Monday, December 19, 2011

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

Saturday, December 17, 2011

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.

Friday, December 16, 2011

My Road Less Traveled

a road less travelled by Pictures, Images and PhotosThere 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'.

Wednesday, December 14, 2011

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.

Tuesday, December 13, 2011


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

Monday, November 28, 2011

Love: a hot wave of something that must come out

In my last post, I talked about how I was, for the first time, having to deal with feelings of despair caused by my personal and professional losses. The professional loss  was occasioned by losing a terrific job on account of the crise financial consequent upon unpaid care-giving; the impending personal loss was of my beloved friend who was working her way across the chilly Jordan.

My friend has completed her work and the despair has lifted but grief has taken its place. I'm inclined to think that's an improvement. At the same time, I'm now asking myself whether I'm truly grieving for this woman who loved me and respected me in ways I had not felt from my own mother, or if it is that I'm grieving what my mother perhaps should have been but was unable to be? Truthfully, I have no idea.

On reflection, I realize that my friend seemed, towards the end, more like a mother to me than my own is. She is one of the first people outside my family that I've ever told "I love you", since those words aren't much bandied about in my culture. Even in the absence of the words though, it is still possible to obviously demonstrate love. I can clearly remember my grandmother doing things that let me know how deeply she loved and cherished me as both granddaughter and friend, but I have few such recollections of my mother.

My mother was ever the pragmatic parent, very much about the 'business' of child-rearing but not so much about the softer side of that work. Unfortunately, within the daily grind that is raising healthy children, there was little room for giving the emotional sustenance her children also needed. Perhaps this is why parents should tell their children that they love them, because there's so much pragmatic parenting going on, that love might get lost in the shuffle? Perhaps it was that my mother had challenges of her own that she never quite overcame and that made her very careful with her emotions........even with her own children. I find no fault here. We are all broken, or at least cracked, in some way. This was hers.

I remember once watching an episode of Oprah in which Maya Angelou talked about how she would look at her son Bailey when he came in to the room: with love and amazement. If you've been a parent - real or pretend - you know the look and you know the emotion that precedes the look. It's a hot wave of something that has to come out. My mother, who was watching the episode with me, said aloud that she would deliberately prevent herself from looking at her children in that way when they came into her presence. EH? Who does that? Who can?? I didn't understand it much then, and I understand it less now that I've felt the feeling. Now that I feel that way about my niece, and felt that way about my late friend, I cannot begin to fathom how one prevents oneself from letting those feelings show.

As I look at myself honestly, I know that I didn't show my late friend all the love I felt for her. Yes, we took her to brunch for her 70th birthday. There was no big fuss or anything, we just went directly after church but we never said, "We're doing this because we love you". It was just us offering what we had: ourselves, our time, to someone we cared deeply about. We also took her for brunch the following Mother's Day, again, because it seemed the right thing to do. Neither my sister nor I ever told her that we loved her until the day we saw her in hospital 6 weeks before she died. I called her once on the phone after that and left a message that said simply, "I love you. That's all. That's all I called to say", and three weeks ago, I called her and asked if we could come and share a worship experience with her at home because I knew she would like it and I knew we, who were losing her, would need it. These were my ways of saying "I love you".

As I lose my mother and find myself, I am realizing that there is much to be found, much to be understood, evaluated, and adjusted if a healthier and happier tomorrow is to result. I have to learn to speak the words of love and then demonstrate that love in ways I know are meaningful to others.

I have work to do. These losses (the actual and the one in process) have helped me to see what that work is and light the way to, hopefully, getting it done.

Copyright © December 2011 L.S. Semper 

Wednesday, November 9, 2011


I'm coming to terms with my life.This is not easy, nor am I much liking what I'm seeing but it's happening all the same.

So this weekend, I was offered a job. A good one. One that paid well and was work from home even. So there would be neither commuting expenses nor costs of care. Problem? (Can you  hear that there's a problem coming?) Well, the problem is that on account of all these months without work (on account of having to do this other thing that I've been doing), I can't pass a security/credit check. I have no shame in admitting this. If you've been reading this blog you know that the cost of care will either wipe you out financially or it'll wipe you out financially. Those are pretty much the only choices - well it could also wipe you out emotionally but we're trying really hard to avoid that. So I've been wiped out financially and now I find that as a consequence of that, it looks like I may also be wiped out professionally. Well what a hot firetrucking mess this has become.

I'm not entirely sure why I'm surprised. Somewhere in my psyche I knew that this was a possibility but still, the reality is a little (or a lot) shocking. The question I now ask myself is, "Well, now what?" I'm pretty sure there's some conservative thinker out there ready with a, "Well if you would try harder" response, but friends, Romans, countrymen, I'm not entirely sure what else there is to be tried. On more than one occasion folk have told me I'm funny, I should do stand up. Hell, at this point, I'd do strip tease, pole dancing or strike a pose on a street corner (OK that really is a joke) but after that I'm pretty much out of ideas. I'm currently looking for a night job (a legal one!! :-)) perhaps doing data entry, but I'm not sure how that will work. But it would at least be a j-o-b. Any port in a storm right?

My sh*t is all over the place, and yet, I work very hard to ensure that my mother's affairs remain in good order. Health insurance? She's got. Me, not so much. Life insurance? She's got. Me, not so much (my insurance is hanging by a thread really). Doctor's appointments? Yes for her, no for me. Dentist? Yes for her, no for me. And on, and on, and on it goes. And in the middle of all this a dear beloved friend is gravely ill and I can only weep.

If there's a message, a learning in here, someone needs to offer it up to me because today, this day, this hour, I'm not seeing it.

In the four years since Mummy's diagnosis, I have never felt despair. Until today. Maybe tomorrow will be better. I'm looking forward to sunrise.

Copyright © November 2011 L.S. Semper


It may be slow, it may be imperceptible, but growth happens.

Yesterday evening, I was in the kitchen humming an old Mendelssohn song "I Waited for the Lord". Mummy was nearby. This song is one my grandmother - of whom I've written a time or two - was very fond. It was one she always wanted to hear my sister and I sing together. Well anyway, there I was, humming this song and my mother started to sing along.

Here's what happened next.
She says to me, "Where did you go to school?"
I reply, "St. Gabriel's Private School and Bishop Anstey High School, but this is a song my grandmother was fond of."
She replies, "Mine too. My mother I mean."

For once, I didn't try to tell her who I was. For once, my reflexes didn't kick in. For once. Growth comes. It may be slow, it may be imperceptible but growth happens. Though reality is unchanged, my response to it is. Hallelujah.

Copyright © November 2011 L.S. Semper

Friday, November 4, 2011

Right Hook

My mother lives with strangers. They (we) may know her name and they (we) may call her Mummy, but we are strangers.

Today, when she stumbled across a French workbook that I'd left on the dining table hoping to have her work some exercises, she wondered aloud whose it might be. Stumbling (as usual) into the trap, I offered that it was hers. The look on her face is hard to describe. Let's just say she was stunned that anyone here would know her well enough to buy such a thing for her. "Mummy," I said, "I am your child. You gave birth to me 46 years ago." "Excuse me?" she replied, with that you-have-to-be-joking look on her face. Ah yes. There it is. Right hook. Great contact. She's down for the count.....................

If I had tears, I would shed them. There will come a time when this is beyond me. I see that clearly. There are only so many punches to the face one can take without losing some teeth or getting a concussion or something. I'm just sayin'. 

Saturday, October 29, 2011

What judgement weighs

It's probably very easy, if you're not walking in my shoes, to judge the choices I (and others like me) make. I know that in the past, I've wondered about - and judged? - families that chose to put their seniors into care facilities. Let me say now, I wonder no longer. I get it. Completely. Let me say also that any judgement of my choices does not add to the weight I'm currently carrying. I'm already at maximum capacity you see, couldn't carry anymore even if I wanted to, so judgement weighs nothing.

Someone I know is in the unenviable position of having to seriously consider finding an appropriate institution for her aging parent. Of course, she's going through the process as slowly as she possibly can likely because she knows she can only hold out so much longer. It must be a wrenching decision to have to make. From what I can see, she should already be at breaking point and yet she trudges on. She's better than me. I already know the time will come, and have some sense of what signs I'll get from my body and my psyche that it's time to call it a day. The trouble, if you want to call it 'trouble' is that there is always a risk that someone who is not on the inside of the journey with you is going to judge you. My take: judge away. I truly could not care less. I don't have the energy to care.

Anyone who has not cleaned stained bed linen; hunted for an eye patch that was hidden in a shoe; argued/negotiated/wheedled over breakfast, lunch and/or dinner; contemplated and then finally bought an adult bib; had to stop a parent from consuming a teabag; had to force open barricaded doors; or had to deal with that wild-eyed 'I-don't-know-who-you-are' look a time or two, anyone who hasn't dealt with any of these and more, well you're free to judge but really on what authority and basis would you be doing so?

As for us, the caregivers, we have to make choices based on the circumstances in front of us and what's going on in our guts and homes. Our choices are based on hard reality not some romanticized notion of how we should care for our elders. There's a lot to be juggled and kept in balance if we're all to make it to the finish line, wherever that might be.

In my case, I will be asking myself whether I am at my limit. I will be asking myself whether I feel I can do just a little bit more, for just a little while longer. I'm guessing that if I have the energy to ask the question, I'll know I can go on. I'm pretty sure that when I'm tapped out, I won't even need to ask the questions. No one can know the answers to these questions but those of us on the front lines. I appreciate that as an onlooker one might have an opinion, but as an onlooker and not an in-dweller, that's all it is and it doesn't (respectfully) carry a whole lot of weight. This is truly one of those situations where you really can only know if you've walked a mile or two in the moccasins.

No, we're not there yet but the discussion has come up. When this gets to be too much, when it gets to be too hard watching Mummy wander into the kitchen with that purposeless purposefulness, when that starts to grind us down, we'll figure something else out. Until then, we'll plod on. When we do get to that point though, don't waste any energy judging us. We will probably have judged ourselves already.

Copyright © November 2011 L.S. Semper

Tuesday, October 11, 2011

Pudding face

The proof of the pudding is in the taste or perhaps in the pudding face. Well, I've got pudding face and I'm happy to say so.

I wish I could write freely about what I've managed to achieve in the management of the fiscal crisis that long term care precipitates but you know the internet. It really isn't safe to post even your name these days because once you do, someone's knocking your door down trying to steal your identity or worse.

What I can tell you is what I told my own family: don't depend on having money. Today's costs of care cannot be paid for out of today's earnings. They need to be paid for out of savings long held or out of a stream of income earmarked for just that.

Money is very easily outlived (I've done it a time or two already and I'm extremely frugal) but you cannot outlive income. You may perhaps outgrow it, but you won't outlive it. Think about it. Twelve thousand dollars will always be just that: twelve thousand. Over time, with the rising cost of living and the continuing need to eat and go to the doctor and all manner of other thing, that lump sum will dwindle to nothing. The same is true if the starting point is twelve thousand or one hundred and twenty thousand. A one thousand dollar a month income however, will just keep on coming. Like the tide, it keeps flowing. In twelve months, you'll have seen $12,000 but guess what? In month number 13, here it comes again and with it, another opportunity to stay ahead of your financial commitments. As I said, you may outgrow it, it may cease paying all the bills but it won't stop. Your goal therefore should be to figure out how to beef that income up, so that it stays abreast of your financial responsibilities and commitments.

When my mother retired, her mantra was, "I must hold on to my gratuity" and she tried valiantly to do just that. But life throws things at you, and you find yourself dipping in to these precious savings. Before you know it, it's all gone. Even if you do manage to hold on to it, money loses its value. Inflation is not your friend, hyper-inflation even less so, difficult economic times or 'green guava season' as we say in Trinidad, none of these is a friend to the retiree. These things happen and our savings, unless we are multimillionaires, are no match for economic uncertainty + aging's illnesses. The only thing that works to keep the wolf from the door is income. [Playing the lottery is a fun Plan B, but for obvious reasons cannot be counted on to bear fruit. And for my older friends for whom hoping they don't get sick is the Plan B, all I can say is that 'hope' is not a plan.]

So I'll just say this (again): have that Talk with your parents or your children and come up with a plan to earn and save the funds required for care, then work the plan. Don't expect easy. Don't think there won't be many, many hiccups but trust and believe that with time and a bit of luck, your plan will bear fruit.

Personally, I recommend some low stress business venture that creates a small (but hopefully growing) stream of income. Only you can know what will work for your family. I'm a big believer in leaning in to your gifts, using whatever talents you have, to create something that works. Like making bread? See what you can do. Make homemade breads for your neighbors, once a week, once a month. Whatever works for you. Like making chocolates? Try your hand at that. Love writing? Well, see if there's a low stress way to use that gift to generate a dollar.....and when you find out how, send me a note! I'm just saying, lean in to whatever gift or passion you have and see where it might lead. If you're not sure whether your idea is a good one, bounce it off a couple of people you trust (can't stress that enough!) and then move forward gingerly. Heck if you can't find anyone to talk to, talk to me. I'd love to help. I'd be thrilled to see others leave the land of 'let's pretend it'll be OK'. I've told you how that turned out for us.

Nothing comes without a lot of effort and some pain, but in the end it will have been worth it.

The proof of the pudding they say, is in the taste and mine tastes pretty good. Hallelujah! There are many bumps in the road ahead, but at least I can see more clearly now.

Copyright © October 2011 L.S. Semper 

Wednesday, October 5, 2011

Reality check, deuxième fois

Typically, in the aftermath of a great event, there's a debriefing. In the debrief, from what I've gathered from my reading of various thrillers, parties to the event talk about what went on, how it went and perhaps if it's a learning organization, there is also some talk about how things could have been handled differently or better. In the parallel universe that is Alzheimer's care, you can dispense with the debriefing. It serves no useful purpose.

Case Study
This morning, mother and I went out to one of her doctor's appointments. We were out for several hours. We came home and I immediately served lunch. I try to limit the number of hours without food or water, because we have found that good alimentation and hydration help to keep the mind clear. Yeah, well.

At approximately five p.m., mother came down the stairs in her outside shoes (usually she's in bedroom slippers) and said to me, "I'm going out". Now, I thought she meant that she was going to take a walk alone. This would have been a problem since she tends to go too far and not remember which house she lives in, but this time, she had far more on her mind. It turned out that what she meant was that she was going to walk to her sister's house. Unfortunately, her sister does not live on this land mass, so clearly this was not a good idea. I stopped her at the door and advised calmly that we were in the United States of America and that her sister was at home in Trinidad. She chuckled in that, "I don't think so" way that she does. Here's what happened next ...........

"I spent the entire morning with her this morning", she insisted, this in response to my saying that her sister was at home in Trinidad and that we were at home in the US.
"No," I replied. "You spent the morning with me."
She gave me one of her famous, 'don't be ridiculous' looks even as she pulled the front door further open. So there we were getting ready to get in to a tug-o-war over the front door. She was ready to head out to find her sister, and I was busy trying to stop her progress. Frankly I was also a little nervous about the intent in her eyes and voice. She was going. Her mind was made up. I had to figure out how to stop her. For a brief moment there, I was scrambling psychologically and then a flash of genius, "Well, let me just call her for you," I offered. 
"I don't know the number," she said. 
"Well I know it. I can call her." 
"You know it? How you know it?"
"She's my aunt. I know the number."
"She's your aunt? I never knew that."
There's no time for self pity or frustration or anguish here. I don't even know what those things feel like. All I know is that I have to get on with it. Whatever it takes to slow her momentum. I made the call and tersely explained to my aunt that I was calling because Barbara was trying to head out the door to walk to her place. They talked for about 20 minutes. From what I could hear of the call, they seemed to be having a fairly normal conversation. As usual, the question of Mummy going home to resume teaching came up, but my aunt did her best to dissuade her. At the end of the call, Barbara seemed to be better oriented as to place and person but who really knows? Certainly, she was no longer intent on heading out the front door!

After the call I found myself, because Mummy now seemed more Mummy-esque, trying to debrief the event. How stoopid am I? Seriously? In my weak defense I will say that at that point, Barbara really did seem to be more in the present, so I actually thought (did I really think at all?) this was a good idea. But just to prove that reality and orientation as to time, person and place are fleeting what did she say to me? As I recounted the events of the last thirty minutes she laughed and began to explain things away and then, because it seemed relevant I asked, "Do you know who I am? Do you know my name?"
"No" she said, "what is your name?" I told her. And then, the punch-in-the-face line, she said to me, "You are Mary Smith? If you were Mary Smith I would know you and you would know me."

I would know you, you would know me. Reality, expletive deleted, check. Deuxième fois. How many times will reality be checked I wonder?

Copyright © October 2011 L.S. Semper 

Monday, October 3, 2011

Caribbean Legal Torture

Chinese water torture, what is that? I have no idea myself, but this that I am experiencing now, has got to be pretty close. If it's not Chinese water torture, at the very least, it's Caribbean legal torture.This may be directly relevant to my friends in the West Indies, but the underlying issues are universal and a stitch in time saves nine, so goes the old adage.

When death comes, if there is a will please probate it and settle the estate as quickly as possible. If there is no will, apply for Letters of Administration immediately. There is no point to waiting. In fact, there are many dangers if you do, not the least of which is the declining health and mental acuity of the executor/trix or Heaven forbid, his/her death.

In the Caribbean probate is non-transferable, so until the estate is settled and all the bits and pieces of property are duly transferred to their new owners, the executor/trix of an estate needs to remain sound of mind and body. In our case, so many years have elapsed since the probate was granted (twenty-six and counting), that my mother has had time to fall ill. Being no longer of sound mind, the entire process is set back almost to the very beginning. Sigh.Tick tock. Tick tock.

Apart from the challenges with Mummy's role as executrix of a will, Mummy also has a role in her own affairs. Initially, because she didn't travel home very often, a Power of Attorney was needed to ensure that her affairs remained in good order.  That worked for a long while until circumstances required an adjustment to the parties to the POA. At that point, we had to revoke one POA and establish a new one. Then we got the Alzheimer's diagnosis. Because in the Caribbean Powers of Attorney are not durable, an Alzheimer's diagnosis also means that a new legal instrument will eventually be required. Enter the Committee status - our equivalent of legal guardianship.

This latest proceeding has taken me quite some time to complete, though mostly because my timing got me a court date just before the end of the law term and the Embassy here really fell down on the job. I therefore had to wait until the start of the new law term in September before I could have my petition heard and approved. In the meantime, no major business could be transacted. Fortunately, there was nothing urgent going on but what if there were? What then?

Now that that piece is done, I find myself back at the courthouse door waiting for something else. As I said before, I'm back at square almost one with my grandfather's will. Heaven knows how long it will be before I'll be able to settle that estate per his wishes as he wrote them some thirty plus years ago. Tick tick tick. This one has no 'tock', the watch seems to have stuck somewhere. Prayerfully, we'll get it unstuck eventually.

So now you know. Waste no more time. The clock is ticking (and tocking). Do what must be done and do it now. It really only gets very, very knotty and unpleasant the longer you wait and the time lost is just that: lost.

Do as we didn't, not as we did! I don't think I can say this often enough.

The Cost of Care - Part 2: Act Now! (Reprise)

Rough morning. I'm tired and I feel like blaming someone....or maybe I just feel like calling a spade a spade.

It is, sometimes, a terrible thing to be right. It's even worse if you're right but you're waiting for others to either agree with your analysis (and come to the same conclusion) or just take the leap of faith required, and say, "OK, she sounds like she knows what she's talking about. I'll just go along." This, I have learned, is not how the world works. Certainly, it ain't how families work.

Several years ago, I figured out that illness might be a problem down the road for us. My family (not the nuclear one but the extended one) was very close and there was a certain expectation that it would be one for all and all for one. We also tend to be very long lived. My granny lived to 96.75 and my grandfather to 85. Well, with all that in mind, I worked out that a senior generation of four, could not be supported by a junior generation of four. The math simply didn't work.* In one case the aging parent would be supported by two children; in two other cases, there was only one child; in the fourth case, there were no children at all. To me, the forecast looked challenging. Actually, it looked pretty grim. I was right.

I tried unsuccessfully to have The Talk (about aging and planning and needs). I even wrote a business plan for how we could use an old, tired, underutilized property to create a stream of income. Nothing. No bites. Not even a couple of quick nibbles. No interest whatsoever. I'm not sure if the failure was entirely mine - a failure to communicate the urgency of the situation -  or if the failure was theirs  - a failure to believe that I actually had their best interests at heart. More than likely, it was a combination of the two. Whatever it was, we did nothing and a decade went by.

Today, the future I feared is now the present. That old expression: 'that which I most fear has come to pass', is now where we live. The lesson I've learned along the way is that sometimes you have to ignore folk and do what you know needs to be done. I should have gone all Star Trek on them and 'boldly gone where no one had gone before'. The trouble with that is that if you don't have the requisite power in your family to make things happen, you're stuck. Being stuck is fine if your assessment was wrong and your parents have it all figured out financially, or if you don't give a rat's hind parts how your parents live in their retirement years. If, however, you do give a rat's patootie, and you were right..............................

What I hadn't realized might be a consequence of having one's insights roundly and repeatedly ignored was the constant tension, the constant worry, the time and energy diverted from following your own path, which must now be invested in swimming against the current, without drowning. I am so tired. You have no earthly idea. Some days, I'm up and at 'em, no worries. Other days, the thought of what all I'm responsible for is enough to floor me and keep me floored.

I cannot say this often enough: TALK TO YOUR PARENTS. It is never too soon and it is never too late. Even after a diagnosis comes, you can be creative and make things happen but you must have the conversation. Go to the Volunteers of America website. Resources are available and if all else fails, pay a professional to help you. Talk to someone you love TODAY. Nothing is more important. Trust me on this.

Copyright © October 2011 L.S. Semper 

*Simply put, if one person's earnings comfortably support the earner, they necessarily cannot also comfortably support two. Once the needs grow, if the earnings do not grow commensurately, there will be some financial tension and stress.

Saturday, October 1, 2011

Reality Check

For those who do not live with an Alzheimer's patient, denial of reality is not only possible, it's probable. Heck, I live with a patient and I still sometimes fall into the mistaken belief (and act upon that belief) that Mummy gets where I'm going logically or that she knows who I am in some consistent way. Neither is true.

This evening, I listened to my mother converse with her sister. This sibling is not a regular caller so Mummy's state is something of a surprise to her. I have to admit that it was fascinating to hear the conversation. Mummy has great covering skills, so it sounds like she's following you and going where you're going, but only some of that is real. The holes in comprehension and connection with you may or may not eventually become clear. Tonight, the holes only become apparent when Mummy began asking about her 'people'.

My aunt, in her attempt to avoid the word 'deceased' or 'dead' tried with this: "Well, if you are 76 today, Daddy would have been 111 and Mummy, 109." Silence. Editorial comment: Mummy really is beyond the point of inferring anything. If you want her to know something, you pretty much have to lay it out there. Of course, my aunt, not being in regular touch and being separated by much physical distance, didn't know this going in to the conversation. When it became clear from the tone of the silence that Mummy hadn't understood, she simply had to lay it out there: "They are no longer with us." My aunt is a mistress of delicate statements and euphemism, so in that moment, she was forced to confront a new reality. She knew she would have to say the words. So in that moment, Mummy learned (once again) that her parents were gone and my aunt learned that her sister might be too.

Reality check. Reality? Check.

Another check: she is conversing with someone now and assuring them that her children are not here. Well, I'm on the computer in the next room. Does that count?

Reality check. Reality? Check.

And in today's news............

Mummy is asking about her parents. Her sister, who called to offer birthday greetings, tried to gently explain that if Mummy is 76 today, Daddy would be 111 and Granny would be 109. SILENCE. No comprehension. The words must be said, "They are no longer with us." SILENCE. SADNESS. Less than 5 minutes later, "What about Mummy & Daddy?" Shades of Apple, Table, Penny.

Wednesday, September 28, 2011

The Cost of Care - Part 2: Act Now!

One of the things that I hope this blog does is encourage others to discuss long term care needs with their families. If  you have no parents (because you fell from the top of a baobab tree) then you have nothing to discuss. If you came to this planet the regular way, um, might I suggest a conversation is necessary? And soon? Because without a plan, care can (and often does) cost everything: every penny, every ounce of energy, every everything.

When Martha Stewart and Maria Shriver talked recently about how Alzheimer's Disease could, and well might, wipe families out financially, they weren't lying. And frankly, though it would probably take a small village of Alzheimer's patients to wipe Martha Stewart out financially, the point was well made.

We are fortunate in that even in these frightening circumstances, in the dark recesses of my mind, schemes continue to form. Thank God for B-school! One of those 'schemes', a retirement readiness seminar targeted to pre-retirees, retirees and the children of those, is probably the most viable way forward for me. By tapping in to and marrying what I've learned in the schools of business and caregiving, I might yet prevent another family from dealing with some of what we've dealt with over the last two years. The issues this situation has brought to us are ones I can speak to with rather more authority than I would prefer, but there you have it.

Here's the trouble with that plan though: most people would rather whistle past the cemetery at night, rather than go in and confront that which they fear. In short, folk just don't want to talk about it. And even if there is a relatively easy way of dealing with the frightening truth, people would often prefer to avoid the discussion altogether. Here's my response to that: don't freaking do it! Avoidance is beyond simply irresponsible, it's downright dangerous. As I've had to tell my own family, you're standing in a train station. The fact that there's no train in front of you doesn't mean that there isn't one a-coming. If you foolishly stand in the middle of the tracks, you can trust and believe you will be run over. Trying to scamper out of the way at the last minute? Bad idea. I'm just sayin'.

Case Study: a family I know well, avoided the conversation. This family was fortunate to have a family member who went to business school and had a pretty good head on her shoulders (who am I kidding, you know I'm talking about myself). But there were no words that could be employed to prompt action. Time went by, and nothing was done. Valuable assets lost value, and still nothing was done. At the time the topic was first broached, only one member of the senior generation was ill. Ten years on, two are ill and all are ten years older.

I understand all too well the reluctance to look closely at our finances and our long term care plan, but as one who lives in the land of the plan in action, let me suggest that you sneak a peak. To be here, where I am now, without something in place? Oh, the thought is too horrendous to contemplate.  So while I empathize with your discomfort, I know that having taken a look, I've been able to do something that has kept us well back from the financial precipice that care-giving very quickly drives families to and frequently off.

Creating a plan and executing that plan are  not easy. Hard decisions have to be made. Families may have to get comfortable with ideas never before considered: moving parents in; renting childhood homes to produce a continuing source of income; starting home-based businesses. All of these and more may need to be looked at but I can say with certainty that there are benefits. By making the right moves, hopefully at the right time, you can create a path that leads away from the precipice. Parents may prefer that the status quo remain in place (my mother certainly did), but that status quo will most assuredly steal tomorrow, theirs, yours and your children's. Act now.

Thursday, September 22, 2011

The Cost of Care - Part 1

I love food. In fact, I eat recreationally. The only reason I don't weigh 300 pounds is that I'm a fan of The Biggest Loser workouts. My mother on the other hand, has to be inveigled to eat (she also has to be inveigled to exercise but that's a whole other post). Every meal requires a negotiation. I've taken to not negotiating but rather to saying, "You need to come down for dinner" and then disappearing. It's simply easier. If you linger, you will be forced to negotiate.

What I find fascinating though is that the disease's goal seems to be to starve the patient. Mummy used to feel hunger, but these days it seems as though the whole 'hunger' sensation is a thing of the past. In the not-too-distant past, Mummy would come to the table and as she began to eat she might say, "I should have eaten half an hour ago" or "I didn't realize I was so hungry". These days, she simply eats and extremely slowly. Clearly there is no driving internal force pushing her to consume her meal. Even though I always start after her, I'm serving so that's natural, I will typically finish eating before her. The caregiver's role then, is to stand between the patient and the patient's body's apparent intent to go quietly into the night.

Alzheimer's patients who receive reasonably good care live longer and are not prone to dehydration and malnourishment because someone is taking care of those details. They are healthier not because their bodies are holding up so much better, but rather because someone else is holding them up. This weight-carrying takes a toll though. None of this long life business comes without some price. I now fully understand why it is widely believed that care-giving shortens the caregiver's life by ten years. This makes perfect sense. If I carry you, I can't also carry me. Even if I am able to carry both of us, one of us is going to get short shrift because the resources of time and money are finite. Guess who that's likely to be?

Care-giving, it seems, is a zero sum game. The resources are finite. If I give some to you, there really is that much less for me. Perhaps this is why, in spite of everything on my plate, I still carve out time for a workout. It's one of the most important slices of 'me' time in the day.

Friday, September 16, 2011

A birthday thought......

When I think that on this day thirteen years ago, my grandmother left us to travel on and I look at my mother's situation, I can only wonder what made them so different. What made their lives turn in such completely opposite directions? One begat the other and yet they could almost be from two different universes, so different were their approaches to life.

Granny - Olga Winnifred Comma Maynard - died at ripe old age of 96 (and three-quarters, but who's counting?). She was, until the year of her passing, fully alive. She was bright, interesting and interested in everything around her. For her last big writing project in 1997 (she had many in my lifetime), she was writing an article to the newspaper about all the Y2K fuss. She was passionate about her family and her God; full of life and love; and as enthralled about nature at 96 as she had been at 6, I'm guessing. She was a complete joy and lived in complete joy. Though widowed at 83, she spent the remaining days of her life alone but never lonely. Well it would have been hard to be lonely. How could she be with all the 'heathens' (her loving term for the lot of us), traipsing through her house day and night, and her faithful housekeeper/friend/daughter Irene at her side during the daytime?

Mummy on the other hand, is still very much alive but not nearly as fully alive (and this even before her diagnosis I would venture to say), as Granny was. What is it, I wonder, that makes some of us fully alive and others not even nearly so?

Mummy used to say that single parenthood dragged one down. I'm not one to say, having as I do, no chick, nor child, nor parrot on a stick, but certainly my mother never lived the way my Granny did. I often wonder if Mummy's lack of passion for anything other than her profession was part of the path that led us to where we are today? But who can know these things?

So today, on Granny's day and on the eve of my own birthday, I must recommit myself to full life. This is not so easy for any of us to do, but do it I must. In addition to whatever caregiving responsibilities I may have, I must also ensure that my days contain sufficient 'life of the mind' activities. This 'life of the mind' stuff I learned from watching Granny. She practiced this behavior every day and it was a practice which allowed her to be (and feel) productive well into her nineties. Perhaps, these are the things that will keep me fully alive until I, like Granny, travel on. I can only hope and pray.

Thursday, September 15, 2011

Lies and the lying liars who tell them

It has become necessary to lie. It took me some time to get used to the notion as I don't lie typically. The sin of hyperbole I will commit in the best interests of telling a good story, but outright lies I avoid. They simply make me uncomfortable. These days however, the lies are falling fast and thick from my lips. It just makes sense.

The reality of Alzheimer's Disease is that rationality slips away, so trying to be rational is often an exercise in futility. I've spent a goodly amount of time trying to explain things that may only barely make sense to Mummy. Even if the words do make sense, she cannot hold the details, plots and sub-plots that are required to evaluate and assess information. As a result, these days when she asks why something has to be done, I just offer up the first thing that comes to mind. Unfortunately (or fortunately depending on your perspective), that is no longer automatically the truth. Why bother?

Today, the question was "What time is the appointment?" My answer, "Now". Truth be told, the appointment was three hours away but Mummy can no longer dress quickly. She simply has no sense of the passage of time so the bath can take twenty minutes and the dressing another forty. Right there, we've spent an hour. Then there's alimentation. First we must navigate the waters of, "But didn't I have breakfast/lunch/dinner already?" Then there's the inevitable ten minutes after the meal brushing the teeth yet again (second, third or fourth time for the day). When you roll all that together you see that (i) we must start dressing three hours before the appointment and (ii) I gotta lie else she'll want to start dressing an hour before the appointment and we'll be late for everything....not that even with the long lead times we aren't often late but that's another story I suppose.

So there it is. I am now a liar. I have to be.

**the soundtrack of my lies. This is an old Trinidad calypso by the Lord Nelson about, appropriately, a lying competition.

Monday, September 12, 2011

Some comfortable shoes

No one's asked me, and I'm hardly an expert but here's a quick list of the things we've done that have kept our mother functioning at a relatively normal level. While Mummy cannot select her own clothing, she still is able to manage her personal hygiene routine. As Alzheimer's Disease progresses, the simple act of brushing one's own teeth becomes a challenge but we have found a few aids that have helped keep Barbs Barbs for a while longer. By all reports from her physician, her progression is fairly slow and we are very thankful for that.

If you know someone with Alzheimer's Disease, or are a caregiver yourself, you may want to try one or two of these.
  1. Physical exercise. Mummy hates it and avoids the exercise bicycle like it's a communicable disease BUT once she cycles, the blood flow to the brain (I think) yields short term gains in her functioning;
  2. Brain exercises: puzzles. Again, Barbs doesn't much like these but we firmly believe that the brain is a muscle and needs to be worked. We use children's puzzles with 24 pieces. These are doable and yet require the thinking skill (does this match with that) that pushes the brain to work a little harder;
  3. Games: We just discovered an outdoor game called Corn Hole that is both physical activity and brain activity. The goal of the game is to toss a bag (filled with corn) into a hole. The challenge is that you have to figure out how to toss the bag to get it all the way to the opposite side of the field of play. When Mummy tried the game last weekend, we found her engaged and focused, in a way that she isn't much of the time;
  4. Music: We come from a singing and piano playing family. My grandmother was a lover of hymns and so Mummy knows many, many hymns and her experience of music goes back to the womb practically. When she is obviously discombobulated, we turn on the hymn CDs. We've also found that any of the music she loved works just as well. So, we've used Nina Simone, Edith Piaf, Marian Anderson, collections of Negro Spirituals and the music from our old choir. It seems that music memory is slower to fade. Our response to music is visceral so even if the patient has forgotten the words (which Mummy hasn't yet), the melodies and how they make her feel remains. 
  5. Conversation: A caregiver who is good at keeping the patient engaged and talking about their life is a real boon. This may be easier with a stranger than a family member. Conversations with family tend to draw on shared experiences whereas conversations with a caregiver (by definition a stranger) have no such basis. It's just sharing of information. It requires the patient to draw from their experiences but misremembering details doesn't break communications down as it might with a family member;
  6. Laughter: Someone who can get the patient laughing and focused on nonsense rather than on the chaos inside his/her head is a real help as well. Sometimes, just keeping things light really helps to relieve the pressure for the patient.
Some of these things may have little long term effect but laughter and conversation for example ease the way on a daily basis and make life a little more tolerable for all concerned.

None of this is easy and much of this isn't exactly fun, but all that aside, if this is your life...........Well, let's say this, if this is the road you have to walk, best to walk it in comfortable shoes.


The business of orientation

A couple of days ago, we went out to do some errands. Obviously, the first step in any outing is getting dressed. While this isn't as slow as it could be given Mummy's illness, it certainly ain't as fast as it used to be.

Earlier in the day, my sister had awakened Mummy and proceeded (without giving Mummy the benefit of the usual 30 - 40 minutes to orient herself) to ask her to get dressed so that we could go out to do the errands. Well that didn't go so well. What I've discovered is that Mummy's coping/covering/rationalizing mechanisms are hard at work all the time. I've also realized that the business of orientation, of being aware of place and time, is work for an Alzheimer's patient. Getting the brain going after a nap, or first thing in the morning, requires a little time and effort. I now realize that when she is awakened, Mummy spends the next few minutes (hours?) trying to figure out where the heck she is and who the hell we are. She never says anything, but when she does you realize the depths of the confusion. Is it any wonder she sleeps with the rocking chair against the door? But I digress...................

On Saturday, by the time I went up to her room to get her moving on the dressing, she was more in gear, but still not all the way here. We spent a good ten minutes going over who lived in the house, whether she lived here and discussing why she couldn't stay home alone.

Much about this situation is manageable. So far. What is harder to bear is when she says things like, "Well I don't know anything about that" and "That's very strange to me" in response to my repeated assurances that she does in fact live here. For some reason, that freaks me out more than her not knowing who I am. Hey, there are days when I'm not sure who the heck I am anymore so I'm not about to take exception to her not knowing me.

The reality is that this is a brave new world and it is one that evolves and changes on a regular basis. I have no earthly idea where my mother is on any given day. I have no way of knowing if she knows me or not. I no longer trouble to find out. In frustration sometimes, I check on where she is (where are your parents, what country is this, whose house is this) but shortly thereafter I realize that it is an unhelpful exercise, both in the short term and in the long. As long as she's not walking away, trying to wend her way to Port of Spain Trinidad via I-95, I'm cool.

Maybe this question of "orientation" is a moot anyway. Where are you? "Here". Who am I? "You're you". Let's just leave it at that. More than that is too much information anyway.

Friday, July 29, 2011

Losing Mummy, Finding Me

I had a terrific conversation the other day, with a woman in a similar position to mine. Her parent's illness is different from my mother's, but the end result is pretty much the same: the long goodbye.

The thing I took away from that conversation though was this: in the course of this illness, I will lose Barbara (my mother) certainly, but it is actually I who will be found at the end. This is not an outcome I had anticipated or even considered.

My friend said to me basically that the pain we feel in this process is that of ego burn.  I'm not sure that I'll do justice to the incredibly intelligent understanding she has of this process, but I'll try. Her contention was that first, we need to recognise that the process isn't not about the well, but about the ill. Obvious, yes, but not nearly as easy to grasp emotionally as perhaps we might hope.

Second, she suggested that the long goodbye is actually a journey to the center of self. If we choose, and it is indeed a choice to take the journey, we will find that the person we are at the end is very different from (and perhaps an improvement over) the person who started the journey. The pain, the whining, the wailing, the resistance, she suggested to me, were all in response to the burning off of the ego. If I understood her correctly, her take was that the ego, which wants all things bright and beautiful, pretty and flowery, resists its destruction. But ego is a stumbling block on the journey to self. Ego interferes with the process and must therefore be burnt away. Hm.

In light of that, I've changed the name of the blog to Losing Mummy, Finding Me because that may more accurately reflect where this is all heading.

Wednesday, July 13, 2011


And in today's developments in Alzheimer-land, "What is your name?" asks mother. I respond, "Mary Smith". "Smith? That is my name," she responds. "Yes," I say, " I am your daughter." Her response was a facial expression that said, "I have no idea what you're talking about."
Today, I blame the heat, dehydration, changing weather. I'll blame anything but the disease.
This has happened before, of course, but this is the first time episodes have occurred so close together. Tears are available but cannot be allowed to fall freely. Not time for tears. Yet.

Friday, July 8, 2011

Knowing.....or not

This morning, my mother didn't know who Mary (my sister, and no, that's not her name) was. Granted, Mary wasn't in the room when I was talking about her, but typically, when a parent hears their child's name, they know of whom you speak.....except if a parent has Alzheimer's Disease. I assumed, correctly as it turned out, that if she didn't know Mary, she probably didn't know me either. That was a 9:00 am. It's now 4:45 pm and Mummy's asking me where Mary is. This is how we roll. Well, it's how AD rolls.

The only way to survive this disease, I have decided is to figure out which response is required in any given circumstance: wing it or weep. I tend to *wing it* a lot. By this I mean I work hard at not responding to what's in front of me. I'm using smile; go for the cheap laugh or ignore as my coping mechanism. On a day like today, when Barbs clearly doesn't know me, my thought process is basically, "What's the point of getting overwrought about it? Either it will pass or it won't. Just keep on moving."  Don't get me wrong. It's not like this has been an easy skill to acquire, but I've had three plus years. I'm getting there........slowly. So today, I simply ignored it and kept on moving.

I don't know that anyone can warn you about the emotional impact of care giving. Even if they could, there can be no real preparation. Care givers simply have to learn as they go. What I've learned is that I'm not in control of the situation, all I control is my responses, so I have to manage those. I do not always succeed but the trying keeps me young I guess.

Whether we are known or not is a pretty small thing in the grand scheme of things. I don't know what the average life span of an AD patient is, but I do know that the average life span in my family is about 90 years. Given that reality, I just have to hunker down and make the next 15 years of my mother's life the best I can manage. For that to happen, I have to choose either wing it or weep.

I'm taking the wings. Flap, flap.

Tuesday, June 7, 2011

Grateful trumps whiny

Some days we really just want to whine that life ain't fair and all that crap but listen, it really could be much worse. If you're still here you have a fighting chance at making something happen. I know a few folk who are not in the same happy position.

My mother has Alzheimer's disease. On the flip side of that, she's 75 years old and in great physical shape. OK so she doesn't have much muscle tone, but then she ain't competing in Ms. World or anything so it's kinda ok that she doesn't. What she doesn't have is a memory. She just can't remember stuff. Sometimes she doesn't know us, but we know her and surely that's enough? In all other respects, she's the model of good health. She takes no medication for high blood pressure, COPD, diabetes or anything else. She's in great health. That's enough.

This disease is a beast. Once again this week, Mummy was weeping over the loss of her parents.....some 26 and 13.5 years ago....because it was news to her. On the flip side of that, Mummy is alive and well (even if Granny and Daddy are not) and that is enough.

When it comes to whining, I guess I've got things I could whine about but in the grand scheme, I am blessed and highly favored. We all are. I just read the blog of a high school contemporary, a woman about 5 years younger than I, who has a debilitating ailment. I'm pretty sure there are times when she whines but in the main, she seems to take the lumps in her porridge and move on.

Maybe this is why we blog? As we write, we have to acknowledge that we are, in whatsoever estate we find ourselves, very lucky to be on this side of the chilly Jordan. Even if where we are is cold, lonely and downright scary, we're still in the land of the living and we still have a chance to make something good happen for ourselves or for someone else. That's something to shout about. Whining is for babies what with their limited emotional repertoire. Whining, bawling, screaming well, that's all they've got. I'd like to think adults know more and are able to do more.

So I recommend we all try to stay grateful, even when challenged, because grateful trumps whiny every time. I'm going to give it a real try myself.

Sunday, May 8, 2011

One oh one ninety-nine

A major aspect of caregiving is the financial impact it has.I recently heard Maria Shriver (a woman who probably doesn't need to worry much about how she'll pay for care) say that the long term care requirements for the dementias, and other ailments I would add, will lead many families to financial ruin. This family, even with its PhD and its MBA graduates, would have to concur. We would both have to have scaled some pretty significant professional heights for this not to hurt at all. We're not there yet unfortunately.

Today's story.......
Today, I went to the pharmacy to pick up a drug. This drug, an eyedrop, I bought only a week ago for Mummy. Her prescription, filled using her health insurance, was quite reasonable. Well, let me be completely honest, we could have bought the brand name drug with insurance, for $73.00 (yikes!) or the generic for $5.00 Guess which one I took?

This week, I filled my prescription for the same drug. We share many genes, mother and I, including the gene for this particular eye condition. I, however, have no insurance. It was one of the early casualties of the costs of her care. So I filled the prescription, without insurance. Wanna guess the price? You got it. One-oh-one ninety-nine. Should have saved my "Yikes!" for today. I should have bought the cheaper version...oh yeah. I DID! The brand name drug would have run me an additional $67.00. Yeah well that wasn't any kind of option. And so it goes. 

Where's the prep course for this? It's not just the logistics of getting the patient around and managing daily activities that's hard, it's the daily grind of managing the person's financial affairs and ensuring that whatever funds they have don't run out before the end of the race that gets no attention. It's the figuring out how to meet their needs and yours at the same time, on the one pool of funds that is stress inducing. That's the stuff for which no advance notice is given and no preparatory course is offered. It's about having the conversation with oneself, as the pre-retiree or one's parents, as pre-retirees to ensure that everyone is on the same page. It's about making a plan. It's about retiring READY. It can be done. I spend many hours playing catch up now, but we are catching up because I've got a plan.

After three years of hands on management of Mummy's affairs, and seven before that talking about just this set of circumstances to my family (to no avail, I might add), I am an expert. I really should teach a class.

Actually, I really will teach a class. Soon. Really soon. You should come.

Friday, April 8, 2011

Apple, table, penny

Apple, table, penny .

These three words factor in to every appointment with the neurologist. Apple. Table. Penny. Can you remember them? He starts his assessment giving Mummy the same three words every single time. Apple. Table. Penny. From one appointment to the next the words don't change, but the degree of success she has retaining them certainly does.

Yesterday I told Mummy that she had surgery the day before (6 April 2011) no fewer than 20 times. That story line was the day's 'apple, table, penny' exercise. Sometimes, I had to share that information more than once in the span of 5 minutes. Apple. Table. Penny. Over and over and over again. Apple. Table. Penny. And yet, every time she heard the 'news', it was just that, new. "So where was I?" Apple. Table. Penny. Me: "Well, either you were right there, or you sent the eyeball and you stayed at home. (smile)". Her: hearty laughter. Apple. Table. Penny. Apple. Table. Penny.

At dinner time she was confused by the eye patch. "What is all this?" Apple. Table. Penny. "You had eye surgery yesterday so that's there to protect the eye." Her, "Surgery? That is very odd. Where was I?"

Apple. Table. Penny. Apple. Table. Penny. Pray that you can remember those three simple words. Apple. Table. Penny.


Thursday, April 7, 2011

Love bears all things

If anyone ever tells you that anaesthestic is a good idea for a dementia patient do not believe it, even for a moment. I don't think anyone will, but in case they do, think carefully before agreeing to its use.

Mummy had surgery yesterday and while this is typically an awake procedure, her memory challenges make it impossible for her to remain still. She forgets where she is and why, and starts moving around. As you would imagine, this is not a good thing when someone's got a scalpel in your eye. Anyway, end result she had to be sedated.

Before the procedure, she was 'clear'. She seemed to know where she was and why but once the procedure was done, she was all aflutter, confused and incapable of holding an idea in her head for anything longer than a few moments.

I've got to wonder whether the reality is that this is where she is typically but in the absence of the anaesthetic she can camouflage her infirmity better? Perhaps it is that the anaesthetic is bringing her reality to light. Yesterday, she couldn't hide her confusion (since anaesthesia tends to alter your consciousness, even for the able-minded) and we got to see how little is really being retained in her head. And yet, even as I type and as the drug wears off, she's chatting with the caregiver about Tobago, where she was born. Who understands this disease raise your hand, because I surely don't.

Whatever it is, the lesson I've learned here is that I am capable of repeating the same information as many times as necessary without getting angry. Given where I started when we were first diagnosed, that's a pretty big step. I guess seeing your mother wheeled into surgery, even eye surgery, is enough to make you ready to bear all things...even 1000 repetitions of the same piece of information. The Bible is right, love does bear all things, Alzheimer's Disease included.

Tuesday, March 29, 2011


Because, I spend so much time trying to figure out how to stay ahead of the tsunami wave of costs that Alzheimer’s Disease brings, I don’t have time to worry about my mother’s condition or is it that I use that focus to avoid focusing on her not knowing who we are or where she is?

I’m proud of what I’ve been able to do regarding generating some kind of income to help offset the insane costs, but that doesn’t really mitigate the damage to us financially nor indeed does it completely allow me to avoid treating with the physical and psychological realities transpiring right in front of me.

We muddle on........

Tuesday, January 4, 2011

New Year, new phase

I was chatting with a friend this morning and in the course of that conversation, we talked about the responsibilities of family.  Basically, he was saying that, in spite of himself, he was being drawn back in to a family business while I was saying that my role in my own family had morphed into one of Chief Financial Officer.  Nobody prepared either of us for the realities that attend being a part of an ailing family.

When my mother was first diagnosed with dementia, my first response was, "OK, what's the treatment protocol? What pill can we give for this?" Of course, there are no pills that cure.  There are pills that stave off, slow down or otherwise deter, but none that cure.  That pissed me off.  I'm still pissed.  Then one day it became clear (when someone threatened to terminate some coverage or other for non-payment), that she wasn't managing her finances particularly well.  So my sister took that over.  She pays all the bills now.  Phase I.

Then later, it became clear that Mummy shouldn't be left alone.  We got to this point well before the doctor did, but that's OK.  She clearly wasn't eating properly.  She never knew if she had eaten, so I started leaving the lunch prepared.  All she had to do was put it in the microwave but I discovered that she was either eating the lunch cold or tossing it into a pan and warming it all together.....salad, rice, beans, meat, one pot. One meal. Mush.  That was when we determined that a companion would be necessary.  Entering Phase II.

In Phase II, we were bringing in the companion 3 days a week.  We thought she might be able to manage a couple of days without support.  I would call from work to remind her to eat but those calls usually ended in argument.  (This is probably when I first learned that Alzheimer's and dementia patients, while they may be losing sentience, are still sentient enough to resent your intrusion into their affairs.  Tough road to walk that.)

Phase III began when the caregiver was coming in 5 days a week.  We could no longer pretend that Mummy was capable of fending for herself during the day.  Moreover, we were worried about two things, opening doors to strangers and the stove.  Anyone who has had a dementia patient in their midst for any length of time knows the dangers of both of these.

Phase IV may have just begun. Mummy is completely incapable of assisting in her own health care. The simple matter of coughing now that she has a cold, isn't happening.  She makes these little delicate throat-clearing noises which are useless in terms of actually clearing her throat.  She now runs the risk of getting bronchitis or pneumonia because she can't manage a cold.  The common cold.

God only knows what might obtain in Phase V.