the good part - it's the part of you that wants you to live and be free of pain. That's the part that is struggling to be helped and loved in an intolerable situation - struggling against the part of you that is trying to be a plastic veneer revolutionary hero with no feelings.
Radical politics without love are shit. We don't need to love our oppressors, we don't need to love people who have hurt us - but we do need to love our imperfect comrades in their imperfection. You're talking like because you're not disabled and you're not [whatever oppressed category] you somehow do not need to be loved and part of the human community.
Also, congratulations, carers are an oppressed category. Not under radically individualistic youth-politics notions of identity, sure, but under any structural analysis. You're doing work that is too heavy for one person because capitalism wants to push the disabled and their families/friends to the side - y'all aren't being productive little worker consumer drones, so capitalism doesn't want to give you any care or support. You - not just your wife, but you. If you had the energy, you would be totally within radical tradition to organize - within feminist tradition, even, because it's basically a "wages for housework" situation. You are supposed to be a private family doing the work of reproducing labor for free. You're not, so you're being punished by our privatized, monetized system of human relations. You are not being ableist to be oppressed by an oppressive situation.
Every time I have ever said "but I can't have [feelings/needs/material support] from other people because their needs are so great and I can totally put up with whatever the situation is", I have discovered that whoa, actually I can get at least some needs met as long as I stick up for myself. And once I start sticking up for myself, the self pity goes away...because I no longer feel like a helpless thing whose interior life and selfhood are supposed to be destroyed in the service of the larger good. I no longer feel that I have to conspire against my own feelings and needs.
If you would like to discuss any of this from a specifically left angle, please feel welcome to memail me.
But seriously, you're beating yourself up like I used to - and I think I would have had a health collapse or some self-harm if I hadn't been able to dial that back.
posted by Frowner at 9:15 AM on October 24, 2013 [13 favorites]
This is listed as a Dating Bill of Rights, but I think it applies equally to marriages. You seem to be living up to all your responsibilities without exercising or enforcing any of your rights. This is a recipe for resentment. And in treating your wife as if she shouldn't have to live up to her responsibilities because she's sick, you're actually treating her as less-than-fully-adult, which I'm guessing is adding to her frustration, and which kind of plays into the idea that people with disabilities are child-like.
Pay attention to that list of relationship rights:
I have the right to:
Be treated with respect always
Be in a healthy relationship
Not be abused-physically, sexually, or emotionally
Keep my body, feelings, beliefs, and property to myself
Have friends and activities apart from my boyfriend or girlfriend
Set limits and values
Say no
Feel safe in the relationship
Be treated as an equal
Feel comfortable being myself
Leave a relationship
It's ok to insist that your wife treat you with respect. It's ok to set limits on what you can do. The two of you -- not just you -- have the responsibility for figuring out what other options exist to help bring things back into as much balance as possible.
posted by jaguar at 10:47 AM on October 24, 2013 [2 favorites]
Pay attention to that list of relationship rights:
I have the right to:
Be treated with respect always
Be in a healthy relationship
Not be abused-physically, sexually, or emotionally
Keep my body, feelings, beliefs, and property to myself
Have friends and activities apart from my boyfriend or girlfriend
Set limits and values
Say no
Feel safe in the relationship
Be treated as an equal
Feel comfortable being myself
Leave a relationship
It's ok to insist that your wife treat you with respect. It's ok to set limits on what you can do. The two of you -- not just you -- have the responsibility for figuring out what other options exist to help bring things back into as much balance as possible.
posted by jaguar at 10:47 AM on October 24, 2013 [2 favorites]
OP you might find the book Stand by Her helpful. The author's wife (and mother) had breast cancer. Today show interview here.
The sacrifices women caregivers make are just beginning to be recognized, and support groups, respite care, etc. are becoming more and more available for them -- but sons and husbands who are caregivers just aren't even on the radar yet. You need to take care of yourself. Even if you find the support groups in your area to be made up of women caregivers, join up and go to meetings and trade respite care and build a network of people who understand what you're going through anyway. It will help you be a better husband because you will not be immersed in this crucible 24/7/365. Everyone needs to breathe.
posted by headnsouth at 11:13 AM on October 24, 2013 [2 favorites]
The sacrifices women caregivers make are just beginning to be recognized, and support groups, respite care, etc. are becoming more and more available for them -- but sons and husbands who are caregivers just aren't even on the radar yet. You need to take care of yourself. Even if you find the support groups in your area to be made up of women caregivers, join up and go to meetings and trade respite care and build a network of people who understand what you're going through anyway. It will help you be a better husband because you will not be immersed in this crucible 24/7/365. Everyone needs to breathe.
posted by headnsouth at 11:13 AM on October 24, 2013 [2 favorites]
I can very much relate. The advice in this thread is great. Listen to it!
Taking care of a spouse in pain is NOT EASY.
You can't be a perfect caregiver because you're human.
You can't make her health issues go away, no matter how hard you try.
You MUST take care of yourself or you'll become an emotional wreck. Trust me on this one.
Feel free to memail me.
posted by luckynerd at 12:50 PM on October 24, 2013
Taking care of a spouse in pain is NOT EASY.
You can't be a perfect caregiver because you're human.
You can't make her health issues go away, no matter how hard you try.
You MUST take care of yourself or you'll become an emotional wreck. Trust me on this one.
Feel free to memail me.
posted by luckynerd at 12:50 PM on October 24, 2013
And, I want to doubly emphasise I was providing an alternative reading, which if it doesn't apply to you, please feel free to disregard. I am worried that you are treating this the same way as friends treat abusive relationships (You just don't understand! - When everyone has the same advice. Not saying it's abusive, but that it is a stressful situation).
To explain why went with that, I just had a couple of possible red flags (pink flags?) raise at:
"an argument that can last for hours" - with someone in a wheelchair who possibly physically can't get away or leave
(It is ok to leave to calm down, yes, people with dysfunctional patterns freak out at that [abandonment!], but tell them you still love them and stick to your boundaries [if you establish a pattern of leaving to calm down, and come back afterwards, they'll stop freaking out]).
and
"become resentful when an apology isn't accepted right away" - implying you have both done something wrong, but then get resentful when she doesn't instantly forgive you (is it that she doesn't forgive you, or still seems upset, ie doesn't emotionally switch back to happy right away?), which is, actually, doubly unfair. You aren't owed a happy response to an apology.
Anyway, so that aside:
*****
What I do to cope, when I was caregiver loved ones with mental illness.
- I get time off.
I HAVE to have time out. I spend at least a couple of evenings a week with close friends (arranged 'adult sitters'), and while I want to do fun things and not spend all my time venting, yes, I do vent.
Honestly? I have a couple of drinks (this is literally and honestly a couple of drinks. Don't go past that). I chill out, or maybe watch some trashy tv with them.
- Venting
With venting, I try and spread it out so I don't vent to the same person all the time, and I try and 'ratio' it, ie attempt to have at least a 4/1 ratio of positive or just fun chatting conversation to 'venting' conversation.
It's a silly, almost arbitrary rule of thumb I adapted from John Gottman's research that couples need to have at least a 5 to 1 ratio of positive comments to criticism (also keep that in mind with your wife?), and figured something similar with my friends might help them not feel burnt out by my burn out, and alleviate some of my worry that I shouldn't be 'burdening' them (it's not happening to them, and generally doesn't drag them down even a 10th of what it is me).
- Massage
I detour past the $10 for 15 min massage place if I know it will be a stressful evening. I can usually afford that even if I'm pretty broke. I have another friend who I swap massages with. If you've got an activity that will remove a bunch of stress (hot bath, swimming, jogging, masturbation) remember to use it when you need it.
- Doctors & medication
When I was heading into a very stressful period, I've actually gone to the Drs and said basically, I'm doing pretty well, but I need some benzodiazapines on hand, so that if I know I am heading for a screaming meltdown, I can take one and not, because if I do that around someone who is anxious and paranoid, we'll be looking at hospitalization for them (Dr knew the situation), and we just need to get through the next few weeks.
I only used about 5 a year of the 'take two a day as needed' type, but I have them on hand, often on me if I need it. And it's a bit of a talisman - "Can I calm down without them? Yes, because I know I can take them if I need to, and it comes to worst, and I'm not quite there yet". Just knowing I have an 'escape route' if absolutely needed, allows me to chill out, and be the calm grown up.
- Easy cooking etc
I have several healthy, 10 minute prep recipes, such as a bag of frozen stir-fry veges, with mince/tofu, with rice from a rice cooker, and frozen meals.
- Emotional First Aid
If you or they are starting to melt-down, or get irritable, go through this checklist:
Have you eaten some protein in the last few hours? Eat something. Carry small protein snacks (muesli bars are good) with you at same time.
Drink? Make sure you aren't dehydrated. Cup of tea is fantastic, because it is warming and soothing at the same time.
Medications? Are you in pain, or have medications been missed? Take ibuprofen for a headache, anti-histamine if you have hayfever etc.
Bathroom? Take a bathroom break, even if you don't really need it. (I know that sounds odd)
Clean? Wash your hands and face, sweep hair back if it's long. This can help re-establish emotional equilibrium. Have a full shower if you are actually unclean or cold.
Cold? Yeah, cup of tea, jersey, or a hot shower.
Only when your physical needs are sorted, should you approach anything that looks like it might be an argument. If someone is being grumpy, disregard it until physical needs have been met, at the very least.
- Cut other commitments
There is only so much you can do. Write down commitments, and figure out how to quit them. Worries about the future? List them. Choose a couple you will actually concentrate on now, and literally set an appointment in your calendar with a note that you will consider them again the.
(Personal example - Finding another job, a house, and buying a car to cut down transport costs. Decided to concentrate on the more urgent number two, and postpone the other two until house issue is sorted, giving me more energy to concentrate on one task).
posted by Elysum at 6:47 PM on October 24, 2013 [2 favorites]
To explain why went with that, I just had a couple of possible red flags (pink flags?) raise at:
"an argument that can last for hours" - with someone in a wheelchair who possibly physically can't get away or leave
(It is ok to leave to calm down, yes, people with dysfunctional patterns freak out at that [abandonment!], but tell them you still love them and stick to your boundaries [if you establish a pattern of leaving to calm down, and come back afterwards, they'll stop freaking out]).
and
"become resentful when an apology isn't accepted right away" - implying you have both done something wrong, but then get resentful when she doesn't instantly forgive you (is it that she doesn't forgive you, or still seems upset, ie doesn't emotionally switch back to happy right away?), which is, actually, doubly unfair. You aren't owed a happy response to an apology.
Anyway, so that aside:
*****
What I do to cope, when I was caregiver loved ones with mental illness.
- I get time off.
I HAVE to have time out. I spend at least a couple of evenings a week with close friends (arranged 'adult sitters'), and while I want to do fun things and not spend all my time venting, yes, I do vent.
Honestly? I have a couple of drinks (this is literally and honestly a couple of drinks. Don't go past that). I chill out, or maybe watch some trashy tv with them.
- Venting
With venting, I try and spread it out so I don't vent to the same person all the time, and I try and 'ratio' it, ie attempt to have at least a 4/1 ratio of positive or just fun chatting conversation to 'venting' conversation.
It's a silly, almost arbitrary rule of thumb I adapted from John Gottman's research that couples need to have at least a 5 to 1 ratio of positive comments to criticism (also keep that in mind with your wife?), and figured something similar with my friends might help them not feel burnt out by my burn out, and alleviate some of my worry that I shouldn't be 'burdening' them (it's not happening to them, and generally doesn't drag them down even a 10th of what it is me).
- Massage
I detour past the $10 for 15 min massage place if I know it will be a stressful evening. I can usually afford that even if I'm pretty broke. I have another friend who I swap massages with. If you've got an activity that will remove a bunch of stress (hot bath, swimming, jogging, masturbation) remember to use it when you need it.
- Doctors & medication
When I was heading into a very stressful period, I've actually gone to the Drs and said basically, I'm doing pretty well, but I need some benzodiazapines on hand, so that if I know I am heading for a screaming meltdown, I can take one and not, because if I do that around someone who is anxious and paranoid, we'll be looking at hospitalization for them (Dr knew the situation), and we just need to get through the next few weeks.
I only used about 5 a year of the 'take two a day as needed' type, but I have them on hand, often on me if I need it. And it's a bit of a talisman - "Can I calm down without them? Yes, because I know I can take them if I need to, and it comes to worst, and I'm not quite there yet". Just knowing I have an 'escape route' if absolutely needed, allows me to chill out, and be the calm grown up.
- Easy cooking etc
I have several healthy, 10 minute prep recipes, such as a bag of frozen stir-fry veges, with mince/tofu, with rice from a rice cooker, and frozen meals.
- Emotional First Aid
If you or they are starting to melt-down, or get irritable, go through this checklist:
Have you eaten some protein in the last few hours? Eat something. Carry small protein snacks (muesli bars are good) with you at same time.
Drink? Make sure you aren't dehydrated. Cup of tea is fantastic, because it is warming and soothing at the same time.
Medications? Are you in pain, or have medications been missed? Take ibuprofen for a headache, anti-histamine if you have hayfever etc.
Bathroom? Take a bathroom break, even if you don't really need it. (I know that sounds odd)
Clean? Wash your hands and face, sweep hair back if it's long. This can help re-establish emotional equilibrium. Have a full shower if you are actually unclean or cold.
Cold? Yeah, cup of tea, jersey, or a hot shower.
Only when your physical needs are sorted, should you approach anything that looks like it might be an argument. If someone is being grumpy, disregard it until physical needs have been met, at the very least.
- Cut other commitments
There is only so much you can do. Write down commitments, and figure out how to quit them. Worries about the future? List them. Choose a couple you will actually concentrate on now, and literally set an appointment in your calendar with a note that you will consider them again the.
(Personal example - Finding another job, a house, and buying a car to cut down transport costs. Decided to concentrate on the more urgent number two, and postpone the other two until house issue is sorted, giving me more energy to concentrate on one task).
posted by Elysum at 6:47 PM on October 24, 2013 [2 favorites]
The book that helped me be emotionally present for the person I was caring for even when things were depressingly frustratingly infuriating was "Loving What Is."
It seems hokey but it was both practical (giving me concrete steps when I felt things welling up in me) and emotionally moving. It's basically about relating to reality and not being controlled by your feelings of why reality is wrong and things should be different and people should be different, anger and injustice and bargaining. As reading goes, it's fairly concise and I found it kept me interested and engaged.
I think you might actually both like it and find it useful. Please at least give it a shot.
posted by Salamandrous at 10:33 AM on October 25, 2013
It seems hokey but it was both practical (giving me concrete steps when I felt things welling up in me) and emotionally moving. It's basically about relating to reality and not being controlled by your feelings of why reality is wrong and things should be different and people should be different, anger and injustice and bargaining. As reading goes, it's fairly concise and I found it kept me interested and engaged.
I think you might actually both like it and find it useful. Please at least give it a shot.
posted by Salamandrous at 10:33 AM on October 25, 2013
This thread is closed to new comments.
posted by desjardins at 1:19 PM on October 23, 2013 [5 favorites]