Caring
It is in caring for others that we find ourselves.
I don't honestly know if that is something I heard somewhere or something
that merely occurred to me very deeply recently. But it resonates as true
right about now, so I am going to go with it for the time being.
Caring for others is a giant pain in the butt. Often it comes without
reward, with frustration, and with much encounter of the less than charitable
sides of ourselves that we would rather never know existed. I have been
caring for my Mother-in-law, Helen, for about six months now, through
a steady decline of dementia and Alzheimer's Disease, and believe me,
I have learned things about myself I really didn't want to know.
We have been through a lot together. We have been through a refusal to
wear "defective" diapers. We have been through throwing all her new clothes
away only to wear the rags she brought with her. We have been through
rubbing fruit all over her hands and arms. We have been through playing
with feces.
We have been through walks to the bathroom that take twenty minutes to
get there and another twenty minutes to get back. We have been through
coming into the living room in diapers. We have been through flashing
breasts at the neighbors and hoping they weren't looking. We have been
through endless nights of going to the bathroom every half hour and crying
for assistance and getting no sleep for days.
We have been through movies that take four hours to watch because of interruptions
on the half hour. We have been through washing the urine soaked covers
of the furniture.
We have been through arguments of communication, when mother would use
a substitute word, asking for raw eggs instead of ice cream, and getting
angrier and angrier that I was refusing to fulfill her request - because
I simply couldn't understand what she was asking.
Count to ten. Count to twenty. Bite your fist. Walk onto the porch. A
friend of mine has toddlers and she told me she once locked herself in
her bedroom all day, coming out to check on them once an hour - just to
regain her sanity. Nobody prepares you. The doctors don't prepare you.
The books don't prepare you. The frustration can be mind numbing and agonizing.
The person you are dealing with looks like an adult, thinks they are an
adult, wants their decisions to be respected as though they are an adult
- and yet they must be protected from themselves like small children.
Unlike a child, they will not obey, so they must be sometimes reasoned
with - unless their brain is on a tape loop, then cajoled or tricked,
distracted away from what may harm them
We have been through hours of answering the same questions of "What day
is today?"
"Today is Monday, the 26th of April"
"So Laurel will be here for 26 hours?"
"No, Laurel comes on Saturday."
"So today is Saturday?"
"No, Laurel isn't coming today."
"What day is today?"
"Today is Monday."
"So Laurel is coming tomorrow?"
"No, tomorrow is Tuesday, Laurel will come at the end of the week, on
Saturday."
"What time will she come?"
"At noon."
"What is noon?"
"Twelve O'clock."
"Does that mean she will be here for twelve hours today?"
"No, she will be here, for six hours, from 12-6, on Saturday."
"But every day is Saturday."
"No."
"Yes." ...
We have been through many days of having many conversations just like
that one. I'm sure that whoever invented the "Who's on First" routine
had dealt with a dementia patient.
"This is good for my skin, it must be good for my mouth..."
"No mother, it's not good to eat. If you want your mouth to stop hurting,
you'll have to brush your teeth."
We come to the point where we fill words into her sentences, helping her
guess what she means as she struggles to communicate. This is not taxing.
It is only repetitious. Then comes a day when something extraordinary
happens:
"Sarah, I need to talk to you."
"Yes mother."
"I need to die and I think this weekend would be a good time to do it."
"Why do you think you need to die?"
"I can't go on living like this, I have lived too long. I want you to
understand that I'm not sad. Everybody that is born dies someday. It is
my time to die."
"I love you."
"I know you do. I love you too, and you have taken very good care of me.
It's just time for me to go. I have to say these things to you because
my sons, Bruce -"
"David."
"David and Ken -"
"Glenn"
"David and Glenn don't understand. You have to make them understand."
I pull up the rocking chair and listen. This conversation takes up the
better part of the day. She gives me detailed funeral requests. She wants
to be cremated, not buried. She wants us to take her ashes out to some
quiet place in the woods to scatter. She doesn't want a lot of people
there, Just Glenn and his partner, David and I. She wants us each to speak.
She doesn't want a wake or a memorial.
She doesn't know how she is going to die. Other than her fading mind,
her body is in relatively good health. None of her systems are breaking
down. She just gets a little weaker every day, and she spends most of
her time sleeping. We spend some time talking about her life. She has
led a full and rich life. She has no regrets. I thank her for the marvelous
husband she has given me. And, finally, I tell her that if she feels she
needs to go, we will love her, cherish her memory, and let her go.
She becomes very calm. More calm than I have seen her since she has arrived.
Far more lucid too. More generous, more kind. She has said what has needed
saying while she still had a clear mind. She may die tomorrow, she may
yet last years - but during those years she may not be as clear as she
is even now.
I hold her for the better part of the day.
This is why I am here.
No one should die alone. No one should even worry about approaching death
alone. In these moments all care and frustration melt away in the face
of her greater need. I have heard it said that one can forego quantity
of time with a person if one is willing to put in quality time. But quality
time does not happen on schedule, during appointments. People's hearts
open up when they will, as they can. And if you are not there - you miss
it. Once a moment has passed, it has passed forever.
And it is in these actions that my heart is stretched. Love is an act.
It is not what we feel, it is what we do. What we feel is a direct by-product
of what we choose to do.
Helen becomes part of our day to day life. It is not always easy, because
Helen was not an easy person when she was well. Her days were usually
measured in complaints. Nothing has changed much, the complaints are now
simply about minutia. The beets are not cut in the right shape. They are
exactly the shape that she has been asking for this last six months, but
now she wants them in larger pieces. The hot water bottle is too hot,
it is exactly as hot as she asked for when she arrived here, but now it
is intolerable. The pears are not ripe, unless of course they are close
to rotting. The sun is too bright, but she still wants to look out the
window and see what the neighbors are doing, so please draw the shade
- but just a tiny teeny bit, no not that much.
It is easy to become sad in the face of relentless complaint. And so,
David and I are resolved not to become depressed. And I suppose this strengthens
us too. We trade off. We keep each other going. We make sacrifices for
each other's sanity. We plan for the future, around her, using the stolen
moments in between her care to create the life we want to have after she
is gone. The pressure gives us a kind of focus.
And she is a mirror of what we could become if we are not careful. Loving
your life is also a choice. And the habits you build when you are young
will determine who you will be when your personality has become calcified
and you can no longer change it. We do not want, at the end of our lives,
to be left only with our petty perceptions of the world as it should not
be. Better we should perceive and celebrate the joy and beauty that we
already have.
"Your face will freeze that way." It's an American saying lobbed at pouting
children, for those of my readers who may not be familiar with the phrase.
What do you want the lines in your face to say about the life you have
lived? Helen's face is, when she is awake, a perpetual frown. And when
she is asleep, she looks like she is terrified.
David, my husband, has already built himself an impressive set of laugh
lines. My face, as yet, has no lines. I have been told that it is impossible
for me to hide anything -- my face is awash with the emotion of the moment.
But it is soft and mercurial. Nothing has been so constant in my life
as change. So it has not yet been determined what my canvass will represent.
We will press joy forward into the clay of our lives, against the resistance
of circumstance. We will stand in the presence of despair and not join
in, but listen with compassion. We will persist in making art. We will
persist in offering love. We will persist in giving care.
Not so much for the sake of the person we are caring for - although that
is an important factor - but for the blessings and lessons that come from
making the stretch in the first place. Praying that we can follow through
to the end of our journey.
by
Sarah Byam
25th April 2004
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