You: judge. Me: not having it

One outcome of taking the Road Less Traveled, is judgement.

I've written about judgement before and about what those judgements weigh but what I haven't delved into is from whence those judgements might emanate: who the judgers might be. At the time of writing "What judgement weighs", my thinking was that judgement would primarily come from without: from outside the fold, from people who had no clue and could therefore be (easily?) dismissed. Judgements from within the fold were to be expected but rarer because, presumably, folks with first hand knowledge of what was taking place would try a little harder to understand, if not agree with, the choices being made.

As it turns out, I was right and wrong - this seems to happen with alarming frequency. Sometimes, judgement comes from within the fold, from people who know just enough to be dangerous, or from people who know only what you've told them so far, but haven't the capacity to empathize. [This begins to explain the narrowing of my circle somewhat, and the continued posting of my innermost thoughts to a blog for the consumption of readers, some known, most unknown.]

I just had such an episode. My friend didn't intend to pass judgement, I assume. My friend didn't intend to suggest that my thinking was flawed and doomed to failure, I assume but both occurred. What irked more than the judgements themselves, was the temerity of the speaker to offer them in the first place. What disquieted me further, was that the doubts expressed mimicked my own. Hey, thanks for the vote of confidence, eh!

Get on the road with me, friend, this road with no pavement, no sidewalk, no street lights or signs; this road with heavy traffic but no rules; this road that runs to infinity and beyond. Get on this road with me; walk a mile or two with me, not in my moccasins but in your own, and then (and only then) judge me, not a moment before.




Copyright © December 2011 L.S. Semper

A Brief: My Experience With AD

I don’t even remember what year it happened, but I certainly remember how disconcerting the experience was – the first time my mother spoke gibberish. I knew what she meant to say, it was part of the nightly routine, and her gestures made it clear as well. But, there were no words, at least no English words. I don’t know how I had the presence of mind to respond as I usually did without displaying the alarm that I was feeling. The next day, I reached out to someone from the local Alzheimer’s Association, and she reassured me that my mother probably had no idea that her words were not coming out the way she thought they were. It was pitiable reassurance really – my mother was losing her ability to speak and didn’t even know.

Gibberish came infrequently at first, then more often than real words. It was a pleasant yet gut-wrenching surprise the first time she responded to me with a clear “I love you too” when I tucked her into bed one night. That doesn’t happen anymore. There is neither English, nor gibberish, nor a surprise mouthing of the words “I love you.”

No one in my family can really pinpoint when the first signs of the disease began to manifest. Was it after menopause in the early 1990s – they say that can trigger symptoms in some women? Was it after the brain infarct that caused her to pass out at work in 1997? Or, was it the trauma of her only child leaving the country to go school in Jamaica in 1999 that triggered the symptoms? Perhaps there was some underlying psychological condition that predisposed her to Alzheimer’s Disease (AD)?

We got the diagnosis in 2001, after I had left school in Jamaica, and while I was trying to wrap my mind around what life might now look like. I tried to go back to school in Trinidad, but that didn’t work out well. I was too distracted by the need to earn an income and manage a household to really study. Turns out that it was a good thing I left school (for the second time), because it was all I could do to keep up with the changes in my mother’s condition.

Her first seizure came in 2006. Scariest moment of my life! I am thankful to have had people in my life at the time that were willing to help with the myriad of things that needed to be done over the next few days while my mother was under observation in the hospital – not the least of which was getting her there in the first place. Auntie Sylvie was a God-sent!

I learned later that black, female AD patients are twice as likely to have an increasing number of seizures as the disease progresses. At least I was forewarned. They still scare me though.

I’ve grieved a lot, and sometimes I still miss my mother... and my twenties. But the thing I really regret losing is the opportunity to have a friendship with my mother. Throughout life we move from a parent-child relationship into the ideal of an adult-adult friendship. She and I never got to have that, so I will never know for myself the kind of person she was. I hear stories about the kind of friend she was, the kind of sister and aunt she sometimes was, acquaintances have almost uniformly used the word “pleasant” to describe her.

What I know without asking though was the kind of mother she was – a loving, caring, sometimes too engrossed mother who would sacrifice so that I could have everything I needed. Some people would say she spoiled me. Maybe. But it paid off, because after all that she did for me and gave to me, I have no problem giving it all back now.

My Road Less Traveled

There is a risk, in this passage I'm in, of 'leaning unto my own understanding', rejecting the advice of others because it seems so wrong and going my own way, taking a road less traveled. That's a result of speaking with folk who clearly don't get what this journey is about and who base their suggestions on 'normal' conditions. My conditions are anything but 'normal'.

Three or four years ago, before I did my crazy investment thing to create lifetime income for my mother, I was advised to sell Mummy's last remaining asset. The feeling was that we could put the money down somewhere, let it earn interest and pay her bills with that interest. Boy am I glad I didn't fall for that logic! Interest rates have been piss poor since that suggestion was made (between 1 and 5 %) so we would have been paying bills with capital not interest, and I long ago learned that money has a horrible way of running out just when things are starting to get interesting.

Just yesterday, a friend was making the same claim, going so far as to suggest that I'm holding on to the asset because of my sentimental connection to it. LOL! There wasn't enough time (nor indeed do I think I would have been believed) to explain that sentiment went out the door in August 2007 when the ER doctor diagnosed Mummy with dementia. My friend cannot understand what I am dealing with, what costs I am looking at long term or really, any of the challenges - financial or emotional - that are facing us. She has no basis for comprehension. I get it.

It occurred to me that I needed to be speaking with someone who had a clue as to the challenges. I need a community of believers or at least of 'similar experiencers' with whom to share my stories. It became clear that there wasn't much point taking advice from someone who didn't understand that in this case, 'money' is finite but 'income' is infinite. Selling assets sounded like good advice except, we're not dealing with an ailment with a specified duration. This is not a '1 - 3 years to live' kind of story, this is potentially a '1 - 3 decades to live' kind of story. Finite sums of money will not cut it. Money could all too easily run out before the disease runs its course.

I've mentioned before that my mother's biggest financial goal post-retirement, was to hold on to her retirement lump sum. She was somewhat successful in doing so, but she didn't manage to grow it one whit. At the end of day she had almost exactly the same amount as she had started out with. Given the realities of her income during the period, this is a huge victory, but it definitely isn't any great money management success story of the 20th century. If you factor inflation into the equation, she lost ground financially.

Experts on retirement recommend that retirees expend their resources at a rate of 4% per annum. I think that's based on the assumption of a retirement of about 25 years. After 25 years of retirement the funds are typically exhausted. Mummy's certainly would have been. Trouble is, she was diagnosed in the twentieth year of her retirement. Had she followed the 'rules', we'd have had very little left for the uphill financial battle that is long term illness. We would have been at war with neither troops nor ammunition. Fortunately, that's not what happened but many retirees spend far more than the recommended 4%, far more, and when things go awry, they have to try to wage the battle of their lives without the necessary resources.

So, I hear what folk say but I've determined I have to go my own way, especially if the folk doing the saying have no earthly idea (and haven't even bothered to ask) what exactly it is we're dealing with. I have to trust that my instincts regarding what to do and how to do it are right. So far, so good. As my sister said to me some weeks ago, "You haven't been wrong yet." Let's just knock on wood and keep following this 'road less traveled'.

I Evangelist

I wonder what it would take to get folks to believe me when I say that there IS a way to avoid creating a financial wasteland for self and family if chronic illness strikes? Would I have to say that I can figure out a way to triple or quadruple your income? That's not realistic and you and I both know it. But increasing your income even marginally can and does make a huge difference. Moreover, if you start early enough, a few extra dollars every year, compounded, can go a very long way. I hate the idea of just keeping my insights to myself and chugging along until this thing works out as I expect it to and then saying, "See, I toldya!". Many of us are standing on the sidelines hoping not to get old or sick, while both conditions are headed our way at break neck speed.

Never mind my complaints about my personal wasteland. My wasteland is a consequence of my mother's starting far too late and flagrantly ignoring my advice when she was hale and hearty. The result is that I have been forced in to a corner where, in defense of my future and her present, I must sacrifice my present. It is a painful lesson that I wish I could help others avoid. I imagine the catastrophe that awaits those who do nothing at all and though it is none of my business, it terrifies me. I wish I could figure out how to get my insurance agent (with his unsuccessful attempt to increase sales of Long Term Care products) or my credit unions (local and foreign) to understand what an enormous opportunity exists here. As usual though, whereas others see a threat (or nothing at all), I see an opportunity. Unfortunately, I seem to be alone in holding that view. That is nothing new.

This is not a kind of expertise I have sought. It has sought me. Or perhaps, I was educated for such a time as this. It never fails to intrigue me that of all the graduate degrees I could have pursued, I chose an MBA: so that I could step in as family CFO and turn chaos into something else.

I'm not one to run up and down the streets selling my wares but this here expertise is worth sharing. Now, if I could just get ONE person to listen. Never mind that this caregiver has been laid low, the patient's affairs are in excellent order. In fact, chugging along at this pace, she could really start living it up in another year. Maybe given her condition that's not likely, but she will be able, with continued careful spending, to completely cover the costs of her care with pennies left over for a few nice-to-haves. And this, for the first time in her life.

So here goes:"Fruits! Vegetables! Retirement planning anyone?" Let's see if that works. I want to be an evangelist for retirement planning. Surely, in a society that claims to revere its seniors but is constantly talking about doing away with Social Security or changing it radically, such evangelism should be able to find some traction? Surely in a society like Trinidad where we have the tiniest, skimpiest social safety net possible, such an idea should find some traction? Do I need to get up on the roof (unclothed?), shouting and waving my arms? What is it that I'm not doing to advance this 'cause', because for me, this is a cause.

You don't want to be where I am. I promise you that. Heck, I don't want you to be where I am even if the company would be nice.

Vesuvius

The temptation to blow like Vesuvius is strong but given that I know it won't help anything, I have to write out my anger instead. And even that I must do judiciously.

So as usual, I approached the day as any warrior would: armed for the battles ahead. Perhaps rather than say "armed" I should simply say "ready" but as usual, I started the day as a warrior (ready to prevail in any and all circumstances) and ended it as a survivor (just grateful to get out of the battle alive if not unscathed).

The nature of my circumstances is that there will always be (once we step outside the house) a need for me to explain why I need to do things the way I do. Yesterday was no different, though I had really hoped it would be. First mistake.

We had eye appointments yesterday. Note that I said "we". My second mistake was thinking that I could possibly get care for myself without paying a high price. Ha!

The eye clinic we use is one Mummy has been using for the entire decade that she's been here. It's also a place where I have asked them on a multiplicity of occasions to write on her chart that she has AD. Of course, they no longer use 'charts' per se, so I really have no idea how that kind of information is communicated among doctors. In my attempt to minimize the challenges, I asked for two consecutive appointments (don't worry, I said "back to back"). I got two contemporaneous appointments. Yes, well, what can I say? So first they call me and what does one do when one has to keep an eye on one's charge? One brings one's charge in to the appointment naturally. Two minutes into said appointment, though, the charge needs to go to the bathroom. Says the med tech to me, "Can't she just go by herself?". "Uh, no, she can't. She won't get there and then she won't come back." So up I jump to take Barbs to the restroom, saying to the tech, "Well, if I have to lose my place and wait then that's what we'll have to do." I'm tired already and we have barely begun.

Bathroom run completed, we return to the waiting area. The tech has graciously waited for us and we walk back in to the room to resume where we left off. Things are moving along as expected only they want to add dilation of my pupils (a time-consuming and annoying process) to my appointment since I haven't been seen in more than 6 months. That will probably add another hour to the time we'll be there. Lovely. So much for being out of the city before darkness falls. The tech pops those nasty bright yellow drops into my eyes and we return to the waiting room to wait for the pupils to do their thing. Then they call Mummy's name. Now I have to switch roles from patient to patient advocate.

In spite of my requests that doctors be advised that the patient has AD, the doctors still insist on asking Mummy what drops she's taking. PEOPLE! Some days she doesn't know the names of her damn children you think she's going to know the names of the freaking eye drops? For the love of Mike! More than the annoyance of running from one appointment to another; more than the exhaustion of switching from one role to another; more than the having to think six steps ahead just because we're going out (have you packed a snack, do you have some water, do you have money for lunch if you're going to be out too long, what about taxi fare to get back to the house if you can't wait for a ride home and on, and on), it is the annoyance that bubbles up when I have to intercede when Mummy is unable to respond to basic questions about her care that upsets me most. Does it occur to these doctors-in-training that it might actually do something negative to the patient's psyche to find that they don't have the answers to basic questions about their care? My mother may have Alzheimer's Disease, but she is still a person with feelings. Even feelings of inadequacy. All too often, those are the only feelings she has.

Needless to say, while I'm in there with Barbara, they call my name again. And so, straddling the fence between advocate and patient, I must now step out of the consulting room to explain to the doctor that I'm not available (to be a patient) because my mother is being seen and she cannot answer questions for herself (she needs an advocate), nor indeed, can she be relied on to remember if changes are made to her treatment. I return to the room and Barbara's appointment proceeds. Once finished, the doctor heads off to find the attending on duty to explain the case and have the follow up instructions approved. That takes a good 15 minutes during which time, you guessed it, I'm called again. Once more I step out to explain that I'm not available because blah, blah, blah. This time Barbara steps out of the room and I have to send her back to the consultation room. I guess it was all starting to look a little crazy because the front desk attendant stepped in to offer to keep an eye on Mummy so that I could return to my role as patient.

By the time all was said and done, it was just after 5 pm. We had been there since 1:40 pm (having started preparing for this visit at 9:00am with a one hour workout - I definitely needed it!) and I was exhausted. Then of course, I get home only to find that given that it's the maid's decade off, someone (moi) needed to produce dinner. There weren't enough leftovers to serve four and Mary Jackass here had no energy to prepare something new, so dinner was a serious case of "whatever's in there that's edible"......which reminds me that I have some chicken in the fridge awaiting my ministrations.  I mussbe kill priest, as we say in Trinidad, because this pressure is not letting up.


There probably isn't anything that would have made yesterday any easier, except perhaps hiring a caregiver for the day to take Mummy  to her appointment. That would have freed me to simply be a patient. Maybe next time I'll try that.

One of these days, Vesuvius is gonna blow. You have been warned. You should probably stand back.

Oh and that's just ONE of the things that happened yesterday.



Copyright © December 2011 L.S. Semper