I started this web diary because I had no-one with whom to talk about being a bi-polar caregiver. I seriously have no idea how others cope but I have noticed one thing: when I start posting more, it’s because things are getting harder.
What’s your barometer?
Things are going easy now but my bi-polar parent was in the hospital recently in account of pneumonia; but even that was comparatively simple since it merely involved my stopping by after work daily and so in addition to being busy, there was little impact on me since I wasn’t having to anticipate things six moves in advance. I have noticed that things get hard when she is ‘control’ or at least has veto over something. The sale of her house was a colossal effort because every single thing that needed to get done was the end of the world. She’d periodically call people involved to cancel instructions or give strings of contradictory requests and orders clearly counter to her own interests. (Like remove the fireplace, thus devaluing the house. Great job, Mum.)
Things like managing her mother’s bank account are a source of conflict. She has power over her mother’s finances and every once in a while we need to do things like order cheques or move money about. Driving my mother to the bank results in a predictable drama. She gets out of the vehicle and then starts making demands, holding the process hostage for some out of proportion ‘reward’ like a vacation in some warm country or the like. She’s accomplished nothing with her life, so any power she does have, she swings like a claymore.
As that her house has been sold and her money locked away in investments where it’ll be hard for her to do anything foolish, I guess the next major point of conflict will be her will and mandate — again. She had a will but when I criticized her treatment of me, she wrote a libellous letter, full of invented incidents and half-truths and so it’ll probably not stand a legal challenge if my sister, the drugs-addicted stripper, decides to contest.
I’ve told my mother to shove her will up her arse; I shan’t be blackmailed because at 11 p.m., she’s decided I must drive across town to bring her an orange. Having been through the will process, and the mandate process, I fail to see why I need to take more days off work to certify paperwork that she’ll rescind the next time she gets in ill humour.
Another issue that has come up is tax time is when she is suddenly throwing her not inconsiderable girth about. She is suddenly in charge and demonstrates it though tantrums and nonsensical demands.
Back in the day when she was living at home, and her husband was alive, every family event was a fireball with plenty of secondary spot fires. Lots of engineered dramatics, basically I’d come stay in the kitchen, eat in silence, wash up and leave. Now that house finally sold, and she’s in a retirement home, her finances are regularized, perhaps a regularity will develop.
Still, if I am writing here a lot. It probably means I am on a short fuse.
Identify your barometer. For my father, it was alcohol, incidentally.
Here’s a handy mnemonic to help you stay focused when caring for your bi-polar parent: VOMIT
Value / Obfuscate / Money / Ignore / Task
The late Steve Jobs said ‘Your time is limited. Don’t waste it living someone else’s life.’ A bi-polar person will cheerfully suck up all of your life and demand more. Print this out and tuck it in your wallet: My time is valuable.
I don’t care what you do but your time is valuable.
You might be a captain of industry or currently unemployed due to the evils of the current recession. You have every right to make choices about what you spend time on. You are not obligated to become a full-time unpaid psychiatric nurse with unlimited duty hours forever simply because that person is a relation. If you find something of value such as working at your job, parenting your children or wanking to lesbian porn, go ahead and do it. Your caregving obligations must compete for your attention.Bi-polar caregiving does not autmatically go to the front of the queue.
‘But it’s family’ may be the phrase in your head that rings with Pavlovian precision. My reply is ‘And?’
Practice lying sometimes. It’s a valuable tool for keeping your sanity. Examples include:
A wee white lie to help you manage and schedule your many duties is well within the limits of ethical behaviour.
Money is a tool, nothing more. So, get some or use someone else’s. How? Apply for every government program you can to help you take care of your bi-polar relation. These are paid for through taxes and is there to be used if not by you, then by someone else.
Personally I have found this one the hardest because I try to be helpful.
I am guessing that were I a parent, I’d have learned this lesson much earlier than my 40s. I’ve not much experience with children, but from what I can tell, they talk endless rot. They clamour for your attention and once they have it, monologue about what is in front of them as though it was the wisdom of the ancients. Part of the process, I guess. I probably did the same thing and so did you; and parents, if you watch parents, pretend to listen.
This is a bit of a button pusher for me.
I find it maddening when interacting with my bi-polar parent, because my instincts are so strong to assume that an interlocutor is logical. Instead, train yourself to say yes to what ever is being said, and go on with what you were planning anyway, hoping that they change their minds or forget their latest idée fixe like those knobs in the marketing department. (Years ago, an editorial cartoonist named Gable scribbled an image of a person in therapy, except that the patient had struck a pose and was under theatre lights. Conversation, for the bi-polar, is so they can monologue to you, and it’s all about them. They don’t value you, so you must value you.)
Be task focused. Interactions should be about doing things, not just a block of time where you show up and hope to fill the time sensibly.
Reframe interactions so that events are about accomplishing a specific thing. For example, taking your bipolar charge out is a task; not socialization. Because, of course, socializing for that person is a one-way street where they monologue in sort of a one-way therapy session with no floor or ceiling as to their time or effort. So, take’em out, and explain that you have budgeted a time for this, and that time must be respected. Taking the person out is about shopping, or dining or some other accomplishment like a scenic drive up the mountain et cetera.
There’s an obvious exception to this; for a geriatric bipolar person living in a retirement residence, dinners out become welcome break to the monotony. Even then, since you’re actually the one making the event happen, you have some say in what the limits are for this. Explain that you have other things you need to do today and the time you have allotted to this is X.
Oh, and choose a noisy restaurant.
My birthday was Thursday.
Earlier this year, my bi-polar mother withdrew the power of attorney from me two weeks after I took two days off work to help her with it, and her will. Why? Because she was furious with me for daring to be incredulous when she said she was going to cancel her will and let it sit for several years until she was ready to do it. Of course, I found out that I had no power of attorney when I was doing her real estate transaction for her, with her consent and the buyer was there with the cheque. I didn’t get arrested for real estate fraud but as you can imagine, a two page defamatory letter coming from the fax machine claiming that I was a violent, and financially coercive criminal did very little for my mood.
You see, she’s accomplished nothing with her life so any power she has — be it a bank or tax form signature — she uses to deny.
She’s been driven to the bank to sign a paper for her mother and then begun throwing tantrums in other to make us play fetch for some unrelated matter ‘just because.’ According to the people at SHAEF, a submarine is essentially a weapon of denial. It denies you access to the ocean and fast transit. I think of her that way: the power to deny is her only power so she uses it wildly and inappropriately. My mother is a fantasist. If you relate a story, she will then begin telling the story as though a) she already knows about it and b) was there. I’m serious. Overhearing a story about my workplace manages to get told as though she was there and somehow involved. Pressing her on the point invokes her one of her limited arsenal of typical behaviours.
After her house was sold and her money was deposited in her account, I told her she was on her last bit of credit with me. I’m the last family member who has anything to do with her and she cannot expect that after four decades years, my patience is inexhaustible. Well, a few weeks ago she did something else and I nearly blew my stack. The best thing to do is separate and so I told her I’d see her after Labour Day but that’s difficult since she actually needs things like pin money and toiletries.
I told her I wanted no birthday present from her, not even a card so don’t waste the postage. She sent one anyway and I returned it to her when picking up this month’s bills. Needless to say, she had a meltdown because she wants to be good, blah, blah, blah. So I opened the envelope and fussed over the card, pretending to like it but refused the gift. I don’t know why it matters, but I really feel as though accepting that cheque — not a huge amount by any real standards — seems so symbolic at this of all stages.
I shall fulfill my duties. She’ll be well-cared for, her finances well managed for her exclusive interest, et cetera but that’s all.
Her cheque is in front of me I write. And now I’ve torn it.
Typically useless advice in ‘advice’ articles for compassion fatigue includes: ‘Some beneficial coping mechanisms include telling a friend how you are feeling; exercising; taking up a hobby; going for long drives; joining a support group; volunteering with a mental health organization. And, always remember to leave room for communication.’
This was taken from the coping with caregiver burn out section of a mental illness for family members.This is typical of the one-size-fits all advice you’ll get. There is nothing specific here that is of any practical use to the burned out caregiver. (Go for a long drive? Um, okay, with the practical effect of…? Moan again to my friends who are already sick of hearing about it?) Actually, I take that back. Those last two deserve special mention. Volunteering to work with a mental health group is a howler. The empty-headedness of that last one beggers the imagination. Why anyone who is already frustrated with one mental illness suffer would seek an even higher dose of the same is obscure at best. It might work for masochists, mind.
I also disagree with the last sentence about leaving room for communication. Communication with the mentally ill is effectively a one way enterprise. Do as you will but my strong recommendation is to elimnate any unneeded communication, and keep interactions task focused.
The audience for this blog is not the new family caregiver to the mentally ill, but the ones who’ve been at it for decades. Again, the reason why the advice one finds on caregiver web sites is generic is there’s basically nothing to do but grit your teeth and wait it out. Grow a thick hide and go for the ladders while avoiding the snakes.
A friend was born diabetic. Why?
No reason. She just is.
Why were you and I saddled with a bipolar relation?
Just wait it out.
Empathy scores of students in preclinical years were higher than in clinical years. Gender was a significant predictor of empathy, with women having higher empathy scores than men. Students preferring technology-oriented specialties had lower empathy scores. When career preference was controlled, higher levels of debt were significantly associated with greater empathy. Students with high baseline empathy decreased less than students with low baseline empathy during medical school. Students in traditional four-year medical school programs had higher baseline empathy than those in early pathway programs.
A non-technical and free summary of this survey is available from Psychology Today, along with a photo of George Clooney for you of the fairer sex. This summary links to a survey detailing a similar findings in nursing students when surveyed over three years.
Student empathy throughout medical school tracks lower as time goes by. (Subscription required.)
We examined the trend of empathy longitudinally; determined differences in empathy according to gender and medical specialty preferences; and determined empathy and career preference differences among students admitted through different medical school admission pathways.
The data for this study were collected using a longitudinal cohort design and included 2652 observations nested within 1162 individuals. Participants were medical students at a university-based medical school surveyed yearly from 2007 through 2010. Empathy was measured by the Jefferson Scale of Physician Empathy-Student Version (JSPE-S), a validated, 20-item self-administered questionnaire. Predictors of JSPE-S scores included gender, age, anticipated financial debt upon graduation and future career interest.
Self-reported empathy for patients, a possibly critical factor in high-quality patient-centered care, wanes as students advance in clinical training, particularly among those entering technology-oriented specialties. In the era of new health care policy and primary care shortages, our research may have implications for the medical education system and admission policy.
Daniel C. R. Chen, Daniel S. Kirshenbaum1, Jun Yan, Elaine Kirshenbaum, Robert H. Aseltine, Ab2012, Vol. 34, No. 4 , Pages 305-311 (doi:10.3109/0142159X.2012.644600)
Nurses, despite having psychiatric and professional training, can find themselves suffering from compassion fatigue, reports the Wall Street Journal.
According to a primer published last year by the American Nurses Association, compassion fatigue is “a combination of physical, emotional, and spiritual depletion associated with caring for patients in significant emotional pain and physical distress.” The nurses’ group says several different types of interventions, including workshops, staff retreats and counseling have been shown to help. And such programs may only become more important as demands increase on a shrinking supply of nurses, who shoulder the heaviest burden of patient care.
Lucia Wocial, a nurse ethicist at Indiana University Health in Indianapolis, tells the Health Blog that for nurses, compassion fatigue is often compounded by moral distress — the feeling of being unable to help a suffering patient or do what they feel is the right thing, such as withdrawing life support from a patient who won’t recover when a doctor or family asks for additional interventions. Wocial says Indiana University Health offers resources for staffers, such as a one- or two-day retreat to help them reconnect with the fundamental reasons they went into health care. “We tell them how important it is to rejuvenate, because you can’t take care of people unless you are taking care of yourself.”
While researchers agree more study is needed into the connection between compassion fatigue and patient outcomes, a 2009 analysis conducted by the Regenstrief Institute and Indiana University School of Medicine found that compassion fatigue was linked to decreased productivity, more sick days and higher turnover among cancer care providers. In numerous studies of the blatantly obvious, nurse turnover and understaffing has been linked to worse patient outcomes and higher mortality rates.
Thomas Lowe, health and safety representative for the New York State Nurses Association, began conducting workshops on compassion fatigue last year that use relaxation and stress-reduction techniques from programs including the Compassion Fatigue Awareness Project. Lowe says such programs could be incorporated into nursing-school curricula “to forewarn [nurses] this is something to expect.”
Compassion fatigue, he adds, can be compounded by an already stressful work environment, where nurses may be pulling extra shifts because of understaffing, and may face verbal abuse or bullying from colleagues.
At Barnes-Jewish Hospital in St. Louis, which is offering a day-long compassion-fatigue program for staffers, Lawrence Marsco, a 25-year nursing veteran who manages the leukemia and lymphoma floor, says the effort has sent a message to nurses that the hospital’s leadership is aware of the issues they face and is willing to help: “In nursing, if you are giving your heart and soul to caring for patients, it is very difficult not to be affected by compassion fatigue,” he says. “This is a way to bring awareness of the issue so you don’t turn into a nurse who is perceived as cold and uncaring, when in fact you are probably the most caring and compassionate nurse of all.”
This article, from Bipolar Disorders, reviews the burden on informal caregivers of people with bi-polar disorder.
Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregiversÕ experience of this subjective burden and objective burden as externally appraised. CaregiversÕ previous experiences of health services may influence their beliefs about the illness.
Caregiver burden is associated with depression, which affects patient recovery by adding stress to the living environment. The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar depression. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Several measures have been developed to assess the care burden of patients with depressive disorders, but may be inappropriate for patients with bipolar disorder because of its cyclical nature and the stresses arising from manic and hypomanic episodes. Inter-episode symptoms pose another potential of burden in patients with bipolar disorder. Subsyndromal depressive symptoms are common in this phase of the illness, resulting in severe and widespread impairment of function. Despite the importance of assessing caregiver burden in bipolar disorder, relevant literature is scarce. The specific effects of mania and inter- episode symptoms have not been adequately addressed, and there is a lack of existing measures to assess burden adequately, causing uncertainty regarding how best to structure family interventions to optimally alleviate burden.
The relatively few studies into caregiver burden in bipolar disorder may largely reflect experiences in the US Veterans Affairs health service, but the findings may be limited in their generalizability. Nevertheless, available data suggest that caregiver burden is high and largely neglected in bipolar disorder. Clinically effective, well-targeted and practically viable interventions are needed. However, services cannot be enhanced on a rational basis without an improved understanding and capacity to measure and target caregiver burden the impact of any change in services be evaluated.
Ogilvie AD, Morant N, Goodwin GM.
Bipolar Disord 2005: 7 (Suppl. 1): 25–32. a Blackwell Munksgaard, 2005
The fine folk at the policy journal known as Cracked Magazine have collected five tips for writing a funeral oration for someone you dislike. Someday in the future, everything you love and cherish will stop existing and you will die. Heavy, I know, but there is a silver lining to that oblivion cloud: The same thing will happen to your enemies, and with any luck, it will happen to them first. No one ever wins in life, but as long as you strive to be the very last loser, you may have the luxury of watching awful people fall around you.
I already know what I’m going to say at the funeral of my bi-polar parent. It’d be vulgar to use the event to get in the last word so I’ll be brief and stick to what she believes her greatest traits were, et cetera, and then dive into glorious generalities like observing she faced a variety of health issues over her life. A eulogy (from εὐλογία, eulogia, Classical Greek for “good words”) is a speech to say goodbye the recently deceased, not to quote the ending of Casino Royale, however tempting.
I managed to avoid ambassadorial games until I had my bi-polar parent’s number blocked. I call her every other day, but it was a necessary step to block calls from my parent’s telephone as she was ringing between half a dozen to 18 times a day.
Advice like ‘Just don’t answer’ sort of ignores the problem. A dozen calls a day is 360 calls a month and the total was often higher. They’d also come at all hours of the night.
My bi-polar parent loved voicemail. The maximum length of my phone company’s voice mail recordings was fifteen minutes. Yep, she’d often monologue for minutes on end, winding herself into a frenzy. Or she’d leave three or four messages in a row about end of the world emergencies such as ‘They’re sending me junk mail’ messages every afternoon when the postie made his rounds.
The following paragraph is from a reader’s book review about abuse and not bi-polar caregiving and how making the decision to reduce contact radically will suddenly cause the reappearance of estranged family members. I encountered a sudden spate of ambassadors shortly after I restricted her ability to contact me via telephone.
*Expect to be contacted through third parties. Your abuser will often enlist a friend or relative to approach you for her, and deliver news that she is ailing, depressed, getting old, sorry for all that’s happened, or whatever else she can think of to make you feel guilty and relent. The best response is to cut this right off at the pass, by informing the “ambassador” that he is not to convey any messages to you from your abuser or tell you anything about her. As soon as he starts talking about her, hold your hand up, palm facing him, and say, “Stop right there! I don’t want to hear anything about my mother, so let’s change the subject.” If he persists, enforce your boundary and end the conversation. When you do this, you are actually doing the Silent Partner a big favor. If he feels caught in the middle of your disagreement, now he can go back to the abuser and truthfully tell her that you refuse to listen to anything he says about her, and there’s nothing more he can do about it. This will get him off the hot seat and force your abuser to cross him off her list as a go-between.
Again, the context of that quote is estranged family abusers, not geriatric bi-polar relations for whom you are a caregiver. However, should you find it necessary to manage telephone contact, then you should anticipate the enlistment of ambassadors to run messages.