Today is as good as it gets…

“It’s difficult facing a loss, particularly when it happens slowly.

 The mourning comes in the most fatiguing of waves.”

- Anonymous

We decided that dinner would be a good thing, so out we went…the three of us, each with a different role.  There were a number of relationships amongst the three – a daughter and niece…a brother and uncle…a mother and sister; in a word a small family.

It is difficult to know what to say, because complexity does not lend itself to simple and clear sentences.  Her new gerontologist set the context, “Today, this moment, is the best that she will be for the rest of her life.   You will never see her this good again,” meaning each new day will be a little less functional than the day before – carpe diem!

In this situation, there is not a measure, like a ruler or weigh scale. Nor is there a predictive formula into which one can plug numbers to determine how quickly the disease will run its course…like an airplane with no instruments, the order of the day – fly by the seat of your pants.

You have heard the expression “…good is the enemy of great…” meaning that if one settles for good, they may never be great.  In this game, “…expectation and hope are the enemies of love…” meaning expectation and hope will keep one from full acceptance, and therefore the simple and overwhelming power of complete, open, total and selfless love.  You know the kind your dog or cat feels toward you…they don’t care what you look like, they don’t care about your status, or income, or education, or clothing…no, they just come to you for what they feel…that kind of love!

Selfless love…truly selfless anything is a hard nut to crack in life.  It is not that everyone is personally selfish in most things…some of us are socially selfish, meaning we do things for the greater good because we get some sort of reward from it.  It doesn’t always have to be an open reward, but if we are honest in our hearts, there is expectation of reward – open or subtle…healthy or not – that drives the action.

Selfless love requires complete surrender and that is a hard thing to do…it requires letting go of any sense of embarrassment, shame, expectation and/or desire to somehow shape the event.  The confession? In my life, there has been little more difficult!

A pragmatic consideration…

If you want to remain sane as you live with and/or in proximity to a loved one with Alzheimer’s – eliminate expectation and hope…in truth, they will eat you alive.  They are not helpful...for as surely as gravity ‘is,’ this disease is irreversible.

It is good to have hope and expectation there will be some successes in the world of clinical research that will spare the loved ones of others in the future, but right now…this day…in this moment, there is nothing that actually works.  The internal conversation?  Deal with it and move on!

There must be something…

It is easy to fall into the mindset that junk science, or no science, or home remedies that worked for a cousin twice removed…actually did work – you know, somewhere else.  It always seems to work somewhere else.  Hope and expectation with this disease is like trying to reach out and touch the horizon.  You can see it, yet the faster you approach it, the faster it moves away.  The maddening thing…fast or slow…the horizon knows your speed and remains just out of reach.

The human mind is not geared for failure…it doesn’t accept it well.  Brilliant, mediocre or slow of thought…barring some disease or defect, and until near the end of our life’s journey, the human condition is to overcome, question and then do it again in ever expanding circles.  Growth is an inevitable trait of life.  The idea of entering the arena and surrendering ‘just because’ is really unthinkable.

We are built to solve the problem, take the next step, get up when we fall, live to fight another day.  This is why it is so difficult to come to terms with the reality of an irreversible debilitating disease.

The sequence of denial…

Any port in storm…any thought process that does not confront the possibility of her slipping away from reality into the dungeons of lost thought.  

It must be:

·      Stress,

·      fatigue,

·      poor diet, or

·      lack of exercise.

Her behavior must simply be stress related.  The workload has been just too much.  She always performed at a high level, but sometimes we just can’t run and keep up the pace…maybe it’s just caught up with her.  Maybe a little ‘talk therapy,’ or vacation.  Why, it is just what the doctor ordered…yes that’s it.  Let’s suggest to her a break from work and a little counseling.  That will do it!

It did not!

On the other hand, if one were really fatigued, a short break from work would probably not be enough…a little longer break to get really rested up. The fatigue scenario plays right into the stress consequence.  Yep, kill two birds with one stone.  A break from work, maybe a little talk therapy and rest…what a great combination.  Now we will get somewhere.

We got nowhere!

When the simplest ideas fail, it is only because, we tell ourselves, we really didn’t consider the behavior changes might need a little deeper look.  Oh that’s it…diet.  Why didn’t we think about his earlier??  Good nutrition is really important!  Maybe by living alone she wasn’t eating well.  You know how difficult it is to cook for one.  Yep, let’s get one of those supplemental food programs where they send you power packed meals with all the important nutrients and then some. Good nutrition!  How could we have overlooked food?  That should help to settle things.

It settled nothing!!

Wait a minute…wait just one cotton-picking minute!  What were we thinking?  You can’t just provide good nutrition, you need to add the universal medicine…the medicine that is good for obesity, heart disease, chronic musculoskeletal problems, arthritis, and oh my God, it’s good for stress, helps with fatigue, works tremendously with good nutrition – Exercise!!

It was so simple, it almost got away from us, because, well, it is under appreciated and so…so common.  Of course, one has to do it to get the benefit, so we put on our cheerleader outfits and extolled to our loved one that a little exercise would be helpful.

It was no help!

The truth?? You can’t handle the truth!!!

All of this, of course, is a little more complicated when one can’t admit, the person with the “you know what” might possibly have “you know what.” You don’t even want to say the word, because…well because…because – oh, you know why! 

No, in fact you don’t!  You don’t want to say it because you don’t want to believe this thief could so completely violate the person you love…you don’t want to believe that ALZHEIMER’S – there I said it – could possibly happen to her!  Why, it would be unthinkable…it would be unfair…it would be unjust! 

The truth will set you free…

There comes a day when you realize the only person you were trying to convince there was a solution to the unsolvable, was yourself.  It is then and only then the real problem can be accepted, and yes – unapologetically and lovingly embraced.

So the three of us sat in the restaurant, and we fed my sister the first meal where she needed assistance to eat.  We forked the hamburger pieces and spooned the hot ‘fudge sundae’ milkshake to her trembling lips…and did it with sheer unadulterated joy.  We participated as a family appreciating one another and in a public place I would never, in my quietest reflective moments, have thought I could do.

“There were a number of relationships amongst the three – a daughter and niece…a brother and uncle…a mother and sister; in a word a small family.” 

Oh, and one more thing between the three…pure unadulterated, selfless love.

- ted