Monday, July 22, 2013

This Kansas Road

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 best seller that can prepare you for that segment of the storm.

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.


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