Tag Archives: Siblings with Mental Illness

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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Video: Siblings and Adult Children of the Mentally Ill

Here’s a discussion about the siblings and adult children of the mentally ill with Mary Crocker Cook and Laura King. It’s a general introduction to the subject, and the adult children of the mentally ill parent can skip to the latter half of part two.

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Audio: Advice for newbies — Flush your expectations

This fifteen minute interview about caregiving for severely mentally ill relatives may have some useful advice for newcomers these problems.

  • Forget your expectations for the mentally ill person. Take any ideas about the potential for that person’s life and flush them down the john.
  • Forget your expectations for your family members. Don’t waste your time talking to family members about caregiving if they’re trying to distance themselves.

The interview is from Healthy Place, and features the expertise of a Cindy Nelson works part-time for NAMI Massachusetts and volunteers as a NAMI Family to Family Education Program teacher. She has been helping her schizophrenic sister for several decades.

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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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Audio: All in the Mind

All in the Mind is a BBC Radio 4 programme dealing with the limits and potential of the human mind in relation to psychology, neuro science, mental health and the law and is presented by the immensely bone-able Claudia Hammond.

You can listen each week on Tuesday, on demand or subscribe to the podcast. The archives in the first link is worth exploring as there are nearly 100 episodes on file. Three episodes may be of particular interest to you.

  • Schizophrenia  and caregiving — Tim Salmon’s son developed schizophrenia after college and the past twenty years have been a desperate struggle to secure him the care and support he needs. In this episode, Tim tells about the daily reality of living with this little understood illness and criticises the woeful inadequacies of provision in our society for those with mental illness.
  • Dementia — We don’t know the cause, there is no treatment or cure, and it is fatal. Dementia is the health challenge of this generation. This show also examines what is to be expected in the forthcoming UK Dementia Strategy
  • Siblings with Mental Health Problems — While parents often care for young people with mental health problems it can also raise issues for their siblings. They might have fears for their own mental health or worry about the change in their relationship to their brother or sister. How easy is it to share worries about your own mental health if you feel it’s minor in comparison to your brother or sister? And what of the future and the responsibilities you may one day inherit from your parents. Listen to hear about these and other issues.

BBC Radio 4 — All In the Mind

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