Three years ago, when I started keeping a journal about our dance
with Alzheimer's here, one
of the purposes was to inform and encourage those of you walking the same or similar road.
In my writing, I have tried to simultaneously be authentic and delicate; surprisingly
difficult when you are talking about the raw effects of a disease.
July 19th, 2013, marked the one year
anniversary of Mama being placed in St. John's psychiatric ward. Recently, Dad
and I traveled to MS, and we did what Dad and I do best together; solve the
world's problems. In between solving the world's problem, we reminisced about
this time last year. Today, I would like to gently tread on some of those life
altering moments.
We all had done our Alzheimer’s research. We all knew in some way
shape or form what was coming. We knew that paranoia, personality alterations,
schedule changes, physical and mental decline, and the slow fading of sweet
Mama, were a guaranteed part of our journey. But ain’t nobody have a New York
At the beginning of the summer of 2012, things began to down
spiral for Mama. She was sleeping less and less; fear, paranoia, and panic were
at on all time high. Daddy and Jonathan were like two parents caring for an
infant. Mama rarely slept at night and needed constant care and attention
during the day. Exhausted does not even begin to describe the mental,
emotional, and physical state they were in. Mama’s mind rapidly began to betray
her, the mental disease began to engulf her every moment, and glimpses of the
real Val were getting rarer and rarer to behold. The Alzheimer's was all consuming. And it was as all the books had told us, hell on earth;
yelling, crying, anger, uncontrollable weeping, confusion, and heart wrenching
panic.
July 19th, 2012, for Mama’s safety and well being, for
the safety and well being of Dad, Jonathan, and the entire family, we took Mama
to the emergency room. As a family, we had dried up every possible ounce of
energy and ability to care for Mama in a healthy manner, to care for her in a
way that she was worthy of being cared for. We needed help!! *Small soap box
moment* There is absolutely NO SHAME in asking for help when caring for someone
with needs that extend beyond your abilities. So often there is guilt
associated with placing someone in a assisted living, a nursing home, or having
help come into your home, and believe you me, we all struggled with the demons
of guilt this time last year, but the bottom line was we loved Mama so deeply
that turning over the reigns of her care to someone else was more sacrificial
and more painful than any other decisions we had made as a family. Watching my
Daddy do what was absolutely the best thing for Mama, irrespective of his own
heart bursting into a million pieces inside his body, was one of the greatest
moments of love I have ever experienced.
Sometimes love means leaving your wife as she is calling after you, begging
you to turn around and rescue her from the living hell she is walking through.
Sometimes love means walking down a long, white hallway and hearing the doors
behind you snap into lock down mode, you on one side of the door, your mother,
the woman who brought you into this world, on the other. Sometimes love means
waking up in the middle of the night sobbing in total helplessness, envisioning
someone you love more than yourself, being all alone in an unfamiliar place.
The Notebook had nothing on us.
That day sucked.
Memories of that day still haunt all of us.
Nothing but raw, bleeding, sadness.
After walking thru that experience, her death seemed like a
glorious gift.
In the middle of that hell, we were so blessed by the people who
took care of our Mama. There are not enough meaty words to describe what they
did for us and our unsettled, numb hearts. We called at all hours of the day
and night. They were patient, gentle, and some of the best health care
professionals I have EVER encountered. These people stabilized Mama and made it
possible for her to live her final days more comfortably, without the disease
suffocating her to the end.
Psychiatric nurses and doctors, cheers to y’all!!
To those coming behind us, when we say, “we understand” we really
do! When pray for you, we pray out of this raw place of knowing and
remembering.
What a season. What a journey. What a road.
I took this picture the other day and put in on facebook, I said, "sometimes we just need a hand to hold!"
In preparation of closing this season of our lives in KS, I think it goes without saying, that walking hand in hand with my family these last two years has been this unspeakable gift of blessing, healing, comfort, and this joy that makes your heart swell. I wouldn't trade our time here for ANYTHING. I wouldn't trade that awful day last summer, or any of the other awful days before then or since then, for anything less than it was or is; raw. Beautifully, painfully, wonderfully, raw. Because things are just sweeter and a little less awful when you have someone, or a lot of someone's hands to hold. For this journey, for this Kansas Road, I am utterly grateful.
