Monday, December 13, 2010

Where we are

As long as I've been singing, my mother has been listening.  Recently though, I spent some time working out vocally and she came downstairs to find out who it was. Voices are sort of like fingerprints. No two are alike and once you know one, you can recognize it anywhere, well except in these circumstances.  That's where we are.

About a week ago, my mother asked my sister whether she (my sister) lived here.  In the course of the conversation, mummy asked Lauren what her name was.  Lauren responded, "Lauren".  Mummy replied, "One of my children is named Lauren."  That's where we are.

There's a comedian in Trinidad who's got this funny line in a song, "Where here is?" (you'd have to hear the whole joke to get the point, but suffice to say in context it's laughing-and-snorting funny).  Some days with my mother's situation, I really want to ask, "Where here is?" and I don't mean to be funny when I do.

Ella Fitzgerald, one of Mummy's favorite performers
Mummy's still here, or some of her is.  We take what we get.  Today for example, a little Ella Fitzgerald on the CD player and good food (and now my sister is talking about Christmas traditions at home in Trinidad) and things are almost normal.  Not completely, but almost.  I can't complain. She may be lost some of the time, but the rest of the time at least we know "Where here is".  That's going to have to do.

Monday, November 1, 2010

I know what I know

The mind, that delicate and yet hardy instrument, is a wonder to me.  Mummy knows what she knows and she knows it with certainty.  The trouble is, in the fragile place that is her mind, sometimes what she knows really isn't there to be known.

Confused Pictures, Images and Photos
I'm confused. I don't know why. I just am

This morning there were tears for a for my having ''found" something she has long believed lost.  Mummy has been a retiree from the government service for two decades.  She's been an active pensioner all that time, yet for reasons unfathomable, she believes she has NEVER been in receipt of a pension.  Part of that is her own willful ignorance about her finances and part of that is her disease.  I don't know who to be pissed at, the disease or the old Barbara who chose not to ask questions for fear of the answers.

God forgive me my anger but honestly, sometimes all I can think is, "If you had asked the hard questions when you were hail and hearty, you might not have worried yourself into this state", because I am pretty sure that a lot of today's confusion is born of worry about money. 

I suspect that the normal  fear of outliving one's resources must have been greatly exacerbated in the presence of this other, unfounded, fear.  There is nothing to be done about any of it now of course, but I wonder how many other parents might be worrying themselves sick on account of their strong beliefs in assorted fallacies floating around in their heads? 
aniyah Pictures, Images and Photos

So Mummy is weeping today for joy (or is it despair?), for something never lost but now found.  She is so grateful.  For what?  For me finding that which was never lost?  Sigh.

Wednesday, October 27, 2010

Sleeping IS the Enemy

I've complained before (or whined depending on your opinion), about my mother's sleeping.  She sleeps a lot.  A whole lot.  We have hypothesized that the sleeping hampers her mental acuity.  Well today I'm claiming empirical evidence that supports that finding.  Sleep IS the enemy.

Day before yesterday, Mummy went on her usual Monday jaunt.  She and Ms. C went off to the neighborhood Senior Center where they walked and talked and I think there was some presentation or other.  This is something they do on Mondays and while I've always been sure that it's a good thing, I've never before seen the benefits of it so clearly. 

Cressida sleeping... Pictures, Images and Photos
Once she came home, Barbs took a nap.  Yeah, yeah it was two p.m but hey, some habits are tough to break.  Anyhow, she took her nap and then at about five p.m, I woke her for her afternoon yogurt....good bacteria for the intestine and it's a great source of calcium.  Instead of repairing to bed after the snack, she stayed downstairs and watched the news.  Later in the evening, we had dinner together and were actually able to converse.  And when I say 'converse', I mean really talk. 

Fast forward 24 hours.  Tuesday, Mummy had breakfast starting with a little mishap with the cereal.  After breakfast, she did what she usually does - she returned to her bed.  Efforts to encourage her to go down to the basement and get on the exercise bicycle were met with the usual resistance.  She bedded down and slept like someone who had worked an 18 hour day. 

Unfortunately, the effects of all that sleep were almost immediately noticeable.  At lunch, when advised to take her medication (forgotten earlier in the day), she poured water into the egg cup in which the pills were sitting.  Two of the pills melted almost immediately and she had to drink that sludgy water and spoon up the leftover dregs. Sigh.  And this, just as I had been thinking that we would be the first family ever to have a patient cured of Alzheimer's Disease.  Yes, so I'm still in a bit of denial.

Sleep is the enemy and too much sleep is good for absolutely nothing.  When she sleeps too many hours, Mummy awakes with a terribly cloudy brain....the very thing we're struggling mightily to avoid.  The question is: short of going for a walk every day, several times a day, how do I keep her awake?  We've tried puzzles (she doesn't like them), we've tried the exercise bike (she barely manages 30 mintues), I've tried to get her to play the piano (no interest), and reading is a problem because of failing eyesight.  Twleve hours are a lot to fill when you're not terribly interested in anything.

Monday, October 25, 2010


It suddenly occurred to me today that my life might be unattractive to some.

survival of the fitest Pictures, Images and PhotosThink about it. I've got this situation at home with my mother which obviously occupies a great deal of mind space.  While I am not depressed by it, I am informed by it.  I have difficulty just jumping up and running out to have a drink (was never much of a drinker to begin with, so this situation makes me even less so).  So I wonder, to what extent does my life situation make me a less-than-attractive friend?

This is an academic question really, since there isn't anything that I can (or want) to do about my current set of circumstances, but it did suddenly occur to me that my universe probably excludes some people naturally.  I have noticed for example, a lower tolerance for certain things.  People who can find no source of pleasure or happiness in their lives for example, weary me very quickly.  Having not always been a one who looked on the bright side of things, I do try to be patient, but a commitment to unhappiness (and a refusal to get the right kind of help) is just not something I can easily countenance.

My situation may be acting to cull my circle of friends.  If this is the case then so must it be, because in life, as in nature, a culling of the herd is sometimes critical to the survival of the herd.  Moreover, as I've had to say in other fora, if it comes down to choosing between my mother - imperfect though she may be - and some other, we should just call the competition off.  There is no competition.  Barbs wins every time. Hands down.

I guess now I understand why people join support groups.  Me, I have my blog and my sister and niece.  And often, I also have Mummy.

Thursday, October 21, 2010

Where's the Treasure?

In my last post about the Impossible Dream, I talked about how much of who Mummy was/is will remain even after this disease takes its inevitable toll.  Today, I'm floored by yet another discovery of who that person was/is.

We were typically middle class: long on education, short on cash.  We never went without the necessities, but the frivolities were in short supply.  Every now and again, major sacrifices were made to afford us opportunities that would never come again.  For example, we went, my sister and I, to see the Jackson 5 when they came to Trinidad in 1977.  We even got new outfits for the event!  I can't now remember what the tickets might have cost, but whatever it was, it was a good many dollars in those days.

As I manage more and more of Mummy's affairs now though, I see that she made sacrifices that we knew nothing about.  I'm just discovering (as will happen when you have to take over a parent's finances) that she was one of those people who knew a good deal when she saw it and no matter what it took, she took advantage of it.  She has tucked precious things away in places which I have been fortunate to find given that there's no treasure map available.

While I often shake my head and say, "Oh, she didn't have a plan", clearly she had some semblance of one.  Maybe she's not a millionaire, but the little things that she did are and will yield long term benefits which this daughter can only be amazed to see.  There is power in deliberative action, even if the action isn't part of a greater, well-articulated plan.  Mummy wasn't a planner, but in her gut, she understood that she had to DO something no matter how small.
Treasure Chest

As I wander blindly through the financial landscape, I have to ask, do you know what your parents have done or are doing?  At some point in all our lives, the child becomes the parent.  These days it could be simple aging or worse.  I wonder, should you have to assume the helm for your parents, do you know how to ask the questions that must be asked?  Do you even know what questions need to be asked?  In the link provided, Michelle Singletary (a finance writer for the Washington Post) offers some very useful advice.  This is critical stuff.  Don't wait until it's too late to get the help you need from your parents, putting the pieces of their financial life together.  You don't want to be like me, putting it together on the fly and hoping you've got it all, chasing from bank to bank asking if Mrs. X has an account. 

Dread talking with aging parents about their finances? Try these tips to start - The Boston Globe

Please read the article and then take a breath and talk to your Mummy and Daddy.  Please. 

Monday, October 18, 2010

The Impossible Dream

While standing in front of a building in Trinidad a few weeks ago, I noticed that the building on the other side of the street (which houses a 40+ year old credit union) had been renamed. It's now been named for the credit union's first president. He is now an Alzheimer's patient.

So often, Alzheimer's Disease is spoken of in whispers. Indeed, in my own family, there are those who would prefer that we not speak the name of my mother's illness but what's the point of that? Personally, I refuse to be silent. Alzheimer's Disease is just that - a disease. It's one that some people get and that others are fortunate to avoid. Others have had this disease before her, others will have it after her. There are others who have it now. I am far more focused on the fact that while the disease may significantly change Mummy's future, it doesn't affect her past.

Those who suffer today were once healthy and while they were, they made their mark. The credit union man, a former high school teacher, my mother. All of them had vocations through which they served a greater good. When he was well, Mr. Q the credit union president, built that credit union and built the wealth of the credit union's members. He did so by spending many years working at his vocation. My mother spent 15 years working at a school for lower performing students ages 12 - 14. She was the first prinicpal of that school, and one of a very small number female principals in the 1970s. She made her mark. There are many men and women now making their own marks in the world because of work she and her staff did. None of that changes because she now has a disease that will rob her of the memory of the great work she did.  When I speak of my mother, I do so with no small measure of pride.  She's still who she was for the moment, but even when she isn't my pride in her accomplishments will be no less.

The song Mummy chose as the school song, "The Impossible Dream" served as a guide for her work, the work of the staff and the efforts of the children. My sister and I now have our own Impossible Dream, our own "unbeatable foe", our own "unbearable sorrow" but difficulties aside and in spite of the uncertain future,  we will "run where the brave dare not go". Mummy's vocation is now her legacy. Alzheimer's may take her memory of who she was, but it matters not. She dreamed her impossible dream and lived it. So did a good many other Alzheimer's sufferers. Why whisper their names when you should shout?  Name a building dammit if they deserve it.


Here are the lyrics to The Impossible Dream.  The song was composed by Mitch Leigh, with lyrics by Joe Darion. It was originally written in 1965 for the musical Man of La Mancha.  Enjoy.

To dream the impossible dream
To fight the unbeatable foe
To bear with unbearable sorrow
To run where the brave dare not go

To right the unrightable wrong
To love pure and chaste from afar
To try when your arms are too weary
To reach the unreachable star

This is my quest
To follow that star
No matter how hopeless
No matter how far
To fight for the right
Without question or pause
To be willing to march into Hell
For a heavenly cause

And I know if I'll only be true
To this glorious quest
That my heart will lie peaceful and calm
When I'm laid to my rest

And the world will be better for this
That one man, scorned and covered with scars
Still strove with his last ounce of courage
To reach the unreachable star!

Thursday, October 14, 2010

Inside out

Apparently, three Sundays ago, while I was still out of town, Mummy went to church with her dress on inside out.  I'm so glad I didn't know this one week later when I went to church feeling all good about myself and my situation.  Actually, when my sister mentioned it to me on the following Monday or Tuesday, I was quite embarrassed.  But what's the point of being embarrassed about these things? They will happen, more and more as time goes by.  The trick, I think, is rolling with them.

From time to time, things will happen that will allow me to see clearly, how far we are from the starting point.  Mummy talks a good game and has excellent coping skills.  She can 'make as if' with the best of them.  There are times when I even forget that she's not herself or perhaps those are just the times when I'm deluding myself that she's still "Mummy" at all.  Whatever it is, there are events that force me/us to see clearly where we are and what we're dealing with.

Take for example two days ago when mother awoke and was asking for her teeth.  She doesn't wear dentures nor indeed does she need them.  For whatever reason, she either couldn't feel her teeth or she was looking for something else entirely but couldn't bring the right word to mind.  I felt that she might be looking for her glasses which she lost several weeks ago, but she was standing in front of the dining table preparing to have breakfast.  My sister assumes that she really was asking for her teeth.  What might have brought that on?  Heaven only knows.

Then, as I said, a few weeks ago she put on her dress inside out.  What's particularly interesting with this, is that the dress zips up the back.  Can you imagine the contortions she would have had to endure to get the dress zipped all the way to the top, with the zip tab on the INSIDE rather than on the out?  And this wasn't the first time this particular feat had been managed either.

Then there's the food thing.  She's never hungry.  She doesn't feel hunger, which really means that the sensation that the rest of us interpret as 'hunger', means nothing to her any longer.  The wonder of this illness is that it shows you starkly, that EVERYTHING is learned.  The suck reflex with which children are born, is pretty much all that we come with.  When the scientists talk about 'tabula rasa' [the blank slate], they really mean blank.  

As I watch and wait for the next shoe to drop, and the next and the next and the next, I realize that in time there won't be anything left to lose but the suck reflex.  My mind boggles.  'Tis too much to take in sometimes, so we stay in today and leave tomorrow to fend for itself.  What is it that the Bible says? "Sufficient unto today is the evil thereof?"  Sounds about right.

Tuesday, October 12, 2010

Meal Time

Meal time is not a happy time.  Every meal requires negotiation.  Par for the course I guess but it does wear one down.


As the condition deepens, tugs of war will become more and more a part of daily life.

Over the last weeks, Mummy has been deteriorating noticeably, I think.  Of course, I've been away for nearly three weeks, so what I see is a marked difference from what I was dealing with when I left mid-September. In the intervening span of time, that intractability so well known as a part of the dementia/Alzheimer's experience, has set in.  I have referenced this before - refering to it in the past as having to say everything twice - but now it's not just a simple case of having to repeat things, we've actually transitioned to simple (and pretty absolute) refusal.  And being a little on the passive aggressive side, Mummy simply ignores what you recommend and does her own thing, i.e. nothing.

The reality of this disease is that the point comes when the patient begins to flex some decision-making muscle and this seems to be where we are.  I was asked today, "Why do you think you have to tell me to go and take a bath?"  She was understandably a little peeved.  Heck, I'm peeved that I have to tell you, but if I don't, days will go by before it occurs to you to bathe.  These are the realities.  From a caregiver perspective, it's unfortunate that there's just enough executive reasoning capacity there to challenge.  But that's from a caregiver perspective.  From a patient perspective, I would imagine that there is some resentment of my intrusion into her management of her personal care routine.  From the patient's perspective, resentment is a good thing.  At least she can still feel it.  At least she can still feel something.....anything.

While her flexing results in my stressing, it is preferable to the other option, where she is completely  incapable of participating in her own care.

Thursday, October 7, 2010

Diamonds and Stone

There's a John Denver song that contains the lyric, "some days are diamonds, some days are stone".  I'm singing that today because today my friends,  is a stone.

We've changed the dosage of one of Mummy's medications. This has meant that for the since Monday, we've been battling nausea.  While that seems to be passing, what isn't passing is an intractability in the patient.  I'm not sure whether the intractability is a side-effect of the medication or a side-effect of the disease.  Whichever the source, Mother doesn't much want to do anything that I suggest.  

Yesterday, I had to call her three times for each meal.  Today, I've already asked her three times to take a bath and we've yet to see any move to get to the shower.  The real trouble is that she doesn't understand why I have to tell her these things.  Herein lies the problem with the disease.  How do I say to you that if I don't tell you that it's time to bathe, you won't?  How do I tell you that if I don't remind you to brush your teeth, you won't?  How do I let you know that you're losing executive functioning capability rapidly and in the absence of such capability, you'll wear the same clothes for 5 straight days if allowed?

What no one tells you, nor indeed can they tell you, about this disease, is that in the earlier stages it's not the doing that wears you out as much as it's the struggle to get the patient to do.  I suppose when the patient no longer has the intellectual wherewithal to challenge the caregiver's suggestions things get easier psychologically (at some level), but so very much harder physically. 

My head is spinning.  Clearly, there have been changes in the two weeks that I was away.  This thing is like a freight train.  It just keeps moving.  All we can do is hang on for the ride.

Sunday, October 3, 2010

What I now know

I've just returned from a trip home to clean out our home.  Among the things I found there, I believe I may also have found part of the reason for Mummy's current psychological *drift*.

We were not wealthy, not even close, when I was a child.  Mummy frequently had to 'rob Peter to pay Paul', as we used to say then.  There were not a lot of extra pennies floating around anywhere.  My sister and I rarely had the latest and most fashionable garments.  In fact, I recall that when sailor collars were 'in', the only reason I owned one, was that one of my pairs of pajamas had such a collar!  

Still, I wouldn't complain about my life.  As I went through the house, throwing things away, I realized that my mother managed not only to have us in a very nice (and spacious) home, but also, she managed to surround herself with things of beauty.  Yesterday, as I was packing, I decided to try to bring back this picture of a pensive old woman, as it was one of Mummy's favorites.  Obviously, I succeeded in bringing the picture back without damage to frame or glass.  Yay me!

My point though is that in the years since we have been in this country, my mother has made no attempt, none whatsoever, to indulge her finer self.  It's as though she was waiting to return to that part of her life 'at some point'.  The problem was, she didn't know when that point came because she had no real plan in her head.  But that right there - the unwillingness or inability to plan - is a story for another day.

I worry about folks who put off life until tomorrow.  Surely they know that tomorrow never comes?  Surely they know that today is all that we have?  As I sought to rid the house of all our 40 years of this and that, it became clear to me that one of Mummy's challenges has got to be the loss of access to things of beauty.  This picture is one of four or five pictures that I would have liked to bring.  One of the others is an old, old picture of a pair of grandparents helping their grandchild with what might be her homework.  That's an image that would resonate deeply with my mother, a life long teacher and the daughter of teachers (who have helped her daughters with more than a little homework).  Then there are the two pictures, collages really, that were given to her by students of her school as she retired.  And there's the Gaugin painting "Ta Matete" that I've seen so many times around the house and yet never knew it to be Gaugin. Why would I? It was just this picture my mother had hanging on a wall: Paul Gauguin - Ta Matete.  Sure ours is only a print, but it meant something to her to own it and to have it in her space and yet, since 2001, nothing has replaced it in her universe. 

I understand much more now, about her, about the necessity to feed our spirits with food, drink, spiritual things and beauty.  What a terrible thing to so plan (or not) your life, that you make no room to do that which enriches your spirit! What a terrible thing to leave your home full of beautiful things and wondrous music (she had a significant collection of jazz records which seems to have *disappeared* - ie. been taken by the last tenant) in order to achieve some unspecified end!  The end is not all that there is to life.  For all her intelligence, she seems to have missed this particular life lesson entirely. 
So I've brought one picture, I've brought her favorite tablecloth (pictured) which we'll use at Thanksgiving or Christmas or both, and I've brought her the one remaining china egg cup. I will try to bring other things should I return home any time soon alternatively, I'll have someone send them to us.  I understand now, much better than I did just 3 weeks ago.  These things matter.  I hadn't realized just how much they mattered.  The things I've brought are only stuff, true, but they are the kind of stuff that add meaning, depth and richness to our lives. They are things of beauty, things that speak to who she is at her core.  Whatever we can do to continue to reach that spot in her and keep it alive, is the right thing to do I think.

Insight is such a blessing.

Thursday, September 9, 2010

Hooks and Eyes


About a week ago, I went to have my shower and found that the end of the shower curtain was hanging.  Huh?  I know I haven't lost my mind, so I was struggling to figure out where the curtain hook might have suddenly disappeared to.  It wasn't on the floor, nor was it in the tub. It wasn't caught in the bath mat either, waiting to poke the life out of my foot.  Where the heck was it?  In the back of my mind though, I knew where it had gone.  It was going to be a while before I had proof, but I knew.

Yesterday, about 2 weeks later, I found the hook.  Mummy had taken it to hold some papers together.  I didn't bother to take it off her papers.  This is her 'thing' or one of her 'things'.  The pieces of paper.  Mummy had a career as a school principal.  There were many, many, many pieces of paper.  The bits and pieces probably make her feel connected to something important.  Whatever the need, who am I to take that away? 

The glasses are gone again.  A few weeks ago, they were left at a friend's house.  Fortunately, they were found and we went round there to collect them.  This time however, they may have been left at the Senior Center and since Mummy won't be back at the Senior Center for at least another couple of weeks, my guess is that this time, they're gone for good.  The problem with this of course, is that in the current fiscal emergency, replacements are going to have to wait a moment.  The downside of the waiting is that when we go to church and she can't read the bulletin or see the hymns, she cries.  What to do?  I can't manufacture a pair of glasses nor indeed the money to buy a pair, they just have to wait.  Fortunately, she doesn't generally remember her crying jags, so the distress is only momentary.  Imagine being thankful for a failing memory.  It's odd to be grateful for forgetfulness, but in this situation, we have to be. 


We've been having quite a few good days.

This morning, Mummy responded, when asked to take her tablets, "Last thing last night, first thing this morning." To which I responded, "And do you know why you remember that you took them last thing last night? Because you took them last thing last night. So let's just take 'em, first thing this morning."

Tuesday, August 31, 2010


I've said this before, but it's worth saying it again. This is a disease of extremes.  While three weeks ago, Mummy was totally confused and didn't know where she was or why, a week later, she was able to report to the Monday caregiver something that had happened at church more than 24 hours earlier.  Lord this disease can give you psychological whiplash!

Since that Sunday three weeks ago, all has been well with the world.  No tears, no discombobulation, no confusion.  Nada. We cool.  Obviously, the day will come......but in the interim, we trudge along.  The sooner I get a new professional opportunity or start my own business, the sooner we'll get caregivers in here eight hours a day.  I've found that Mondays are the days when she is most like her old self. Perhaps it's that pride thing that kicks in and makes her stand up straight and make real conversation.  Whatever it is, it's good for her.  So onward ho.

So it is. Maybe tomorrow I'll write about the famed 'donut hole' in Medicare coverage.  

Sunday, August 15, 2010

And so it is

So here we are.  Last night Mummy had her first episode of 'sundowning'. 

Things were going along as usual, when all of a sudden, she didn't know where she was or why.  We ran out of one of her medications and it's been more than two weeks (probably closer to three) since we last administered them.  [Many requests to the doctor later, I've had to switch back to the original gerontologist, though I'm not entirely confident about his skills, but that's a whole other story right there.]  Anyway, last night I administered the outstanding pill for the first time in some time.  Some time thereafter, Mummy's brain just switched off.  It was similar to a computer crashing and then coming back online having lost everything beyond some unknown moment in time.  I don't know that the two things are connected, but I'm just logging what happened at this point.   

Usually, if there's a hiccough with Mummy's mind, we can offer food and beverage and things come back online eventually. This was not one of those events.  This time, nothing helped.  She drank two or three 8 oz glasses of water, but nothing.  She eventually went upstairs to bed (led by her granddaughter because she suddenly didn't know the house) and came back down, once, twice, confused, turned around, lost.

This episode was much, much worse than we've ever seen from her before.  As bad as it was last night, it got worse this morning because on waking we found that she didn't know either of us.  She answered when spoken to, but when prodded to express her obvious confusion, she admitted that she didn't know where she was.  My sister's typical response to this is to ask a series of questions that begin with her name, where she is and who we are.  This morning, she didn't know the answers to most of the questions asked.

This is how it goes.  The result of all this psychological drama, is that it took some time to get her into the bath and dressed for church.  We got out the door, but were quite late for church as a consequence of this morning's run in with Big Al (zheimer).  She evenutally got her feet back under her and a couple of hours later, she had no recollection of the distressing events of the morning.  Blessed forgetfulness I guess.

Tuesday, August 10, 2010

Sickness & Shame

There's a connection between sickness and shame.  Well actually, the connection is that there are some people who see sickness as a source of shame.  They, I'm finding, make for difficult patients since they spend more time trying to cover up their illness than trying to deal with it in a healthy way.

My mother's family seems to have this affliction.  I recall several years ago, my cousin was having surgery.  We all lived fairly near to each other, indeed, he had grown up with us through our elementary school days and for several years in high school as well, and yet, when he was hospitalized, his mother never said a mumblin' word.  She borrowed the car to visit him at hospital, and in her anxiety had an accident.  I believe to this day, that were it not for the accident, we wouldn't have known that he was in hospital at all. 

Fast forward many years, and here we are at my mother's illness.  My aunt rarely calls, though she did call one time and I ran interference, so she might claim that I am preventing her from gaining regular access to her sister.  For that claim to be true though, she would have to have tried and not been allowed to speak, and that doesn't happen.  Mummy on the other hand, has this whole "stiff upper lip Jeeves" thing going.  She will wake up not knowing where she is or perhaps who we are, but "Jeeves" won't ask.  She'll sit in her room and rub her head and hope that something will come to her.  Of course, it rarely does and there is no benefit to telling her day after day that if she's confused she should just ask.  She won't remember having had the discussion the next day, nor indeed an hour later.  I do wish though that somewhere in her soul she could sidestep the shame of her confusion.  We would all be much better off.

So we plod on.  Rather than fret over the fact that she is ashamed, we simply embrace that this is where we are and plod on.  It's not always easy.  Yesterday when the strawberry  banana juice was used as milk for the cereal I had a real moment, but I stiff-upper-lipped it and moved on.  What is there to be ashamed of exactly?  We know enough about this disease now to know that there isn't anything that we can do to prevent it.  My sister and I are trying as best we can to mitigate the damage: regular healthy meals, fruit, exercise, weekly outing to the Senior Center, a granddaughter and whatever else we can come up with.  Shame has no place in this equation.  Would we be ashamed if she had cancer?  Alzheimer's disease is sad yes, but shameful?  I think not.

Monday, July 19, 2010

Bras and Popcorn

Several years ago, when my aunt first started her decline into the haze of Alzheimer's, we found that things used to disappear.  She would move things and of course, being unable to remember that she had moved stuff, great searches would ensue.  Keys, glasses, mail, anything that wasn't nailed down was a target.  It seems mother is getting to or at that point.

A couple of weeks ago, my sister served my niece popcorn in a cute little popcorn cup.  The cup is a mini version of what you'd get at the movies.  Mummy may also have been served some popcorn in a similar way.  As I recall it, the popcorn was consumed and the containers washed and left next to the sink to dry.  Consider my surprise then when I go to Mummy's room several days later and find the popcorn cup there.  I scrunched my brow, said, "Huh?" and removed it.  A few days later though, there it was again.  "Huh?" But this time, I figured it was one of those 'picked it up without knowing I picked it up' things.  Rather than get upset or invest any energy in it, I just moved it again and this time, put the two cups away so that they couldn't drift up the stairs again.  Matter fixed.

Well that matter might be fixed but the issue remains.  For the last two or three weeks, I haven't been able to find one of my bras.  I couldn't for the life of me figure out where it might have gone.  It wasn't in the wash, it wasn't in my room, it wasn't anywhere.  This morning though, as I was pulling out Mummy's clothes for the day, I found my bra.  In Mummy's room?  Oh right, in Mummy's room.  This isn't the first time this has happened and my guess is, it won't be the last.  One more fascinating aspect of the journey into the night.

Friday, July 9, 2010

Childlike Joy

During our childhood, Mummy never indulged herself.  She didn't buy herself clothes, shoes, handbags, books or anything else, regularly.  She couldn't indulge herself because she was the sole on site parent of 3 children, her two and her sister's one.  There was no way, with three children in private elementary school, that she could spend money on frivolities.  Her adult life therefore, was spent spending on growing children and their many needs.  What I'm realizing now is that although we deny ourselves intellectually, we can't really continue to deny our spirits the little lifts doing for ourselves give us, and not pay a heavy price later on.  So it is with her now, whenever new clothing appears.

Every time Mummy thinks there's a new piece of clothing in her room one of two things happens.  Either she returns it to my sister's room thinking it must not be hers or, as just occurred tonight, she trots it out with the excitement of a child finding a Christmas present.  In today's instance, the 'new piece' was a something that's about 10 years old. Likely it's older than that but let's say 10.  It doesn't look new, it certainly doesn't have that new clothes smell, but the sheer, unbridled joy at finding it.  Never mind this is a garment she wore just yesterday. 

The only epiphany I come away from this with is that self-denial is really only a temporary thing, at some point, someone, either you or your caregiver, is going to have to fill that hole.  I'm thinking that perhaps it might just be best to find a way to squeeze the fulfillment of your own needs into your life.  No point waiting until just before the curtain call to put yourself first in your life.  Perhaps what is wonderful about this disease is that it strips away our ability to lie to ourselves about what we need.  All those years when my mother was buying little or nothing for herself, she never complained, but clearly, somewhere deep down, she was feeling deprived and now, sheer, unbridled joy at finding a 10 year old pair of 'new' shorts.  Interesting.

Monday, June 28, 2010

Weird Science

This is the weirdest ailment.

I was just re-reading an old post that talked about having fewer good mornings, but that's not where we are these days.  What I've come to terms with is the fact that Mummy wakes up slowly.  Some days it's almost 10:00 am before she emerges from her cocoon.  Perhaps it is that we are clearer about how to treat with the morning slowness but mostly, mornings are fine.  Not great, but fine. 

It may well be that since I'm 'between opportunities', I have the patience to simply proffer the necessary information and move on.  When she awakes, if she has to bathe and dress immediately, I'll just tell her what day it is and what's on the agenda.  Things only get really hairy when I'm rushing.  When I rush around, I either don't want to talk at all, or I want to be able to talk in short hand.  Short hand does NOT work for Barbs.  She needs enough information to formulate some sense of what is going on and what might be asked of her.

Today might be a particularly good day because we've just recently begun a Monday ritual of having a caregiver come by and take her to the nearby Senior Center.  If I were mobile, I might take her there a couple of times a week, but using the services of the caregiver gives me a break and gives her someone else to interact with - not a bad thing for either of us!

I'm no scientist, but I'm really thinking that the combination of the way we're insisting on quality food and the periodic (if infrequent) exercise and now the stepping out with Ms. Curtis (the caregiver) may be yielding some results.  The old English hymns we play on difficult mornings may also be a help. 

Saturday, May 15, 2010

Just when you thought...........

Last night, Mummy went to bed without medication.  This will happen from time to time when something in the night time routine changes.  Last night, it was that we were having pizza for dinner.  Why that caused me to forget the drugs I'll never know, but so it was.  Funny thing is, she woke up this morning crystal clear (mind wise).  Oddest thing.  She got up early (I didn't have to wake her) and she went downstairs and got herself her first glass of water. 

Now, you have to understand that with my mother, the first thing she will usually reach for, is a cup of tea.  The thing has no nutritional value, but she's got some kind of addiction to it.  At any rate, this morning, she gets up and gets herself water.  And this after not having had any meds?  Oddest thing.

Anyway, we had a pretty good day but tonight the curtain fell.  First there was the matter of the reorganization of her drawers, one of her favorite time stuffers.  Then, there was the matter of the medication.  The meds were proffered but, thinking that we were still in the 'normal' zone, no oversight was provided.  When I turned to her not too much later to ask her to put in her eyedrop, she got up from the table, went to the sink and spat out what she had in her mouth.  After a couple minutes of investigating, we determined that she thought that she had put the eyedrop into her mouth.  Turns out, she had actually taken the second of her tablets and spat that out, thinking it should have been put in the eye.  I had noticed this kind of confusion before but never really worried too much about it.  The notion of eyedrop is for eyes and tablet is for the mouth, is breaking down.  These things are, after all, conventions, learned behaviors and Mummy is unlearning everything.  Clearly I should be concerned.  Mummy no longer knows the difference between an eyedrop and a tablet.  I'm guessing that going forward, I'm going to be putting those drops into her eyes myself and standing at her shoulder as she swallows the tablets.  So it is.

Friday, May 14, 2010


No matter how hard I think I have it, there is always someone else who has it harder. I have support - moral and physical; and we were smart enough (or lucky enough) to get long term care insurance which helps with the financial challenges, and finally, we are lucky enough to have other options and resources to help keep this whole crazy thing going. At the end of the day, I think we're managing to plod through this messy bog without the usual amount of destruction being left in our wake. Trying to see upside here. Trying real hard.

Being unemployed (scratch that, 'between opportunities') has a real benefit here. Surprisingly part of that benefit is financial. Don't have to pay for services if you're at home to provide them. But there are other challenges presented by the jobless state, not the least of which is the damage to my longterm professional prospects. I try not to think too much about these things. There's a whole lot I try not to think too much about.

Sunday, May 9, 2010

Mother's Day. Whose Day?

Mummy had a call from home today, from someone with whom she has a long and complex history of about 30 years. He called to say Happy Mother's Day. She wasn't available to take the call (sleeping) but my sister later relayed the message that he had called. Her response was the standard, "Where is he?" I now know that her whole sense of place is completely topsy turvy, so this response isn't really a surprising anymore. More than that though, I'm starting to think that this response is a delaying tactic as she tries to pull up some memories related to the name. The next part of her response gave me pause and I'm still in "pause" mode. Finally she admitted that she could remember the name, but not his face. This is big.

I know that this is the way of things, but I have to admit that I'm really hoping that tomorrow, if I mention his name, she'll be able to remember his face. I'm thinking it may be time to start whipping out the pictures and going through a daily exercise of talking about the people in those pictures.

One more thing lost, hopefully to return tomorrow. Or not.

Wishes, Horses, Beggars

This morning I had to give up part of my workout. I woke up early but didn't jump off the bed. I decided to have a little lie in and read my book. Well that may be OK for other people, but not so much for me in my current situation.

About an hour later, I finally decided that I wanted to exercise. Under different circumstances, I might have been able to swing it. If I were responsible for only me, I definitely would have been able to get it all in. But that is not how this works.

I go down to the basement and start doing my thing. Next thing I know, I can hear my niece coming downstairs in her shoes (a sure sign that she was ready). Oops! Trouble! Gotta adjust my plan because Mummy wasn't awake yet. She often has to be awakened if you want her up at a reasonable hour. So, I had to quit my workout, mid-exercise, bc my responsibilities beckoned.

Sigh. Upside: I workout 5 times a week for 45 minutes to an hour each time. So one shortened workout will not hurt me. It may fret me, but it won't hurt me in the long run.

If wishes were horses, beggars would ride, and my workout would never be interrupted.

Thursday, May 6, 2010

Morning or Evening?

Several months ago, quite by accident, my sister and I discovered that giving Mummy her medication at night led to better mornings. Unfortunately, with the disease progressing, we're having fewer and fewer good mornings.

This is par for the course I imagine, but it's a little sad that something so simple that had yielded such a good result (for her and us), now seems to have lost its efficacy. What this is going to mean going forward is that I'm going to have to insist on the exercise. We have no proof that it works, but there has to be some benefit to moving the blood around in her body more efficiently.

Saturday, May 1, 2010


I'm leaving early to get to church in the morning, so I have to go set things in place from tonight. This requires me to be more responsible than maybe I want to be, but so it is.

Ran down to the basement, got out Mummy's dress for tomorrow and the selected my own garments for church. Now I have to figure out how to get Mummy up and at least in the shower before I leave in the morning. If I don't at least get that or the breakfast done before I leave at 8:30, my sister will have it all to do and it's tough enough for me to handle Mummy. If I don't get my part done in the morning, she'll be trying to do the 7 year old and the 74 year old. My guess is, she'll get to church, eventually, but probably without either a bath or breakfast or both.

Stay tuned.

Made it. Took a bit of doing but we made it. Critical to the success of this morning's mission was getting Mummy up early and in and out of the shower before I came down to have breakfast. It's like performing delicate surgery. The slightest miscalculation can throw the entire operation into peril.

Friday, April 30, 2010

It's not deliberate

You have to understand that it's not deliberate. None of it is deliberate. Once you get that, you can survive the onslaught. And it definitely is an onslaught.


This is a quickie.

One of the realizations that you have to come to with this disease, is that as it progresses, you the caregiver, have to be prepared to be in last place. It's not a pleasant realization.

When it comes to meal time, you eat last; when it comes to going out, you dress last. You are generally last. As a parent, this is normal but I'm not familiar with any of this because, I'm not a parent.

I am believing strongly that all this is preparation for something else, I just can't for the life of me think what it might be.

The reason all this comes to mind now is that I've just (at 12:30 pm) realized that there isn't enough in the fridge to feed us both at lunch time (in about 45 minutes). So I've just put some soup on. There's plenty in the fridge for Barbara so she'll be fine, but I'll be eating last. Again.

Sleeping Beauty

My mother has always been a sleeper, but this is getting crazy. It's 9:35am and she's been in bed since probably 9:00 last night.

Throughout my childhood, my mother always claimed that she couldn't rest sitting up. She had to lie down (and ultimately, sleep) to rest. As a child not much in need of rest myself, I simply accepted her explanation. Who was I to argue? As an adult though, I have often wondered whether my mother's need for 'rest' wasn't really some kind of escape from a life that hadn't turned out quite as she had hoped it would.

Fast forward a couple of decades. These days Mummy seems to be sleeping recreationally. I have to wonder how much of this is part of the disease and how much may be senior depression? Mummy is always the first to go to bed but that's not new. She has always been the first down. Nowadays though, she's not only first down, but last up. That part of the equation is definitely new as she used to be a very early riser.

I hear movement upstairs now, so she's awake. I'll give her a few minutes before I call her for breakfast. Mornings are tough.

Thursday, April 29, 2010

Par for the Course

Well, I gave in. After another tussle over what not to wear, I finally pulled the dress clothes out of the wardrobe and put them in the basement. It's just too much to keep trying to 'reason' with Mummy about what clothing is appropriate for what situation. So rather than keep pulling and tugging over it, I just pulled out the clothes and moved them to the clothing rack in the basement.

This is par for the course it seems. The nature of this illness is that with every passing day, some new area of reasoning disappears and so to cope, we must find work arounds. This is my work around. It's not a good one for me, since it will mean that I must either find clothing the night before (one more thing to be added to the 'things to do' list) OR I'm going to be running up and down two flights of stairs to bring the clothing up from the basement. I shouldn't complain I suppose. A little exercise never hurt anybody.

Tuesday, April 27, 2010

I Told You So

One of the many dreadful things about this situation is, quite frankly, what it's taking out of me. That may sound self-centered, but the reality is that I have to take care of me if I expect to be able to give care to anyone else. As primary caregiver, I'm on call several hours of the day, the trouble is that I'm also primary finance manager for the resources needed to support this condition. Had I been listened to years ago, I would likely still be primary caregiver, but my role as finance manager would been diminished because a plan would be in effect.  There isn't much benefit to me now to saying, "I told you so" (ITYS). ITYS doesn't help me juggle the many balls I must now juggle, nor does ITYS help me manage the critical resources or ensure that they last for the duration of the illness. Most importantly, ITYS doesn't make any of this any easier. 'I told you so' doesn't even make me feel better. Why would it?

The trouble with ITYS is that it's nothing but a Pyrrhic victory. You win, but ultimately you've lost. In our case, we've lost an opportunity to be ready for the inevitable challenges of aging and illness. First of all, I lost the communication round of the game. I wasn't able to communicate the urgency of the need nor the importance of action. Second, we also lost the time advantage that we would have gained had we followed through on my recommendations six years ago. Third, and the reason that hurts most, is the realization that not only was I right, but that my begging and pleading (and cursing and fighting) was, unbeknownst to me, going to protect my own sanity.

When I was making my recommendations I couldn't know that it was my sister and I who would be next bulls eye on the illness radar, not that it really mattered. I was making recommendations because they were needed. The actions I suggested described the only sensible path that could be taken given our circumstances. At the end of the day, we did nothing so there's no family plan in place though my sister and I do have a little plan. Our plan is still in its infancy, but it's moving in the right direction and growing slowly. Herein lies the reason for my juggling present and future. We have to try to manage today and tomorrow simultaneously. It's tiring just thinking about it, not to mention doing it.

I stand by my assertion that today's care has to be paid for out of yesterday's (and preferably last year's or last decade's) savings and investments. I also stand by my assertion that a family does better if it deals with the inevitable financial challenge that long term illness presents in the cold, harsh light of day, before anyone is ill and when family members can bring an unemotional clear-headedness to the discussion. Unfortunately, as I've learned, discussions of illness and aging, with the people who are likely to become ill when they age, is dangerous work. Apparently, I'm not certified to perform such work. So I muddle through and on, working in present and future modes simultaneously. This is the life. It's going to be quite something when we come out the other end having prevailed, as I fully intend to do. We're almost there now, but I'd really prefer to be there already.

Tuesday, April 20, 2010


There's a thing with Mummy and drawers.

One of the time fillers she seems to use is to move clothing around. So all my work from last week, moving winter clothes and washing winter clothes and bringing out the spring/summer wear and arranging it properly in her drawers must now be redone. Barbara has moved every single piece of folded clothing. The things in the closet have fortunately escaped her attention.

Sigh. Someone suggested to me last week that I should remove all the clothing save the pieces for the current week. I'm reluctant to do that for the simple reason that it will mean trekking down and up two flights of stairs, but it's really looking like I won't have too many choices. There is no controlling what Mummy is going to do in her down time. That being the case, I can either just leave her to it (and suffer the consequences when it's time to dress or select clothes) or I can move the clothing and add another activity to my schedule.

Thank God I'm currently between professional opportunities. But what'll happen when I get a job? Where's the energy going to come from to do all the necessaries?

Sunday, April 18, 2010


Several months ago, Mummy tried to do her own laundry. It didn't turn out well.

We discovered when Mummy tried to help herself with her laundry, that she no longer knew which machine did what. Where we come from, clothes are generally dried on a clothes line, out in the backyard. There are terrific breezes and plenty of hot sun and in the rainy season (about 6 months of the year) there is usually plenty of warning when the rain is coming, so you can run out and pull things down should it come to that. I say all that to say that we are therefore, very familiar with washing machines but far less so with dryers. The consequence of this is that the memory of the dryer is a recently acquired one and therefore, one of the first to be lost. As a result, Mummy looks at these two pieces of equipment sitting side by side, and to her, they are both washers.

In an effort to be helpful, Mummy tossed her clothing into the 'machine' and threw the soap in and shut the door. I can't say whether she actually turned the machine on, I doubt it, but in her mind, she had put her laundry in the machine. The trouble was of course, that she had put her dirty laundry in the dryer. With soap.

Several hours later, my sister went to use the dryer only to find clothing and a handful of soap sitting in there. Well she wasn't happy about the requisite clean up but hey, what do you do? This was fairly early on in the process so I still thought (and sometimes still do), that a conversation, an explanation would suffice. It didn't. Weeks later, the same thing occurred again. This time, instead of offering an explanation, I came to the computer and printed two signs: Washer & Dryer and affixed them to the two items in question. This seemed preferable to having to go through the cleanup a third time.

My efforts might have been useful at an early stage of the disease but not anymore. Nowadays, Mummy doesn't make any attempt to wash her clothing at all. Part of that is a consequence of the disease. Since there is no sense of time, there is no sense of having worn the same piece of clothing for days. There is no sense of needing to wash clothing at all. Beyond that, there is something else. Mummy doesn't like to be wrong. Once you've had to tell her about something and require her to adjust her behavior, she checks out. In her mind, she's been 'corrected' about the use of the washing machine, so now she doesn't use the washing machine. At all. Many months ago, she and I argued about her using my toothbrush, she recalled it as me arguing with her about using my toothpaste. So now, she doesn't use any toothpaste to brush her teeth unless advised to do so. There are other examples of this in everyday life....the dish washing for example. Because we often ask her not to wash (she doesn't see well so the dishes tend not to be perfectly clean when she's finished), she will come to the full sink and wash only the dishes she has used.

These behaviors are completely new for my mother. When we were young, she would shout and carry on if any of us went in to the kitchen and washed only the utensils we had used. And yet, here we are with her doing precisely that. She would carry on, if we talked about my this or my that in reference to items that were common property. And yet, here she is now, not using my toothpaste. When the caregivers for Alzheimer's and Dementia patients say that the personality of the patient changes, it is so very true. We're seeing it now. Fortunately for us, the changes are manageable thus far. Lord only knows what's around the next corner. I don't imagine it will be as simple as dealing with soap in the dryer or toothpaste.

Thursday, April 15, 2010

Rabbit Holes

In Alice in Wonderland, Alice falls down a rabbit hole into a strange new world. Call me Alice.

I keep thinking that she's all here but really, it's I who am in the rabbit hole. This is a brave new world and I really need to come to grips with it.

What was it this morning? Nothing, and that's what's scary. This morning, Mummy woke up and instead of making her way downstairs to get her breakfast, she stayed in her room, fiddling with bits and pieces lying on her chest of drawers. The ability to determine that it's morning, my first priority should be food and water, simply no longer exists. So I had to push her out of her room to go downstairs and eat. As usual, the refrain was, "You haven't eaten in more than twelve hours. Food should be your first priority", but as in all things, there being no sense of time (and, I've discovered, no ability to translate sensations from the stomach into "I'm hungry"), that refrain is met with a blank stare.

She got downstairs and sat at her usual place in front of the prepared meal and....nothing. My sister had to instruct her to drink the water set out for her. It's clear that we're getting to the place where every meal will require direct instruction to eat. Actually, we're there already. She will frequently sit in front of a prepared meal for several minutes, neither looking at the food nor eating it. I have come to the point where I can just keep moving, but you do have to circle back to ensure that some consumption is occurring.

This is the rabbit hole. I wonder where we'll be going next?

Tuesday, April 13, 2010

To tell the I lost it

This morning we were to go to the doctor. Note the use of the past tense.

First, it was the bath. She's not aware that it takes her nearly an hour to get dressed and that only if I'm running up and down the stairs, making sure that the lotion is lavishly used, and the appropriate clothes put on.

A few days ago, we had lovely 90 degree weather (we're from the tropics, so 90 degrees is lovely for us). Today however, the temperature has dropped precipitously and an adjustment to the clothing needs to be made. When you add to that the fact that I've finally started transitioning her wardrobe - switching cold weather clothes for warm - what you have is a recipe for disaster.

As always, I selected and put out the clothing for Mummy to wear. She put them on (not without some complaint, of course) and then, after calling the taxi, I check on her to find her ironing a totally inappropriate blouse because according to her, "I 'ent wearing no set of black clothes". Sigh.

Well, I lost it. I canceled the cab and the appointment. I simply didn't have the energy to have a tug-of-war with Mummy over clothes this morning and then have to be responsible for transportation, appointment, alimentation and all the necessaries associated with an outing. Not today. I've taken the day off.

If you're looking for us, we're at home. Chillin'.

Saturday, April 10, 2010

Strong Medicine

Yesterday, I experienced full throttle, what Mummy's condition really looks like.

Mummy had a doctor's appointment on Thursday at which they fitted her with a device to monitor her blood pressure for twenty four hours. For a 'normal' patient, this would be no big deal. The patient would go home with the device and return the next day. My mother is no longer a 'normal' patient.

We went home with the device and at least once during the course of the evening, I was required to explain what the contraption was. She went to bed and it seems that at some point in the night, the device either came off or was removed. By the next morning, when the device had to be reattached, mother had no idea what it was nor why she was saddled with it.

What is worse, I believe the presence of the device exacerbated her condition. Obviously, I have no proof of this. My only evidence is that for the first time, I really saw what dementia looks like in my mother. No fewer than 6 or 7 times did she ask me what the thing was and where it had come from. The previous day was totally gone. Absolutely no recollection of having been to the doctor and any adjurations to the contrary, I now know that it is likely that more often than not, she has no recollection of anything further back than perhaps 5 minutes previous.

I have continued to live in a measure of denial pretending, or hoping, that Mummy is still fairly aware of her surroundings but I realize now that that is simply not the case. She is entirely dependent upon us to translate her surroundings for her; to give her hints as to where she is and when; to tell her who people are, and frankly, there may increasingly be a need for us to tell her who we are.

And so it is. This is the surreal world that is Dementia.

Tuesday, April 6, 2010

Two Times

Everything has to be said two times.

One of the most exhausting aspects of the early stage of this illness is the resistance. While she is yet able to be self-determining, Mummy self-determines. To that end, she resists every instruction. [And yes, they are instructions because the higher order thinking is no longer there, so offering information in the hope that she will make appropriate decisions is wasted time.] So you ask/tell her to put in her eye drops and she resists; you ask/tell her to get changed, resistance; you ask her to take her medication, you guessed it, resistance. The trouble with this, and I've said this before, is that since she forgets the instruction if it isn't carried out immediately, the onus is on one of us to repeat, return or rerun the course.

I'm not going to lie, it gets to you sometimes.

Tuesday, March 30, 2010

Visitors from Another Planet

A few days ago, Mummy had visitors. This was a great thing. It afforded her an opportunity to converse with others in a way that frankly, she cannot or does not, converse with us. What I had no way of knowing though, was that at several points during the course of the day, she had no idea who the people were. So while, 'conversation' was occurring, it wasn't real.

One of the frightening realities of this ailment is that time has no real meaning. Whereas for the fully compos mentis, we are able to hold on to a particular time frame in our heads (without any effort), for the dementia patient, time seems more fluid. At any moment of the day the patient can be in the past or the present. Time isn't fixed and no longer flows in a linear manner, so while I was thinking that Mummy was having a grand time with old friends from home, what I later discovered was that she was sitting there smiling, and asking herself who the hell these people were.

Mummy is the one who once told me that we see ourselves as we were at some specific point in the past. We were at the time, talking about someone who was wearing some unfortunately tight outfit. Barbara's explanation was that the person had a mental image of themselves that no longer matched the actual. But, Barbara went on to point out, what we see in the mirror isn't necessarily what's there, but sometimes, what we've always seen. So this individual was probably 20 lbs heavier than she thought she was and was dressing for the lower weight. Hence the unfortunate outfit. Transposing that thinking to our present circumstance, when Mummy looks at her friends today, she sees faces that look familiar but she still expects them to be as they were 20 years ago (because time isn't for her, what it is for us). So their voices sound familiar, the information they share sounds familiar, but there is a significant disconnect between the look of them and whatever remains in her head as her expectation of what they should look like. She 'remembers' them as they were back then and expects them to be that way now.

When you add to that the lost ability to see time linearly and what you have is a life of moments. Some in the present, some in the past. Perhaps even some in a time yet to be?

Sunday, March 28, 2010


Probably the most challenging thing about Alzheimer's Disease is the circling and with AD, everything becomes a circle eventually.

Let me explain. This morning, we asked Mummy to get dressed to go out. This is actually a challenging ritual for us now. As foreigners, we have had to learn how to dress for the changing seasons. A patient with a memory and higher order thinking disorder, has no real ability to research the weather before choosing clothes. Dressing therefore presents a significant challenge. Over the last couple of years, we have discerned that the best way to avoid the problem of Mummy arriving downstairs in the wrong clothing, is to simply select and lay out the clothing that she should wear. This way, we ensure that it is clean; pressed and most importantly, appropriate both to the occasion and the season. Would however, that Alzheimer's would allow it to be so simple.

We are at that stage of the illness where whatever we lay out is the wrong thing. Whatever clothes are selected are for some reason, rejected. The primary objection is that the clothes are 'not her style'. She either doesn't like the color or the length or the style. It's always something. Rare is the instance when our offerings are met with no refusal. Often, there is no real reason offered, just "I don't want to wear that". And so begins the 'circling'.

The routine goes like this: my sister or I proffer the clothes and leave so that she can get dressed. She will either put them on and then remove them, or she will put on something else entirely (which is likely to be something she's been wearing about the house for days or something that is too tired looking to be worn out of the house). She shows up for breakfast dressed in something other than what you intended her to wear, and a discussion begins as to why she didn't put on what was left out for her. You trot up the (15) stairs only to find that whatever you selected has been put back into the closet and you must begin again. Often, because so much moving of clothes takes place (this is one of Mummy's time fillers), it takes more than a couple of minutes to locate the garments you had spent some considerable time finding earlier. And so it is. Circle number one. After breakfast, she is asked to go back up and change into the clothes laid out on the bed. If you are very lucky, she does so without challenge. If not, you may have to make this circuit at least one more time before all is said and done.

The real challenge for me is the steps. Every time I have to trot up these steps to find the clothes, to find matching socks, to get the comb, to....well you get my point, I understand why care-giving takes years off caregivers' lives. It's exhausting!!! Fortunately, I've eschewed anger and resentment, because more than the 15 steps 5 or 6 times in the morning, it is they (anger and resentment) that shave days off life. So I'm going with the flow and I'm taking my circles as circuit training. It's just exercise really. That's all. It's exercise.

So here we are...

So this is it. By writing these words I am acknowledging that my mother is on her way to a place where only she will reside.

Mummy has Alzheimer's Disease. Well OK, she has Dementia but though the Dementias are many they all generally seem to lead to the same Isolation Island. The medication is the medication, but really doesn't stop (nor indeed does it seem to slow) the progress of the disease.

We've been on this road now for nearly three years. The first year, I was in denial I suppose. I was insisting that she function like the Mummy I knew, but essentially, what had already happened was that Mummy was gone and Barbara had joined us. Last year, I spent a great deal of time being angry that she wouldn't do things. She wouldn't try things and when she did, she did so very half-heartedly. Again, what did I know? I was busy with my own challenges and had little patience for half-hearted approaches to anything. Little did I know that 'half' was about 'all' she had to give.

This year, well this week, something changed. We went to the physician and her profile looked frighteningly like my grandfather's on his last day on earth. Nothing like the realization that you're on a journey to the 'other side' to give you a fresh new perspective. So here I am, like an addict admitting my addiction. She's traveling to a place where she will be entirely alone. My job, and I have chosen to accept it, is to journey with her as far as I can and make her as happy as I can along the way. More than that I cannot do. So, we'll go to the Kennedy Center when we can. I'll take her to museums when I can and make sure she stays in touch with friends (many of whom she is already beginning to forget), as best I can.

At the end of the day, I don't know how much anything I do will lift the clouds descending in her head, but I'd like to think that some of it does and will make a difference. As I said to a friend yesterday, I have to try to create happiness in the moment. Beyond that, God will have to supply the increase.