Tag Archives: elder care

The impact of caregiving on your career

The nice people at Linked In had a piece about what caregiving can do to your job and job prospects.

This piece is about elder care primarily, but the bottom end of the piece has ten points of advice that are worth considering. The very first is to tell your employer what’s happening. I’d qualify this because you really should always treat HR like the enemy but generally that’s good advice. Let them have some idea of what the floor and ceiling are so that colleagues can forecast how much to put on your plate and at what rate.

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Radio: Balancing life as a family caregiver

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.

CBC Radio West

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Family Dynamics and Caregiving

Here’s a tool for your toolbox.

I’ve mentioned previously that often the adult bi-polar parent is down to one caregiver — you. Why? Because everyone else has figured out that the ‘pleasure of his company’ is not worth it. That doesn’t mean that siblings and other relations won’t periodically swan in with directives, demands and decisions. Of course, what’s actually going on here is that they’re overcompensating. They’re pretending to themselves that they’re doing their duty and participating in care. From our perspective, it comes in as a barrage of unsolicited demands from someone who is implying we have a duty to report to someone who has no stake in the game or any idea what’s going on.

  • Maxim: Relations who are not doing the caregiving have opinions, not input.

If you get a heap of advice coming at you from out if the blue, copy and paste this video link into an  e-mail. To summarize, the family member who suddenly submits you to a heap of instructions like a Commisar can safely be told ‘Thank you for your input, but since I’m doing all of the work and you’re not, I’ll do it in order that best fits the schedule.’

Note the verbal judo there: ‘the schedule’ tells the person that things are underway that she or he doesn’t know about.

Watch out for phrases including ‘But she’s my mother too’ or ‘You’re not the only one in the family’ or ‘You’re not keeping me informed.’None of these phrases actually demonstrate a duty on your behalf to someone who shows up periodically to throw non-existent weight around.

If they person begins to throw a temper tantrum, keep in mind that what may actually be going on here is that the person is not really involved, feels guilty and wants to — perhaps for status reasons, ethical reasons or social reasons — look like he’s involved. The former is easier because you can convert them into useful labour. If they’re just showing up to boost their own egos in private conversation with you, or to build their own social capital by giving you grief in front of others, then all that is needed is one second of bravery to shut them down.

Advice:

  • If it’s guilt, honest blundering or insecurity – Give that person a specific but non medical task to do like taking the bi-polar parent to the barber or hairdresser, shopping or out to lunch. It’s not critical path stuff requiring long term commitment.
  • If it’s guile, status related or other nonsense – Pull the person to one side and ask questions like ‘Name any of her physicians,’ or ‘List her medications,’ or ‘Remind me what her last three medical appointments were,’ ‘Name her favourite nurse,’  or ‘When was her last pedicure’? This’ll shut ’em up.
    Asking those three questions in front of the family is the nuclear option. There is no need for you to escalate. Be mild at first and say that ‘I’m just respecting your track record: you’re not involved and have no interest.’ However, if the fool doubles down because he wants to score points in front of someone else, feel free to push the big red button with my blessing. You have enough faeces flung at you from your bi-polar parent, there’s no reason to also get it from your unhelpful relations.

The Pleasure of His Company – 1961

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The Friday File — Advice for Newcomers to Bi-Polar Caregiving

The caregivers of bi-polar parents that I know, and with whom I correspond, are generally helpful people. You wouldn’t know it from this blog but I do try to be helpful, considerate and enthusiastic and generous. Like any other feature of  your personality, it can be made to work against you.

This is a critical tip for newcomers which is why I am making it a stand-alone item despite being very short. I don’t want this to get lost in one of my lengthier articles.

Let us say that your bi-polar parent has been in the hospital for some reason, either for an episode, or because of a medical procedure. If the hospital calls on Friday afternoon, and says your bi-polar parent is ready to be released but you need to stay with her or him for the next 48-72 hours. Well, you have your own family, your own life and work situation.

  • The call will come from a blocked number after lunch
  • You will be presented with a statement implying your consent: ‘Your parent is ready for discharge. You’ll need to stay with your parent for 48 to 72 hours ….’

I understand if readers of this web site think I am hard-hearted but believe it or not, I do try to be a helpful soul but being the giving people we caregivers tend to be, you’ll say yes before realizing it. Look, I realize that governments need to cut back these days because times are hard and that I’m writing from the comparative luxury of a country with national medicine (sorry to our American friends) but ethically, given everything else you do, you’re allowed to use the ‘no’ word.

Practical advice:

If your bi-polar parent is in the hospital for a comparatively minor procedure, and it is Friday, expect a call from a blocked number from someone very, very, very, very well-practiced at getting you to agree to having you take your bi-polar parent into your home for observation. If you say ‘no’ the social agency officers will find a place for your parent. It may be in an irregular ward, but they’ll find a spot, don’t worry.

What are the ethics of this? Look, you are under no obligation to say yes to something astonishingly disruptive just because someone asks. Given everything else that I do, the ‘no’ word is probably one I should use more often.  I remember once I was giving a speech one evening and I got the call. They wanted to know what the speech was about and where I was giving it.

Prepare for the call on Friday afternoon. I am not you and you are not me so we’ll each handle it differently.

  1. If it’s not possible, use the ‘No’ word but be prepared to be on the phone with someone who has a lot of experience in getting you to agree. Have your answers ready. A white lie may be needed here (kids with the gastro, you’re on a trip and are already 400 km away, tell them you’re in the hospital yourself with the Lurgi, or you live in a tree.) Be warned, they’ve heard them all so have your explanation ready. Note that I say explanation and not lie. A legitimate reason to say no is exactly that.
  2. If you cannot say no, you just don’t have the personality for it, on Friday afternoon, do not answer the telephone if an unfamiliar or blocked number rings.
  3. Visit the hospital late at night after the discharge office is closed, after 8:30 p.m. is usually safe.
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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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