One of the hardest jobs many of us will take on in our lifetimes is caring for loved ones as they live longer. The impact upon our careers will be increasingly significant. Balancing work, with your own health and busy lives can be a real challenge. CBC Radio One has a program in British Columbia called Radio West. You can listen to the April 23, 2012 edition as host Rebecca Zandbergen interviwed columnist Star Weiss to discuss the issue. The interview is very short but one point is hammered home: financial planning for elder care when your parents have complex co-morbidities will make your life as a family caregiver easier.
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.
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
Bi-Polar Caregiver’s Maxim #1: Virtually every article you will read about being a caregiver for a bi-polar parent will be useless because these are not action oriented.
This blog is being written by me to organize my thoughts as I struggle and muddle through taking care of my bi-polar parent when I’ve been doing it for far too long single handedly.in part because there is virtually no advice from anyone on how to do it. Consider these various studies and articles
Notice how none of these fine articles actually says anything. Sure, many of them are well-written and have their virtues, and I’ve not actually seen the raw data from these studies so I am not qualified to determine the value of these surveys, but for the most part these appear to be useless. Take a walk? Really? That’s your advice? To summarize them:
To put it more formally, this a prepositional tautology. In other words, you haven’t said anything beyond the initial statement. If that’s not clear, think of the Underpants Gnomes of the television satire South Park. If you haven’t seen it, the protagonists of this satire encounter magical gnomes who travel the world stealing underpants. The theft of these is the first step to becoming rich.However, they’ve forgotten what the second step is to be. ‘Phase 2: ?’has become a bit of an internet meme.
The mystery of why there is so little actionable stuff is a bit of a puzzle to me. I mean, why write an article that says nothing but there’s no end of unspecific ‘adjust your goals better’ caregiver non-advice on the internet.
I’ve figured out why most writing about caregiving is mush, but I’ll address it in just a moment.
Part of what I do for a living is help technology designers decide what they’re going to do and why. A huge problem in the tech industry is that people build stuff into products for no other reason than they can. In other words, many technology products make it to market as solutions with the vague hope of finding a problem. Ergo, I’m very well practiced upon helping people defining things precisely because I can’t provide an explanation to your end user if you don’t even know why you’re building the darned thing.
Therefore, as I try to sort my own agonies of being a caregiver to the bi-polar, I try to collate what little useful information is out there for caregivers of the bi-polar, and provide actionable advice. You’ll notice that each article I pen that is tagged ‘advice’ actually has something practical you can do. I have a theory as to why most caregiver advice is useless but I’ll get to it in a sec.
Coping may be thought of as practical or psychological. According to boffins*who study such things, caregivers who are problem focused have less burnout. Here’s an example of each. Recently my mother sold her house and, I’ll spare you the details, did the dumbest thing possible with her money. Do you:
If you feel yourself about to explode, ask yourself, ‘What can I do this second? Apart from dance a jig while holding a pillow over my bi-polar parent’s face?’ Now, it’s a hard thing for me with a philo degree to say don’t think, but I’m sure that when Socrates was on campaign against the dreaded Persians (how little things change) he knew that then was not the time to mediate upon First Causes. When in doubt, act.
I have found that virtually all articles about caregiving are useless because the articles address care burned out caregiver’s symptoms and not the cause. Hence, my advice articles always focus upon the practical. This is why virtually all compassion fatigue advice is uselessly generic. It’s about symptoms and not causes. Hence, there’s no relief since the ‘advice’ doesn’t improve predictability. Most caregiver compassion fatigue articles are useless because apart from your parent being embraced by the sweet release of death, there’s no solution apart from firefighting each foolish incident from now until the glorious day he or she dies or has the good manners to lapse into senility.
The caregiver is not a mechanic, not a physician or an engineer. You, as a caregiver are a fire fighter. Your job is to stamp out fires. You are always in reactive mode best you can do is set up systems to reduce how much fires can spread on their own, and their overall intensity, but you will not eliminate the fact you’ve got an arsonist permanently on the loose. Stress reduction is about eliminating how bad things can get, not their frequency or randomness. You get to be on permanent stand-by for action stations until the day your mentally ill parent dies.
This is why almost everything written to assist fatigued caregivers is generic pablum of zero use to anyone other than an unusually stupid child of ten or vice-president of marketing because the job of the caregiver is reactive and resistant to predictability. My efforts on this blog are to correct this.
Remember this: Save Your Self: The End Matters.
Here we stray into exactly the generalist rubbish that is the problem that makes virtually all writing about caregiving useless. Keep your eye on the larger picture. One day, there will be a glorious day when your obligations end. When in doubt, save yourself. Is your life your own, or will you sacrifice it for someone else who frankly doesn’t care? No! Save yourself. Fulfill your obligations to ensure that your bi-polar parent has her or his health well managed, finances in good order and other sundries met, but your needs matter.
When my dad was diagnosed with the pancreatic cancer that eventually killed him, my mother announced at a holiday dinner that her sister, who was visiting from nearly 750 KM away, should think about moving in with them, meaning ‘take care of me when my husband dies!’ Well, my aunt — a shrink, by the way — wasn’t about to give up her career to do that.
When my dad finally died, my mother expected me to quit my job and move in with her. The bi-polar parent has needs, sure, but if you have to choose between your needs and theirs, choose yours.
Let’em Fail, Properly
Thirdly and finally, mentally ill or not, we are all ultimately responsible for our actions. You must accept that they are too and you cannot keep them from repeatedly making nonsensical choices. In technology, we often discuss ductility. This is a fancy way of describing how pair shaped things can get before they break. Take steps to ring fence how badly your bi-polar parent can fail:
All of these things will reduce the amount of contact you need to have, and ergo, improve your own quality of life.
I’m not much for Dr. Freud’s ‘talking cure’ but, since there’s no-one else with whom I can talk, I’ve decided to tap away.
I’m the caregiver of a bipolar parent who has also been blessed with a tremulous disorder, and kidney disease. And, frankly, I’m at my wit’s end.
Several months ago, I had to have to get my phone company to block her calls to be because she was calling several hundred times per week. With the exception of her cousin who comes by once in a while to take her to on a shopping expedition, and once or twice-yearly visits from her sister 750km away, I’m it. I’ve an estranged sibling in town who I fear will clean my mother out if she could, but that’s a side issue.
My ability to cope with this constellation of issues, is increasingly limited.
Permit me to use an analogy.
Imagine a lake. Typically these are fed from inland weather systems that start on top of mountains and gradually accumulate in lakes and rivers before eventually making their way to the Earth’s great oceans. With the seasons, and with hot weather, the lakes dry and re-fill. Smaller bodies of water have a slightly precarious position. These often have marshlands around to act as sponges to help prevent evaporation during the dry periods.
If you repeated drain the lakes, the marshlands can help the lake recover, but the marshes need time to restore themselves. If you drain the lake again, before the ecosystem around replenishes itself, the lake will come back , but smaller. If the lake is repeatedly deprived this way, you eventually dry out the lake. It becomes, at best a river. It is no longer a reservoir that can replenish many, instead it becomes merely a conduit through which things pass.
This, I believe, is what happens to caregivers who become exhausted by their relations.
Dealing with geriatric bipolar patients with parkinson’s is, in my limited experience, agony.
I attended a group in my region, for caregivers of the mentally ill. After attending several meetings, there was a meeting where no-one else showed up, thanks to inclement weather. So, I had a one-on one meeting with the nurse who was our moderator.
‘Okay,’ I said. ‘Fire away. I’ve attended several meetings. You’ve heard me speak. Any advice?’
She skated around the matter for a but and then replied: ‘You need more compassion.’
I know I’ve no compassion left for my parent. This person has sucked all of that out of me over the last four decades. I was hoping for something I didn’t already know, but what do you want for free?
She seemed a nice person but full of generic advice of no use to anyone such as ‘take a walk’ or ‘try to do fun things.’ No wonder they have all of those ‘no violence in our workplace’ signs up in hospitals. I am not saying, however tempting, that the severely mentally ill should placed against walls and shot, never fear. But, I am saying that people who are forced into the role of psychiatric nurse will reach their limits. This explains why the severely mentally ill have lonely senior years.
Life is too short, after all and people start abandoning them.
So, this is a place where I will vent, rather than destroy another expensive phone. Don’t mistake me, I will be scrupulously fair and speedy in my duties to my mentally ill parent, but not at the cost of adrenal fatigue.