Tag Archives: Caregiver Burn-Out

Daughter allegedly pushes wheelchair mum to floor for ’52-years of sh*t’

First of all, there are details that are still vague, and naturally it must be underlined that there is merely a suspect in this case, but it appears that a woman pushed a 73-year-old woman from her wheelchair in Florida out of frustration.  Apparently the phrase uttered at the time of the incident indicates that this was the result of a process and not a particular event.

Please, please, please. Do not let yourself get into this state. Get help and, naturally, don’t compound your problems with drink.

A lifetime of anything is no excuse for elder abuse, assault, or criminality of any kind including elder financial abuse.


 

Boozy Florida woman allegedly tossed elderly mom out of wheelchair saying ‘for 52 years of s–t!’ 

Patricia Tavernier’s 73-year-old mother was reportedly found by a police officer lying in a fetal position in the street after Friday’s incident outside a Tavares restaurant, according to an arrest report.

© NEW YORK DAILY NEWS
Tuesday, May 27, 2014, 6:26 PM
Patricia Tavernier was out celebrating her 52nd birthday Friday when she allegedly dumped her 73-year-old mother out of her wheelchair, allowing her to hit her head on the cement.
LAKE COUNTY JAIL — Patricia Tavernier was out celebrating her 52nd birthday Friday when she allegedly dumped her 73-year-old mother out of her wheelchair, allowing her to hit her head on the cement.

An intoxicated Florida woman out celebrating her 52nd birthday allegedly dumped her 73-year-old mother out of her wheelchair while telling her, for 52 years of s–t.”

Patricia Tavernier’s mother was found by a police officer lying in a fetal position in the street after Friday’s incident outside a Tavares restaurant, according to an arrest report obtained by the Smoking Gun. A witness told police they saw the elderly woman — who said she had been living with Tavernier following hip surgery — fall and hit the cement head first.

Tavernier then went on to fight and hit her sister with a camera, breaking the lens, according to the restaurant employee’s statement to police. When the officer arrived they reported finding the women’s elderly mother, identified as Karen Judge, injured in the street.

A witness at this Tavares restaurant told police she saw Tavernier carry out the cut-throat act before getting into a fight with her sister.GOOGLE – A witness at this Tavares restaurant told police she saw Tavernier carry out the cut-throat act before getting into a fight with her sister.

Tavernier was arrested and charged with aggravated battery on a person over 65, which is a felony. She was also charged with misdemeanour battery for hitting her sister with the camera. She was booked into the Lake County Jail before released Saturday on $20,500 bond.

ngolgowski@nydailynews.com

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Full-length documentary on-line about bi-polar caregivers

Family Matters: Surviving the Bi-Polar Journey is a 2010 documentary film from Canada about four families, each with a bi-polar person. You can watch it on-line for free at the British Columbia Knowledge Network.

The film is by Marie Frymire. Family Matters follows four families as they struggle to support a loved one with Bipolar Disorder,one of the most commonly diagnosed mental illnesses:

Ted’s daughter Kristy,21,has just been told she has Bipolar Disorder. Both have difficulties accepting the diagnosis and the need to seek help. Theresa’s 27-year-old daughter Valerie was diagnosed several years ago. Now Theresa fears that Valerie might be repeating her own mother’s tragic struggle with depression. Melanie and Keith have been married 24 years and have two young sons. While Keith struggles with the most severe type of the disease,Melanie has been keeping the household together,sometimes by sheer force of will. Melanie finally begins to realize that the one person she’s forgotten to take care of is herself. Denise and Michael,married for 44 years and happily retired,are only now beginning to learn how Michael’s illness affected their daughter Samantha while she was growing up.

Learn more about the film.

Documentary Film — Family Matters

Documentary Film — Family Matters

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Video: Caring for mentally ill family members

The health show Tonic recently broadcast a segment on the difficulties of caring for relations with mental illness. Tonic is shown on the Australian Broadcasting Corporation network and covers health issues generally.

Tonic

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The Barometer

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.

The Typewriter

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Lessons from Running

Last year I was training through the pain until finally I couldn’t ignore my knee.

My left leg had no strength, and no matter how hard I trained, or rested, or iced, my pain-free distances got shorter and shorter. My left knee was a hinge with no power to it. Finally, I paid for an MRI and a visit to the doctor who was convinced I’d a torn meniscus.

‘Your knee is fine. No pathologies,’ the doctor said.

‘Well, that narrows it down,’ says I. ‘Send me to psych!’

‘Not so fast,’ my quack fired back, and ordered me to go see a physio therapist. I presented to the next doctor in my trainers and running kit. I explained the injury, lied about my mileage, and then underwent the physical exam. I was asked to stand, lean and pose like a model. Then I went on the bed and was put in yoga poses while being told to resist or push. When on my right side, with my left leg behind me, I was asked to raise my leg and resist as the doctor pushed my left ankle downwards with two fingers.

My leg collapsed.

The physician offered a witticism and we tried it again with the same result. I could resist very comfortably with my other leg probably because it is my dominant side.

I shall let you look up Iliotibial Band Syndrome on your own, but basically, my stride is not perfect. My instincts are to use momentum rather than muscle to swing my legs forward. This resulted in a atrophied gluteus medius, or lower arse muscle. The result was that the fibrous band keeping the leg apparatus in good order got too tight. It pulled my kneecap from its grove as my leg muscles got bigger. The treatment is trivial: I do leg lifts of various sorts to build up and recruit the unused gluteus muscles. This evens my stride and I am now pain free.

The lesson here is that working harder and longer can cause atrophy in some areas despite overall strength. I am proud of my knowledge gained through various caregiving experiences. I like to think that despite my impatience, it’s an ethical thing to do and hopefully it makes me a good person. Besides, the are worse things to be than useful.

But, doing the same things harder all the time may cause other parts of my life to atrophy and that must be guarded against.

Anatomy of ITB Syndrome

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Care and feeding

Last week my bi-polar mother was taken to the hospital after taking ill with pneumonia. She was out of it for the first day, and spent the night in the critical ward. The next day she started to be well enough to eat but was so weak that the food was at greater risk of ending on her Johnny Gown, so I picked the bowl and fed her the pea soup.

I felt an internal fog horn go off, the grim klaxon of duty. ‘Let’s just get this over with’ I thought, and began feeding her. At the second spoonful she remarked ‘You should try to do more for me.’

A few years ago, when my Dad was on his last legs, I groomed him and fed him all the while cheerleading him into the grave as the pancreatic blastoma ate his guts. I had a 359-degree blind spot about what was happening. However, this time, with my bi-polar mother sapped by the lung infection, understandably, not her fault but the thought that went through my head  was that she’s already used up more compassion than four people get in a lifetime. That aside, at the moment she flat out couldn’t eat and despite the years of acting like a manure spreader at garden party, that couldn’t be held against her at that moment. It would have been unethical.

The focus of these rants is to help me think aloud and I have been reading a lot about caregivers rights when tending to the mentally ill, but we cannot have any cogent discussion about rights without obligations. She needed to eat, and not assisting would have been cruel. Despite my occasional tendency to laugh in her face and tell her to ‘Fuck off’  you can’t sit on the fence out of exhaustion. If you’re exhausted, get help but the withholding of critical care — food in this instance — even though I’d be dancing if the Old Man’s Friend had come with a tighter embrace — would be unethical.

It was overwith in a few minutes. Sure an orderly would have done it eventually she needed the nutrition. And given her tendency to only want to eat sugary fruits, a bit of pea soup wouldn’t have killed her.

Of course, her remark that I should try to do more for her was childish. But, it was a reaction of helplessness. I remember once when my grandmother fell and in the immediate agony of the fall, manufactured a reason to blame the only other person in the house for the event. People do strange things when they’re prone with pane. Don’t hold it against them.

Remove Yourself from the Equation

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The Burned Out Care Giver’s Mantra: V.O.M.I.T.

Here’s a handy mnemonic to help you stay focused when caring for your bi-polar parent: VOMIT

Value / Obfuscate / Money / Ignore / Task

Value:

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?’

Obfuscate:

Practice lying sometimes. It’s a valuable tool for keeping your sanity. Examples include:

  • ‘We’ve a big deadline at work…’
  • ‘A friend is coming in to town and we’re meeting for lunch…’
  • ‘I’m already bought theatre tickets…’
  • Of course I care…’

A wee white lie to help you manage and schedule your many duties is well within the limits of ethical behaviour.

Money:
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.

Ignore:
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.)

Task:

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.

Your time is limited

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One size fits all — for the first quarter century

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?

No reason.

Just wait it out.

Why me?

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Article: Nurses and Compassion Fatigue

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.”

  • The point being for us family members that have no professional support, or formal training, that even the people who undertake broadly based caring as a profession get burned out.

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.”

Nurses and Compassion Fatigue

Nurses and Compassion Fatigue

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Article: The burden on informal caregivers of people with bi-polar disorder

This article, from Bipolar Disorders, reviews the burden on informal caregivers of people with bi-polar disorder.

Abstract:

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.

Authors

Ogilvie AD, Morant N, Goodwin GM.
Bipolar Disord 2005: 7 (Suppl. 1): 25–32. a Blackwell Munksgaard, 2005

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The Ambassador

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.

Practical Advice

  1. It may be that they haven’t been exposed to quotidian bi-polar behaviour. Explain that your mobile phone bill has gone stratospheric thanks to the hundreds of phone calls per month. People will think you are exaggerating so have specific numbers. ‘According to my statements, she called XXX times last month, and XXX times the month before that…’
  2. Tell the well meaning person that you are in contact with your relation once or twice a week in a schedule that better suits you; and the nursing home is free to call you.
  3. Assure the ambassadors that the needs and general administration such as banking and legal stuff, are being looked after.
  4. Expect ambassadors to come in the first month any time there is financial stuff, some trivial government letter or the like. Really, any excuse will be used. Other times to expect ambassadors are any time there’s a social calendar event such as the holidays or birthdays, religious feasts or critical life events such as funerals or emergencies like the sun is up or a dog barked.

The Ambassadors – Hans Holbein

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The Underpants Gnomes and Compassion Fatigue

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:

  • Burned out caregivers must cope better.
  • Cope better
  • By coping beter, you will cope better.

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 Underpants Gnomes — Phase 2:?

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.

Practical advice:

  1. Never think. Act.
  2. Remember a S.Y.S.T.E.M.
  3. Failure tolerance

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:

  • Scream and cry
  • Call her bank

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. 

S.Y.S.T.E.M. 

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.

  • If it helps lift your mood, practice writing your bi-polar parent’s obituary. It’s good fun.
  • Practice saying ‘no.’

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:

  • Get a mandate from the bank
  • Reduce the credit card limit
  • Have groceries delivered
  • Set up auto payments for bills

All of these things will reduce the amount of contact you need to have, and ergo, improve your own quality of life.

Forde OT, Pearlman S.: Breakaway: A social supplement to caregivers’ support groups. Am J Alz Dis. 1999;14:120–4.
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The Four Ds

My bi-polar mother fell again last night.

I found out after supper when the evening receptionist at her residence rung. She exited her flat without using her walker, and, raising her hand to wave to the receptionist, fell to the deck, rump first.

Apparently her arm was against the wall on the guard rail because as my mother fell, her arm stayed on the rail; thus her arm was wrenched backwards and upwards. This resulted in a sprain. Fortunately, she didn’t bang her noodle. The receptionist actually saw the fall so she gave the ambulance officers the exact chain of events. So, the ambulance came to take her to the hospital to get her wing under the radiograph. By the time showed up made my way to emerge, she’d been admitted. I  and stayed until quarter past midnight and was reminded of something that I’d meant to put in a blog entry.

The Four Ds.

My mother explained what happened in such a way as to make it seem as though her tumble was my doing.

I was 20 kilometres away at the time, and the receptionist had witness the event, but my mother, related the facts to imply I was blameworthy for her fall. Note that I don’t refer to it as an accident. I’ve bought her two walkers: one with wheels and a seat and another for good weather and each time she’s fallen, it’s because she’s gotten away from her walker. If she chooses not to use the tools provided, then it is not, according to my reasoning, an accident. Similarly, when I was a reporter, I never described a drunk driving crash as an ‘accident.’

Basically, as she reported how her fall happened, she kept mentioning me as a causative factor in each fact and point of timing. Every fact, point of timing and detail somehow mentioned me as the causative factor. She left her apartment because of me, because the digital photo frame I’d given her needed adjustment, but somehow it was implied I prevented her from using her walker and given the emergency (?), in a tangle of extraneous detail, the result was a strongly implied hint that I prevented her from reaching for the guard rail that acts as a bumper in every corridor of her residence.

I figured more in her long and winding narrative than she!

This happened as she was in the hospital bed as we tried figuring out how her arm got behind her. The pop-up rail of the gurney she was on was a bad prop because the angle was wrong so I offered to pantomime the way had her hand had been on the railing as she went down and didn’t let go, ergo, that’s how her shoulder got yanked. She used my efforts to recreate the movement for the doctor’s benefit as a means making it seem as though I was the cause of her fall by shifting tenses and mashing details. And, like a defrocked bishop in the dock before the prosecutor, followed up by pretending she wasn’t doing it.

The attending physician was well-practiced and managed to pick his way through the facts while I glowered and composed this blog entry in my cerebellum.

She’s done this before and she’ll do it again.

Deny, Defer, Demand and Deflect. These are her four tactics. She is never responsible for anything.

Liar

Update
This is not the first time she’s defamed me. She’s done it in writing and of course denies it. I can do without the stress of having to wonder if someone’s going to call the coppers on me for elder abuse, so I told her today that I’m not communicating with her until Labour Day. I have made sure she’s enough cash on hand in her bank account to pay the rent between now and then.

Her reply? ‘But I neeeeeeeeeeed you.’ Never I’m sorry. A few weeks ago she smeared her cosmetics on my car’s upholstery. When I explained that I’d need to clean it off, she changed the subject. Then ignored me. Finally, after much prompting, she said ‘Well, I’m stunned.’ When I pointed out to her that what I wanted was an apology. She repeated that she was stunned, adding that she couldn’t believe that she’d so such a thing. Finally, she said that she was sorry. Yes, four requests to get an apology.

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Article: Caregiving for the mentally ill starts in adolescence

A national survey of 1000 Australians has revealed the vast majority of relatives of people with a mental illness are suffering physically and mentally.  The report by the Wesley Mission has found many carers, especially young carers, are reluctant to ask for help because of the stigma associated with both caregiving and mental illness. The report is called Keeping Minds Well: Caring Until It Hurts.

You can also hear a quick interview from the Australian Broadcasting Corporation’s AM with Tony Eastley about this survey. According to their web site, the Wesley Mission  provides ministry to  ‘the vulnerable and marginalised. It includes the lonely, hurt and fragile, the homeless, mentally ill, aged, disabled, unemployed.’

Australian Broadcasting Corporation AM with Tony Eastley

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Practical Advice for the Bi-Polar Care-Giver

I’ve been to a number of events put on by social services to help families coping with the mental illness of a loved one or at least a family member. Social workers at community groups will give you generic advice, but it’s of no practical use for someone who has been run ragged by a bi-polar person for decades. For example, they’ll tell you to reduce stress and other paint-by-numbers advice, but nothing concrete.

I have distilled my experiences into the following. Keep in mind, I’m in my 40s, am unmarried with no children and am dealing with parent diagnosed with bi-polar disorder a long time ago and has been in treatment for it since; geriatric issues are slowly beginning to appear. Your own experiences and mileage will vary.

Image of man-made drain in a natural lake

Your soul in 20 years

Basically, you’re fucked

Why are you fucked? Because you’re the only one left. Your relations and your bi-polar person’s friends have figured out that life is too short to endure the agony of close contact with the person in question. You know what, maybe you can take some of their advice. The agony will end when your bi-polar parent slips into permanent senility or is in the sweet embrace of a casket. Until then, you’ll be dealing with an uncooperative paleologic tangle of need who will create an endless string of manufactured emergencies about random subjects between temper tantrums and periods of operatic self-pitying.

You don’t need to be in daily contact. If the person is capable of bathing, you’re fucked but not completely. To quote the great Admiral Nelson, ‘Desperate affairs require desperate measures.’ Don’t worry about what other people think as they are not the ones with their arses on the line.

What you need to do, is reduce the amount that your are fucked. Essentially, damage control. You are fucked in two ways: damage to yourself and damage the mentally ill person will to do him or herself. This essay covers some of each.

1. Control contact

Assuming the mentally ill person can manage bathing and other sundries, there is no reason to have daily contact. Print that and stick it on the kitchen door. You are in no obligation to be in contact with this person every day.

  • Reduce the amount of telephone contact
    If the person is a phone-a-holic, find out which mobile phone service will allow you to block calls that way you are in control of when you communicate and how often. I required this step myself and I should have done it years ago. My parent would fill my voicemail by lunchtime and if I deleted the messages she’d only leave more. Finally I arranged to have her inbound calls blocked but I needed to switch phone companies to do it. (I’ll return to this topic later.)
  • Reduce the amount of direct contact
    Contact shouldn’t be free therapy sessions. Instead, make your visits task oriented events such as the weekly shopping. Or have groceries delivered and have the task oriented visit tackle something else. This way, when the task is done, you and the mentally ill relation can part company and it’s been productive. This also prevents the ‘you don’t do anything for me’ complaint because that is specifically why you are there.

2. Ring fence the amount of financial damage the mentally ill relation can do to him or herself.

Contact the bank and have a reduced credit card limit on the person’s card to ensure that she or he cannot do much damage to the family finances. After all, unless you are buying a car or renovating a house, how much credit do you really need at a moment’s notice? Get the bank manager to sell the mentally person on a bank mandate. This will ensure you have administrative access to the person’s finances to a) monitor for irregularities and b) ensure bills get paid. I am suggesting that you get a bank mandate first because it’s an easier sell than a general mandate in case of incapacity. As you are no doubt aware, bipolar people have moments of incapacity and general times when they’re on the ball. The general mandate in case of incapacity is really the nuclear option and should only be employed in extreme old age. You should probably get one but it’s a separate step and it’s a big one; wait a few years.

Use your meeting with the bank manager to ensure any concerns about a cash grab by relations are discussed. There is usually one in the family tree. The bank should have some pamphlets about financial abuse of elders handy.

In my case, I’m dealing with a geriatric bipolar person and the bank was more than happy to have me take over for her. She was using the bank as her place to socialize. If your bi-polar relation monologues as much as mine, the bank staff will be overjoyed to help you and even arrange for a marching band to celebrate the event.

Obviously, set up automated payments for bills. If you’re not good with this sort of thing, the bank will help you with this happily.

3. Documentation

What ever bi-polar parent’s medical condition (i.e. any comorbidities), get the doctor to document all diagnoses on what ever certificates and forms they think best. Being able to wave a piece of paper under sundry noses can be very useful for obtaining various services from the various levels of government in your area. There are all sorts of classifications for medical conditions, and your bi-polar relation doubtless is on one or more of them.

Documentation is key. You never know what programs will be announced or  — in these days of austerity — cut. Having your mentally ill parent classified, named, stamped and certified on this or that form ahead of time may can be a good idea. As program spending is reduced, being the first one in line with a piece of paper documenting your bi-polar relation’s acuity may prove vital.

4. Ignore what social workers say and watch what they do, which will be nothing. 

Social workers are wonderfully adept at holding your hand and cooing sympathetically while doing nothing. If you’re a social worker and reading this, I don’t mean to sound unsympathetic, as I’m aware you’re dealing with finite budgets, but I don’t care about you, I care about the bi-polar caregiver who’s having murder dreams.

I’ll return to this theme in a later post, but if you want to get anywhere with a social worker, the best way is to never speak with them. If you speak to a social worker,on behalf of your bi-polar parent it’s game over however, assuming it’s not too late because some sort of process has begun, here’s what you may wish to do.

If you’re on a phone call with a social worker, and you get the feeling you’re being told that you’re getting nothing, stiffen your spine and actually ask direct questions to obtain unambiguous yes or no replies. Police are skilled into getting people to incriminate themselves by asking questions that result in practical confessions; similarly, social workers are very well practiced in saying ‘Tough luck, you’re on your own’ when making it sound like they’re doing you a favour and getting you to thank them for it. Ask questions like:

  • ‘I’m sorry, I don’t understand: can you tell me in 12 words or fewer the purpose of this call?’
  • ‘So, you’re telling me that you have a geriatric bipolar person who has mobility issues, and has had falls and you are choosing to risk incurring greater expense to the system, rather than provide a walker? Do I have that right? Can you give this to me in writing, please?’
  • ‘You’re suggesting I quit my job and go on social assistance to become a full time unpaid geriatric psychiatric nurse and abandon my children. Okay, please explain why I would do that?’
  • ‘We’ve established that this is a geriatric patient with diagnosis of bi-polar disorder, kidney failure and an undiagnosed palsy and I live an hour away. Your suggestion for her getting to medical appointments is that I take off five days of work per month forever. In practical terms, you’re asking for me to get fired, is this correct?’

Once you’ve shone a light on what they’ve said — that you’re being hung out to dry — ask them specifically what you can do to get on the other side of the decision line. I know I’m knocking the valuable and important work that social workers probably do, and I promise to make up for it in another post but my practical advice is to never assume that social workers will help you and certainly not immediately or with speed. (UPDATE – – Topic revisited in a follow-up post.)

As a side effect, sometimes due to a medical event, a hospital will call and say to pick this person up but stay with her the next 24/48/72 hours. When will they call? Friday afternoon. I’ll probably return to this subject in a later post but the ‘no’ word can work wonders here too. Remember, they’re past masters at getting you to agree to this sort of thing. (UPDATE – – Topic revisited in a follow-up post.)

5. Get the person into a supervised environment.

Should family members live together? Maybe, but don’t be guilt-tripped into it. Your life isn’t a Norman Rockwell painting so don’t pretend it is for the benefit of others. And certainly since you probably the last one left to deal with your bi-polar relation, it’s suspicious how few of your relatives seem to be jumping at the chance, eh?

Okay, now people have different levels of income and I cannot know what your financial situation is, dear reader, but there has to be some sort of environment where the bi-polar person can live, or live near. The reason is the worst thing that can happen is medication compliance issues. Getting the person into a location where meds are supervised is key. The latent assumption here is that your parent’s spouse is now deceased and that you’re the only one left talking to your bi-polar, geriatric parent.

Your own life matters and as I told a social worker: ‘If she moved in with me I’d move out.’ Like it or not, your long term goal: to get this person into a good environment with people her own age, and programs, and busses and social activities. If you don’t have the financial wherewithal to make it happen immediately, make this your long term goal; it may take a while to get onto enough waiting lists to get this to happen which is why documentation is so vital.

  • Use the ‘No’ word when people insist the bi-polar person be moved in with you. If they think it’s such a hot idea, they can go first.
  • Do not worry about what other people think.

6. Doughnuts and stamps

Seriously, bring sticky buns every once in a while — every three months for a senior’s home for example — in order to grease the wheels. Doubtless your bi-polar parent has been driving the staff  and management crazy. You’d be surprized how much a thing like this counts. They have hard jobs, showing sympathy and appreciation counts.

Once you convert a ‘tough luck, let us know how it works out’ to a ‘O, we did find some money under the seat cushions for that program,’ mail a thank you card to whoever got your mom or dad into that program. Seriously, no one does that any more. You’d be surprised how well that goes over. Moreover, call just to say ‘hi’ and two weeks after they’ve told you to fuck off. You never know what might get shaken loose the next time you call.

7. Never accept blackmail

People are generally reasonable but the universe looks very different to a mentally ill person. Basically, the world seems to operate on supernatural forces with no rules. So, the few things over which the bi-polar person have control, they tend to use like a stick. My mother refused for years to do a will as it was a club with which she could beat me. Finally, one night she rung me to say that she needed a soft drink and I should drive across town in rush hour because ‘I’m going to do my will soon.’

I replied: ‘Let me get this straight: you’re blackmailing me over club soda’ hung up, and didn’t return the next three dozen phone calls.

If you give in to black mail, the person won’t respect you. In my case, the mentally ill person was using the power of denial — a long time favourite tactic — to control. Any time she had a decision to make, she use that power to fuck things up for others ‘just because’. Well, don’t accept it. Call the bluff and hang up.

Your self-respect and sanity is not worth it. 

Pro tip: Blackmail regarding the mentally ill may not come directly from the person in question. Other relations may use it because they don’t want the, um, pleasure of the mentally ill person’s company.

8. Become a yes man

Agree with everything the bi-polar person says and then go ahead with what you were planning anyway. This was suggested by a friend who is a parent and, while it can be disrespectful and autonomy reducing, I guess it’s what dads and moms do sometimes. Not being a parent myself, I assume everyone with whom I am dealing is a rational agent. Wading through the sudden shifts in contradictory demands, I assume there’s a logical thread and what’s frustrating is that there is none. Of course, it’s maddening to me that there is none, and after several decades of this, you’d think I’d eventually learn but in my defence, I guess my instincts for logic are overly muscular.

Say yes, and move on and hope the bi-polar person moves on. Key to doing this, however, is to reduce the amount of contact so you don’t have to wade through a firehose spray of demands and end-of-the-world needs.

Say yes and move on. If asked why, say ‘soon’ or throw out an obfuscating delay like the pressures of work or your car sprained its differential or that your computer needs a new oscillation over thruster.

Summary

You actually have cards to play.

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A Marathon

Unneasy lies the head that wears a throne

— 1066 and All That

If you’re considering taking up running, there are worse books to have on the shelf than Tim Noake’s The Lore of Running. Somewhere in this monster of a physiology book, are some interviews with top marathoners opining that even the best of the best have, perhaps eight or fewer races at the peak of abilities.

Something gives out after that. They may be fine human specimens but, their conditioning can only generate so many high speed performances for 42 kilometres. There’s a reason why things are compared to marathons, but marathons aren’t compared to anything else. Soldiers sometimes say that every major engagement takes a few months off their old ages. And, each time a prime minister or president is elected, newspapers ask their artists to age the politicians to see what they’ll look like in a few years. (I’ve tried to find a Canadian news article covering the same material but none was to be found. I guess our dickhead politicians don’t go grey because pubic hair keeps its colour for longer.)

Ever notice how athletes often have grey hair? Research indicates adrenaline may be the culprit.

Hollywood tough guy Lee Marvin was mangled in a battle in WW 2. I wonder whether it was that which gave the craggy-faced actor his trademark prematurely white hair.

You may run into the term adrenal fatigue on various web sites but I’d advise a bit of caution because the term is not accepted yet. My advice is to avoid anything you don’t see on PubMed, or wasn’t published by a university in a G7 country. Lots of well-meaning people publish a lot of junk and call it science. The last thing you need, as the care giver of a bipolar adult, is to waste your time on placebos. The plural of anecdote is not data, but overdoing the adrenaline may be connected to intestinal complaints. As for myself, I’ve been responsible for the unadulterated full firehose of my mother’s mental illness since my dad died three years ago and, yep, I’ve been thinking about how long I can keep it up thanks to my marathon training books.

You will have back off at some point. The purpose of this blog is two-fold:

  • For me to get it clear in my mind.
  • And, vanity of vanities, think that what ever rubbish I say may help someone else.

Remember the marathoner — six to eight world-class races — and that’s it. If they can only run so many marathons in peak condition, there’s no shame in you not being able to keep up a high speed pace permanently either.

Lee Marvin

Actor Lee Marvin

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The day I understood unpleasant something about myself

I once read an interview with the actor I’d seen in a light comedy. He was now in a made for television movie based upon a news event about a mountie who murdered his wife. Playing a hero is easy, he observed, because you take the best parts of yourself and inflate them. However, when you play a murderer, he observed, you have to look inside your personality for the not so nice bits in order to give a convincing performance.

My mother was looked after hand and foot, by my father who was effectively her butler. When he died in 2008, I was left to absorb the full brunt of my mother’s bipolar disorder. I had some stuff in the basement  since i was between apartments at the time (long story) and, for the first time in about living memory, she decided to clean. This is a woman who didn’t know how to cook, or work the washing machine since her husband had done it all. She went through my belongings, took what she wanted and threw the rest out.

When she told me, I was two metres away. I asked why and her response was, and I quote ‘Look,’ she pointed like a judge at a trial, with a tone of anger and disappointment, ‘you have to get me club soda.’

I am loathe to admit it, but had I been a metre closer, her dentist would be a rich man and I’d be in prison, married to the man with the most cigarettes.

Fortunately, I did not knock her teeth out, but for the first time in my life, I could see how people can be driven to violence. Now, remember, this is after four decades of putting up with her. This is not the first datum on a chart; instead, that was merely the latest event on non-Euclidean plane. The attempt to pick a topic at random to reframe a conversation is her stock tactic. For example, if she does something unwise, and you point it out to her or ask for an explanation, she will, with the predictability of Newtonian mechanics:

  • Choose a subject at random
  • Make a demand on you regarding this subject, claiming that it’s somehow your obligation and you’ve done poorly and are somehow in arrears regarding it
  • Pretend it isn’t happening
  • Manufacture some sort of delay to kick the can down the road and hope you’re too stupid to notice

What I find difficult to express to people who have no long term exposure to the bipolar, is how decades of this behaviour wear one down. Unlike a work situation where, even if terribly inconvenient, you can actually quit; being a bipolar caregiver holds you captive. Yes, yes, I know that social workers and shrinks would disagree, but unlike them, bipolar caregivers cannot turn off their computers at the end of the day and walk away from their caseloads until 8:3o to-morrow.

The only reason…

The Only Reason…

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I started this shortly after throwing my iPhone against the pavement

Hello World:

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.

Burn Out

Burn Out

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.’

‘And…’

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.

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