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. 


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.

Distance

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

Think 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.

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.


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. 

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!

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.

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.

Tug-o-War

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.

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.

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.