Thursday, July 10, 2014

As Iyanla says............

My pre-op vent......

"Call a 'thing' a 'thing'!" So says Iyanla Vanzant. She ain't wrong. You cannot treat an ailment that hasn't first been identified, diagnosed. This is as true in medicine as it is in life. So here am I, calling a 'thing' a 'thing'.

People want to be optimistic. We want to be hopeful but in reality neither optimism nor hope is a strategy. We can hope we don't get sick, but we have to eat right, avoid overindulging in alcohol and recreational drugs if that is to actually occur. We want to be 'height and weight proportionate' but for that to occur we have to eat right and exercise. Eating a 7 oz serving of beef and with a side of potato salad slathered in mayonnaise at nine p.m and hoping to lose weight is a nonsense and we know it. Likewise, being optimistic that we'll somehow - by magic maybe? - be able to navigate the additional costs, mental and financial, of long term care without a carefully laid and executed plan is equally a nonsense. I'm doing my very best to make it known that it's a nonsense but I don't know how much success I'm having.

Years ago, I warned my family that not making the necessary plans would have ugly consequences. I knew then that someone, somewhere along the line would need resources for health care and the resources wouldn't be there. What I didn't know as I was laying down my (apparently) prophetic word, was that the one to suffer would be ME. Honestly, this is laugh out loud funny. Laugh out loud. If this were a movie, we would turn away saying that the plot twist was too incredulous to be believed. We would smirk and say that the plot had 'jumped the shark'. Well, this ain't no movie and this is indeed the plot. No sharks have been harmed in the making of this film, lemme tell you.

merry go rounds photo: WEEEEE buddypoke4.gifThe evidence abounds that something has been wrong with the way we've managed Mummy's care. It's the primary caregiver who's got to have surgery. It's the primary caregiver who's not been seen by doctor regularly in quite some time. It's the primary caregiver who hasn't been to a dentist in way too long. 

Look, I don't know with any degree of certainty that managing the whole differently would have yielded some radically different outcome but I do know that if we'd had half a plan, things would definitely not be as they are right this minute. Of that I am certain.

I haven't written in a while so I haven't had opportunity to beat my "buy some long term insurance" drum but I'm back now and beating that drum HARD. Let me say this one more time: make a plan. You're going to need it and as I've recently written, when you hop off the merry-go-round to care for an aging parent or handle other life business, there are no guarantees that anyone is going to slow the ride long enough for you to jump back on. Avoid the hop off (and the surgery for long untreated minor ailments) if you can. Make a plan.

Thursday, May 29, 2014


I've had a couple of Eureka! moments in the last few days. I thought I'd better write them down lest I forget them. The last thing one wants to do is to forget a good eye opener!

Epiphany un........
Long term care giving is like living in perpetual crisis. You roll from one 'event' to the next. And none of these events is a small thing. Doctor's visit! Dentist! Neurologist! Heart attack! Podiatrist! Stroke! Every one requires an exclamation point because, quite simply, when you're dealing with a patient with a chronic illness like dementia, everything else is an exclamation point on top of that. Nothing is just the cold. No, no, it's The Cold! Upper case T, upper case C, exclamation point.

That said, I realized today that it means that you're constantly in fire fight mode. This is no small nuisance fire in a trash can. No, no. This is a five alarm blaze burning in the nearby forest. Houses are at risk. Thousands of acres of pristine land are at risk. Lives and livelihoods are at risk. Critical habitat is at risk. And the fire is raging on. Weary, both in mind and body, you ply your hose but nothing beats the blaze back. You simply fight and fight. Until it wins. 

For those incapable or otherwise ill-suited to the task of fire fighting, weariness comes early and we curl up and admit defeat. We allow the flames to overtake homes and char lands, accepting that we are simply not up to the task. We'll deal with the consequences of our early defeat later. Much, much later. Maybe never. Maybe we'll be able to pretend there were no consequences? Yeah, let's try that!

For those with more in reserve, more pith in the belly, we battle on and on and on. We may score a few wins along the way; we may save a few houses; save a bird or two; win a few battles, but ultimately we lose the war. So it is. There's less cleanup in this second scenario, but there's still loss and mess to be addressed later and let's not even talk about the inevitable rebuilding that must occur.

Epiphany deux.....
The cost of this battle is tremendous. I've managed to make it until today, six days before my surgery, without shedding any tears or blaming anyone for my plight or even getting angry. The reality is that crap we've done has put me in a bad place. Terrible choices I've made (to wit, putting my mother first) have compounded the sin and the total absence of a real plan well, that didn't much help. Can't do anything about it now. The price simply has to be paid. If I could avoid payment, Lord knows I would, but that's not in the cards.

I'm filing this under the heading 'no good deed goes unpunished', shedding my tears, giving up yet another dream and leaving it at that. I'll tell you what though, when I make it out of surgery, there will be New Rules (à la Bill Maher). New Rules baby. New Rules. You can be damn sure of that. 

Epiphany trois.........
Change. Soon come. 

That's those New Rules I'm talking about. 

Saturday, May 24, 2014

The Freedom Train

Sometimes, the silence is deafening.

You think you don't need it, but surprise, surprise! being human, you do. You don't want to need it; you wish you didn't need it, but you do. And instead of receiving it (approval, gratitude, applause) there's just this deafening silence. Oh every now and again someone may throw a word your way, if you're lucky, but mostly there's just silence.

What I've learned over the last five years of caregiving and money managing and money manufacturing (usually by sleight of hand moves), is to applaud myself, to thank myself, to congratulate myself and hope that the Universe sees, knows and understands what I've tried to do. Truth to tell, I only learned the 'pat yourself on the back' trick in the last eighteen months.

I am not about to say that this is easy. I am not about to pretend that it's even enough but I do accept that I have to walk away from the expectations of appreciation. Maybe appreciation is felt, I don't know. Maybe there's no sense of what it is that's being/been done, so there's no belief that appreciation is necessary? Don't know. Maybe this, maybe that, maybe the other. Honestly, I do not know. Frankly, waiting to be appreciated is bad business and it may have caused me to do far more than I should have. You keep doing you see, or at least I did, in the vain hope that someone will notice and commend your efforts. Yeah, well we see how that turned out. Time to cut that loose.

I could wax on about the toxicity that feeling un- or under-appreciated will likely create, but there isn't any real need is there? That's the subscript here that we all know instinctively. It's well researched and documented somewhere....or maybe that's just me?

Some years ago, I tried to *help* my family by making moves to settle an old family estate. A long-dead relative's final will and testament had been probated by my mother and since I was now her legal representative, I thought "Hey, let me finish this up and settle this." Um yeah. Bad idea. Another relative, who didn't appreciate the direction I was taking, threatened legal action. Twice. For the first time, in all my doings, instead of silence, opposition was as loud as a thunderclap. It would be funny if it weren't so unfunny. At least I was assured that I wasn't invisible. I had begun to wonder.

Clearly, there are only two responses to the work some of us do: silence and roars of disapproval. I've had them both. I'm not sure which is better. What I've decided is that I'm going to do the best I can and I'm not waiting for applause. I know what I'm doing, I know what I've already done. I know how much heavy stuff I've already lifted. No one need applaud. No one need think I've shouldered the planet like Atlas. I know what I've done and I know the chaos in which I would now be standing if I hadn't. It's OK.

I think it's a sign of adulthood that I can stop seeking the approval of others. It ain't easy but it must be done. Next stop on this Freedom Train is saying "No. I'm not doing that." That's next. Stand by.

Harriet Tubman is alleged to have once commented that she would have freed thousands more slaves had they but known that they were. Message received Harriet! Now that I know myself to be enslaved by the need for approval and appreciation, I'm singing Marley's Redemption Song and "emancipat[ing myself] from mental slavery". Message received. Choo Choo!! This train is leaving the station.

Saturday, May 3, 2014

Eighty or bust

The other day, I was in Costco picking up a few things for my entrepreneurial endeavor. While there, I spied a gentleman with a dolly loaded up with what had to be the hugest TV I have ever seen in all my life. I mean the thing was enormous, eighty inches at the very least. I saw it, processed it briefly and went about my business. Clearly, it was a troubling sight because this morning, as I was again, about my own business, that image returned to me afresh. The insight (if you want to call it that), that I drew from the sight of a man and an eighty inch TV was just "Really?" followed by, the very judgmental "Meanwhile you ain't saving nothing for when you get old". Like I said, very judgmental.

I get (no, actually I don't get it, but I'm going to pretend that I do) the attraction of the eighty inches of television. For one thing, people like me are going to see you in the store driving your cart around and think something about you. Maybe some folk will be envious of your ability to buy an 80 inch TV. Maybe some people will assume you have a home theater that actually has room for such a monstrosity (sorry, judgement again). And then there was me, probably the only person immediately wondering if we've learned anything from this last vicious recession and the need to be judicious in our spending. I shudder to think that we haven't.

There is nothing wrong with retail therapy. Again, I'm saying that but I don't really believe it. Retail therapy has both its place and its people. Food therapy likewise has got its place and its people. Both also have their consequences. As a proponent of food therapy, I understand this all too well. I am also a proponent of 'workout therapy' to compensate for the ill effects of said food therapy. Just to be clear.

I was reading recently that perhaps as many as 85% of Weight Watchers users/clients are repeat users. In fact, the business model for the various weight loss clubs and products is based on that one critical fact. Yes the product must work, but far more importantly, we who use it, must fail to apply the lessons permanently to our lives. It is this one fact that ensures that we will return time and time again. Something very similar is true with financial management or the lack thereof. If we get on the payday loan treadmill for example, we rarely if ever get off. If we get into the habit of swiping our credit card for minutiae - and neglecting to pay off the balance - one day we wake up to discover that we're piling new debt onto old and paying copious amounts of interest on all of it.Whether it is as catastrophic as payday loans or just carrying a large credit card balance, the effect is the same: financial treadmill.

For me, the thing that really saddens me with Mr 80" TV is the greater issue: the long term plan. Are we preparing for retirement; preparing for long term illness; building an estate which we can leave to someone else; building multi-generational wealth with the same eagerness that we rush out and buy 80" of TV or the latest i-product? My guess is no.

I understand the rush that shopping gives. It makes you feel good to have something new and fancy and let's face it, nothing beats that new purchase smell. Believe me I get it! I've felt the rush and enjoyed the smell a time or two myself. However, at some point, we've got to start thinking about the long term consequences of our buying/spending behavior. Whereas the long term consequences of our eating behavior are readily apparent, the consequences of our spending behavior are more private and perhaps more easily avoided. We can only pretend for so long that our clothes still fit. Likewise, we have to know when our budget and finances can no longer 'fit' the things we're doing. The question is: will we continue to live in denial?

I really wish we would all cast our eyes behind us for an instant. It is said that when you know better, you do better. That's true and not. We first have to decide we want to do better. Better is not a happenstance. Better does not fall out of the sky and hit you in the head. 'Better' requires real work. Eighty inches of TV doesn't strike me as being the route to better. And yes, that is a judgement. Or maybe not. Maybe it's straight talk?

big screen tv photo: Big Sceen TV DSC01598.jpg

When it comes to weight loss, 'better' is no carbs after 2 pm - so says Bob Harper; or working out 6 days a week for 45 minutes or more - so says Jillian Michaels; or no carbs six days out of seven. Something. Better requires effort and discipline and plenty of each. When it comes to financial dieting,  better starts with separating 'want' and 'need'. If we do that assessment, ain't no way an eighty inch TV is going to land in the 'need' column. I'm not saying you can't want it, I'm just saying ain't no way you 'need' it.

I will never say, "Live frugally to the point of extracting no joy from the money you earn". Heavens no! I think I'm pretty frugal and yet I manage to shop and buy one or two nice things for myself from time to time, I just try not to make a religion out of it. And when I'm doing some splurgy thing, I try to be sure that the 'needs' have been properly addressed. First.

Many of us have a great deal of financial rebuilding to do in this post-Great Recession period. Many of us are frustrated by how far back we have fallen and have perhaps given up on the idea of catching up. OK. Maybe it is nearly impossible to get caught up. So what? Does that mean we don't even try? Does that mean we just throw financial caution to the winds and find the nearest Bernie Madoff to whom we will hand our hard-earned money?

C'mon man! Wake up! Or as Samuel L. Jackson said in that Mellody Thomas ABC money matters documentary, "Wake the Eff Up!" Nobody said any of this was going to be easy but considering where many of our forebears (of all colors and ethnicities) started out, we have it significantly easier. Getting straight with our money starts with getting straight with ourselves. We know we don't NEED those massive TVs. We only bought 'em cuz the fellas is coming over to watch Pacquiao vs. Mayweather or some other such great event. If that's the case, couldn't we just rent the thing, watch the fight and give it back? Seriously. 

Thursday, April 24, 2014

Never more

"God will never give you more than you can bear". I've heard this before and I've wanted to write about it and haven't, until now.

There is a widely held view that God, the Universe, the Great Giver of Life, never gives us more than we can bear but that is so clearly not true.

Some years ago, there was a story in the news in the MD/VA/DC metro area, about a professional woman who, apparently overwhelmed by the responsibilities of caring for a son with a life long developmental challenge, did harm to both her son and herself. Neither of them survived. This was, I think, her goal. Obviously it was her goal. She wouldn't have done it otherwise. That's not the kind of thing that happens by accident.

Throughout the Great Recession of 2008 and in the post-recessionary period, we've seen stories nationwide, of fathers and sometimes mothers, doing terrible things to their entire families generally because they were carrying far, far more than they could bear and they had lost hope.

I understand why folk will say "God never gives us more than we can bear". I understand it completely but I simply don't believe it but you can if you wish. It just doesn't work with my understanding of God...not that I understand that much.

Life doles out what it doles out. It is entirely up to you how (or even if) you handle it. If you are lucky, and you have help - be it emotional support, another pair of hands or financial resources to pay for another pair of hands, resources to pay for therapy! - you might manage just fine. If you have none of these, but are especially resilient (lucky you!), maybe you'll manage just fine. If you have some support and just enough testicular/intestinal fortitude, maybe you'll manage just fine. The reality though is that it is not what is doled out in the form of the challenge, that determines whether you can manage, it is what was doled out to you in the form of internal and external resources that makes that determination. This is why I talk so easily now about making a plan and buying LTC and talking to family. The external resources I can help you with, the internal not so much.

beast of burden photo: 8-29-10 jackass1.jpgThe reality is that life will throw sharp pointy things directly at your head. There is no malice aforethought in it. That's just how life goes. What happens next, whether you are merely brought low or mashed completely flat; whether you are able to pull your cart or end up like brother donkey in the picture, depends entirely upon your level of planning and your level of resilience. I can't tell you where I am - brought low or mashed entirely flat; still pulling or looking like my friend in the picture, feet flailing - because I simply don't know. I'm still standing. I'm still singing. I even laugh sometimes, and tell jokes, so I guess that means I'm doing OK. Rest assured though, I'm not doing OK just because what was handed to me was no more than I could bear. That simply isn't the case. What I'm bearing now has been unbearable at times. It has recently become more bearable not because it's easier, but because I am finding my way to peace. I will not tell a lie. I wouldn't wish it on a most hated foe, but it is what it is and if I am to survive and be of use to the world once this journey ends, I must find a way to manage all that I carry.

My pastor friend is of the view that God does not send these terrible experiences to us. I believe that. The world is the world. Life is life. Life unfolds in complicated and sometimes unpleasant ways. All that we control, is how we deal with the things that befall us. So no, I really don't believe that "God doesn't give you more than you can bear". First off, whatever you're bearing didn't come from Him and second, history is littered with the stories of folk who just couldn't manage what was in their inbox. To mix my metaphors still further, remember that it was a single straw that broke the camel's back. Just the one.

At the beginning, the middle and the end of the day, I'm simply trying my best. I am muddling on and through. Where this is all going, the purpose of this grand adventure, I have no idea. I'm in it because I have to be. I manage by Grace and through internal resources I wasn't even aware existed. Could you? There's no way to know. But please let's not hide behind this notion that God doesn't give us more than we can bear. Whomever is handing out challenges is not in the measurement business. Your challenges aren't measured just for you, sized to be just big enough for you to wear them comfortably. Nope. It's not so. Challenges show up and you do the best you can and hopefully, prayerfully, you'll come out on the other side, still able to contribute to the world, neither mashed flat nor up in the air, feet flailing, no way to get down. That's my goal at any rate. We shall see what happens.

Wednesday, April 23, 2014

As the world turns

The thing with caregiving, especially long term caregiving, is that it just doesn't stop. I guess that's why the word 'long' is in the title huh? Family members get tired asking, they stop calling for follow up (or they check in once every many months), friends check in periodically or not at all because frankly, there are only so many commiserating noises one can really make.

I remember 15 plus years ago, when my grandmother was taking her final journey, saying to a girlfriend at the time that I just wanted a week off. "One week", I said, "to get some rest." But I knew, that if I got that week off, it would mean that the process was complete and I'd get a whole lot more than a week off. There are no breaks allowed in long term caregiving and even if you have enough help, which we certainly did at that time (I think there were seven people involved in giving that round the clock care, plus a cousin who is a nurse, who would come to check in periodically), there was still no let up. It's a never ending list of things to do.

If you've never done it, up close and personal, you can have no clue as to what it will take. Nor indeed, can you have any clue as to what your checking out may leave others carrying.

I recently read a sad story of a man who returned to his mother's home, to find his sister - the primary care giver - collapsed, dead in fact. In his posting, he mentioned that he had been 'having difficulty seeing his mother in that state'. I immediately wondered how that 'difficulty' had been manifest. Had he checked out? Had he rarely visited? Had he simply filled up his time with a thousand other very, very important things, leaving no time to visit with his mother or assist his sister with their mother's care? There are a good many ways to 'have a little difficulty'. Many of those ways involve checking out and staying out of the fray.

I don't know the gentleman and so I can make no claim about how he was handling his business. All I can say is that when there are those who are 'having difficulty' managing their emotions and the choice (because yes, it is a choice) they make is to step back, trouble ensues.

My mother always used to tell me, "When you say you can't [do something], it means I have to." It used to annoy me because she was right and because I really didn't want to be bothered. And now here I am, hoist with my own petard, as the Brits would say. It would be funny if I had the energy to laugh.

The thing with care giving is that it doesn't end because you're tired or you need to go to the doctor or you just don't wanna be bothered or you have other more pressing concerns, like looking for a job, or starting a business. The thing is that it's unrelenting. The thing is, as the brother mentioned earlier learned, it's also life-altering and in some cases, life-shortening. Research indicates that caregivers can expect a shortened life expectancy, about ten years shorter. While caregivers are busy caring - for others - ain't nobody caring for them. I wonder how much of that life shortening is consequent upon the anguish, anger, resentment and eventual resignation of having to beg for help? Or contingent upon the guilt you feel over the things you simply let fall by the wayside? Or the stress of knowing that the only thing you can let fall, is yourself? Meanwhile, the world keeps turning, blind and deaf to the caregivers' plight.

Never mind what anyone says, care giving is unnatural, because we are human and selfish, if we can, we skate and give as little of ourselves as we can get away with. Brotherman above has just found out that that only works for so long. Bodies give out. Spirits give out. And then what next? The world keeps turning. Care still has to be delivered. Maria Shriver's father had Alzheimer's Disease and yet it was her mother, the primary caregiver, who expired first. See how that works? She wasn't the first, she won't be the last. My Granny had two friends, Gladys and Editha. Editha had AD but it was Gladys who had a stroke and left 'Ditha to be cared for by others. That could have been 30 years ago. It happens. This is not new.

the globe photo: The Globe. Globe.gifThe thing of it is, giving care ain't fun, it ain't cute but it still has to be done. And then, once it's done, it must all be done again. And again. The world, you see, keeps turning. Case in point: Easter Sunday, Mother had another medical drama. She fell out of her wheelchair and went face first into a hard floor. One ER visit, replete with CAT scan and such like later, she was admitted to hospital for observation.

I spent 7 hours with her in the ER on Sunday, six hours in her room with her on Monday and three hours on Tuesday. It's Wednesday and I can do no more. It's my day of rest. It's nearly 1 pm EST and I'm still in my pjs. After five calls to the hospital, I've finally got an update. Once again, she didn't eat much breakfast, but otherwise, she's doing fine. I suspect she'll be released tomorrow. An hour after I made my calls, I get a call saying that they'll discharge her today. If I had the strength, I'd race up there to take her home, but I can't. I'm too weary. She'll have to suffer thru an ambulance ride because if I do it, I'll soon be taking an ambalamps ride of my own. I fear the outcome of my ride will not be as hers.......just sayin'. I'm skating on some thin ice, never mind how much time Jillian Michaels and I spend together jumping up and down. An ambalamps ride for me .... yeah let's just skip that if we can.

Meanwhile, the world keeps turning. The things I need to do to get myself back on track, they still need doing but they have to take second place to my role with Mummy. Better still, I have to figure out how to get them to share first place. No easy task that.

Long term care.'Long' is the operative word and 'care' has to be apportioned carefully, to both patient AND self. Good luck with that. If someone knows how to do it right, I sure wish they'd tell me. I'm clearly going about this entirely the wrong way. 

Wednesday, April 2, 2014

Songs My Mother Taught Me

There is a wonderful piece of music, Songs My Mother Taught Me, by Antonin Dvorak. The song is a particular favorite of mine for a number of reasons. It's plain lovely to start with. More than lovely in fact, it's quite wonderful and emotive. When well sung, it can bring a tear to the coldest of hearts. Another reason the song speaks to me is that it reminds me so much of my grandmother. Again, if you've read much of my blog, you know how hugely important Granny was to me.

Yesterday, I had a long talk with my student loan lender, the lovely SallieMae. I'm but 12 months from paying off my loans. First, let me pause to bless the name of Jesus because given how things have been these last many years, I ought to be deep in the hole not within shouting distance of the finish line. Unfortunately, given that the end is an immovable object, the payment has jumped up just beyond where my hand can reach. During the conversation, the agent suggested that I take a loan elsewhere (at higher interest rates) to pay off this loan. For longer than a nanosecond, I actively considered it. I know it's a bad idea, a very, very bad idea, but I considered it just to get Sallie off my back. But I would only be trading one monkey for another. Cue the song......

While I was considering it, I suddenly had an image of my mother doing precisely the same thing throughout my childhood and youth. Mummy often robbed Peter to pay Paul. It wasn't that she was a poor money manager, but rather that she had three children to care for, support only from her sister (mother of one of the three) and zilch from the father of the other two. Though she was a professional and making what, I suppose, amounted to a decent salary, it simply wasn't enough. Things were further complicated by the fact that we would not stop growing! The shoes, the clothes, the food! We wouldn't stop eating either. And then there were school fees (by choice, she sent us to private school) and the ballet, piano, swimming and karate lessons. We were expensive pickney. She never complained, but she spent a lot of time denying her own needs and robbing Peter.

Yesterday, as I briefly (but not briefly enough) considered my own robbery situation, I realized that this was a Song My Mother Taught Me, as the lyric says, "in the days long vanished". It's not a good song. It's a terrible, terrible song in fact. It's a song, I am pretty sure, she wouldn't have chosen to teach, but still, oops! there it is (isn't that a line from an old song?).

monkey on your back photo: Monkey on your back 040321.jpgI've decided against robbery. This time. I've decided against trading one monkey on my back for another because at the end of the day, I'm still the idiot walking around with a monkey on my back! I'm working on a parttime job that will allow me to deal with SallieMae in a more reasonable way, that is to say: just pay the daggone thing off. The notion though that I even thought about singing the old song I heard my mother sing for so long, is sad and frankly, it's a consequence of bad retirement and end of life care planning. With a better plan, I wouldn't have been an unpaid caregiver for nearly five years. Mummy would have been able to better afford the care she needed and I could have kept working or taken a job out of state. No point dwelling on woulda, coulda, shoulda, much better to focus on how not to keep singing the same song.

Y'all gon' start saying I'm shilling for some LTC company. Nothing could be further from the truth (though it would be the best work I could think of doing at this stage of my life, given what I know and what I've lived). Truth to tell, I'm shilling for your kids, your grandkids, your spouses and your estate. Make a plan. Please. Buy the protection you need and buy it now because frankly, these songs need to be retired. Please. I ain't too proud to beg (another old school song reference).

When you know better, you do better. If you've read this far, you can't say you don't know better. What happens next is entirely up to you.

Tuesday, March 25, 2014

Jesus, Jillian and the Easy button

This past week, my acupuncturist asked me where I had put my negative feelings about my mother and our history. The truthful answer is that I've simply had to put them away, far, far away, as I walk with her to her final destination. There really is no room for those feelings, justified though they may be, to coexist with the feelings of impending loss and my (somewhat desperate) need to love this woman unto death. Easy? Not hardly.

Last Sunday at church I had cause, during the sermon, to think that there really is no 'Easy' button when it comes to exercising one's faith, whatever faith that may be. The choices are always difficult. Perhaps, as we get older, and better at walking the talk, we make those choices more quickly, but they're still hard choices. Should I copy my neighbor's answer on the test or get it wrong? Pay someone to take the SAT for me or take my chances on what's in my own head? Take a few pennies from my employer or muddle on impecunious? Embezzle millions (à la Bernie Madoff) or invest clients' money as I've been contracted to do? Love my broken mother or hold on to my anger? The challenges start almost as soon as we get out of the womb, and it doesn't appear that they stop before we return to the dust. So it is. Easy? Ha!

As I was working out the other morning, doing my favorite Jillian Michaels' DVD (and grunting), I realized that there isn't an easy button for working out either. Somewhere on that DVD, Jillian reminds me/us to think about why we're doing this thing at all. "This is where," she says, "you're starting to get tired. Remind yourself why you bought this DVD in the first place." Every time we get to this point, I ask myself "Why did you buy this DVD?" I still do  not have a good answer, but I muddle on all the same.

I'm a huge fan of Jillian Michaels' and her workouts. Yes, she can be a little shrill, or is it snarky? Whatever it is, most of the time, I'm usually far too busy sweating and grunting to notice her tone. I do the workouts, I enjoy the physical discomfort they bring and ultimately, I enjoy the changes in my body. The workouts are not easy but then if you want the results she promises, 'easy' is not likely to be the path to get to them.

easy button photo: easy button ab6.jpgI'm equally a fan of Jesus and the behavior he modeled. As with Jillian, if I'm looking to get the best results, I've got to be diligent about my 'practice'. The behaviors I choose in every instance have to be consistent with what I say I believe. None of this is without significant challenge. Take for example, the recent death of Fred Phelps - the founder of the Westboro Baptist church. As a person trying to reflect Jesus in my daily life, that means that I have to take the high road, even when the low one looks so much better. Easier. I have to pray for the comfort of his family and the peaceful repose of his soul. That's the Jesus way. It certainly ain't the easy way.

As regards my mother, well, the same non-easy route is required. In answer to the question of what I'm doing about my negative feelings in the present context, the answer remains "Nothing". I've tucked those feelings away, far, far away because that's what the circumstance requires. Is this healthy? I've no idea. Is this the right thing to do? For me yes, for you maybe not. Mayhap, by the time we get to the end of the road, the anger will have melted away and something new will exist. That's my prayer. If that's not what happens, well, me & Jesus will have to deal with it then.

If there's an easy button out there, I sure wish someone would direct me to it. Thus far, I haven't found it in my Jesus walk, my Jillian walk or my Alzheimer's walk. Maybe it's out there in some place where I ain't walking.

Friday, February 28, 2014

Benign neglect

I haven't written in forever. Forgive me, I've been trying to restart my life. I've discovered, as I suppose every woman or man who has taken time out to care for self, parent or children, it ain't as easy as it should be or as we'd like it to be. In the midst of all that, I've run into a minor snag with my health. It really is a smallish thing but it's a thing nonetheless and that caused me to think about how long I've gone without even as I've been ensuring that Mummy never did. 

It is all too easy to neglect yourself when you're a caregiver. Indeed, it's de rigueur to do just that. The trouble is, unless you are mindful of the need to take time out for self-care, or you have family and friends reminding you to do so, trouble will come to you in the long run.

Benign neglect is when you don't prioritize yourself and your health needs. Benign neglect is when others see you doing this and never ask, "Hey, if I offer to stay with your mother for a day, is there something you can do to take care of you?". Benign neglect is when people sitting right there in the front row of the theatre see the actor coming right to the edge of the stage and never say, "Watch out!" The neglect is 'benign' because there's no malicious intent (unless of course there IS under which circumstance it's a whole other thing), but it's still neglect, and benign though it may be, it still has consequences. 

Neglect is an ugly word. It has ugly overtones. It suggests, all by itself, that there's a willfulness, a wanting to cause harm, which is why I add the 'benign'. But as I've said often enough in the past, that you did not mean to kill me renders me no less dead. That you did not mean to neglect me, renders me no less neglected; renders the consequences no less real.

All of this, makes Seth Rogen's presentation to Congress yesterday all the more disappointing. It's not the Seth Rogen part, but the absent Senators part that's disappointing. I certainly appreciate Rogen's efforts and his sincerity. I appreciate the weight and focus that celebrity brings. What I don't appreciate is the empty seats on the other side of the table. What I don't appreciate is the unwillingness to make Alzheimer's Disease a real issue and a priority for this nation. I'm inclined to say that I don't get it, but unfortunately, I do get it. Unless we can find a way to 'monetize' congressional action, there's no drive for them to show up. Doesn't Pfizer have a product to sell? Oh then I guess no value here huh? /cynicism off/

Profit or no, there are real people, people with real lives experiencing real loss and the destruction of their carefully constructed financial and emotional lives, dealing with this thing day in, day out. We deserve your attention. We ain't asking for a buck, we're asking you to acknowledge that something really foul and evil is afoot and you, oh great congress, have a responsibility to deal. Or at least listen. That Senators paid with my and my mother's tax dollars no less, couldn't give a piss, is too much to bear.  

Hey, I get that our congressional representatives have many terribly important things to do. I get that. So do I. I gotta take supplies to Mummy's assisted living facility and I gotta get my blood tests done for my own medical travails. Trouble is, the only people harmed when I don't do what I should, are me and Mummy. When congress fails to show up, well, all of us suffer and their neglect ain't quite so benign.